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Correspondence page:
Food Allergy and
Anaphylaxis
Food Allergy and Anaphylaxis
Here we publish extracts from our e-mail. If you do not want your e-mail to be displayed on this page, please say so in your message.
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This is a 'moderated' correspondence page. In other words we decide what goes in, and in what form. Our aim is that the page should be as useful as possible to others. Views expressed may not be the same as our own.
Supermarkets and food allergy:
PT writes:
"... most of the larger supermarket chains are very helpful regarding food allergy. We have a comprehensive guide from Sainsbury's showing which products contain nut oil etc.... are you aware of any newsgroups for anaphylaxis or related topics? I would be very interested in subscribing to one."
Reply:
All the big U.K. supermarket chains seem very helpful, Sainsburys particularly so. It is worth asking what booklets, leaflets and other help they have for people with food allergies.Safeway are experimenting with customer-operated bar code scanners which add up your shopping bill. You pick up the scanner by putting a personal magnetic card into a card reader, so the computer which controls the scanners knows who you are. In the future the scanner may be able to warn you if a picked an item with nuts or some other food you wish to avoid.
What a good idea to have an e-mail newsgroup for anaphylactic food allergy. I have set up this page to serve as one.
Click here to submit your contribution on this topic
An epinephrine shot was not enough: Jan 1998
"... a family member experienced a severe reaction to food and injected herself with epinephrine (adrenaline). It did not work and she is in a coma now. The epinephrine's expiration date had passed (Oct. 97), so would that cause the medicine to become ineffective? If so, you might want to post a warning to others to be aware of the expiration date on their medicine."
Extract from reply:
From other information you supplied, the epinephrine was given correctly and in good time.Epinephrine does not suddenly become useless on the expiry date. But one preparation in the UK did recently deteriorate before the expiry date. The solution becomes yellow or brown if it has deteriorated, but even this does not mean that it is necessarily entirely useless. However, if it is not discolored (i.e. if it looks like water), then it should work. The shelf life is normally 2 years from date of manufacture. A three month overrun should not in practice be all that serious if storage conditions have been good. If they have been bad (high temperature, exposure to light), then epinephrine can deteriorate before the expiry date.
A key to success with epinephrine (adrenaline) is to use it early in a reaction. Massaging an intramuscular injection site can speed absorption into the bloodstream. See the anaphylaxis section in this website.
Some people do need a second injection of epinephrine. The Anaguard and AnaKit syringes from Bayer in the USA and elsewhere, and the Anahelp from Stallergenes in France, allow you to give more than one dose from the one syringe. This is a very serious issue. Doubling the number of Epipens or Anapens (in the UK) with the patient and at school increases the inconvenience and expense considerably, making the above alternatives attractive.
Click here to submit your contribution on this topic
Potato allergy: Appeal for information. Jan 29, 1998
"My daughter has had several anaphylactic reactions to potatoes since last fall. The allergy was confirmed by a postive reaction to food challenge. The challenge was done twice, the first time she did not eat any of the skin and did not have any remarkable reaction. The second time, she ate some of the skin and responded with bi-phasic anaphylaxis. Since then, she has had two anaphylactic reactions with MINIMAL exposure to potato -- as in someone touching french fries and then touching her hot dog."
Comment:
We would like to hear from people whose children are allergic to potato, or who are allergic themselves. I have often had patients who get allergy symptoms when peeling potatoes; all were able to eat cooked potatoes without problem. Most think that the allergen is in the peel. The idea that potato allergy can be as serious as in the description above is disturbing. Please help if you have information.Click here to submit your contribution on this topic
More about potato allergy: Beware of LATEX. Feb 9, 1998
JC writes:
"... if you are having a reaction to potatoes check with your allergist to determine if you also have a latex allergy. it is important that you know because ER rooms use rubber/ latex gloves which can make an anaphylatic reaction worse."
Comment:
Thanks. You are right to point this out and we now refer to potato on our latex page. An allergy specialist would be on the look-out for such possibilities. The cross-sensitivity also applies to a range of other plant foods: see the pages on latex allergy. You might be interested in the following edited extract from a medical journal article.
" "Latex-fruit syndrome": frequency of cross-reacting IgE antibodies.
Brehler-R; Theissen-U; Mohr-C; Luger-T. Allergy. 1997 Apr; 52(4): 404-10
...Serum of 136 patients with immediate-type hypersensitivity against natural rubber latex had fruit-specific IgE antibodies in 69.1% of samples. Cross-reacting IgE antibodies recognizing latex and fruit allergens (papaya, avocado, banana, chestnut, passion fruit, fig, melon, mango, kiwi, pineapple, peach, potato and tomato) were demonstrated by RAST-inhibition tests. Of our patients, 42.5% reported allergic symptoms after consuming these fruits, in a total of 112 intolerance reactions. But fruit-specific IgE antibodies were found only in serum samples from 32.1% of the patients who noticed symptoms due to these fruits. Blood tests seem to be poor at predicting symptoms these foods in someone with latex allergy."
Click here to submit your contribution on this topic
1) Epipen left in car at freezing
temperature
2) Blood transfusions: anaphylaxis if donor eats nuts?
3)
Anaphylaxis from the smell of peanuts? (15 Feb
1998)
VC (USA) writes:
"... My son's epipens were left in the car overnight (temp was a low of 32 degrees). Would you recommend replacing them even though they look o.k?Has a peanut or nut allergic person ever had bad reactions from blood transfusions? I.e what would happen if they received blood from someone who had consumed nuts? Would premedicating with benadryl prevent a reaction?
Have you heard of a peanut allergic person having a serious or fatal reaction just to the smell of peanut/peanut butter?"
Comment:
(Amended 20 Mar 98 to new details for EpiPen supplier)
Epipens left in car overnight (temp was a low of 32 degrees).
The people to ask are the suppliers of the EpiPen; Dey Laboratories, 2751 Napa Valley Corporate Drive, Napa, CA 94558, Tel. 800-755-5560; your pharmacist may be willing to do this for you. Does "a low of 32 degrees" mean freezing point, i.e. 32 degrees F? This is described by the manufacturer as harmful to the device . The reason, I understand, is an effect on the steel spring. You can't tell this has happened by looking at the Epipen.
On the other hand excessive heat is likely to accelerate the breakdown of the epinephrine (adrenaline), which you can see because it turns yellow.
Peanut reactions from blood transfusions?
What a good question! Unfortunately there is good reason to believe there is indeed a hazard. We know that proteins are absorbed into the blood sufficiently intact to cause reactions far from the gut. A very well-known researcher called Salvaggio, in the USA, showed that eating proteins could cause a skin reaction on the back where serum from a sensitive person had been injected. We know that cows' milk proteins emerge in human breast milk. So proteins we eat get into the body in a form which can still cause allergic reactions. Unfortunately it sounds as if it is time that blood donors should be counselled not to eat nuts on the day of the donation. I'll take this up with others. Thank you.
Serious or fatal reaction just to the smell of peanut/peanut butter?
Yes. We hear such stories not infrequently. Usually we can't be sure the real mode of contact was not traces of peanut material on surfaces such as furniture. We have however had a sensible seven-year-old hospitalised for a peanut reaction after standing next to a friend who was eating peanuts. The lass was very clear in denying any direct contact or handling of materials handled by the other girl. This could have been aerosol drift rather than the smell. The fact is that some people do react without any obvious contact.
We would welcome emails about reactions to airborne peanut material.
Click here to submit your contribution on this topic
Antibiotics
and food allergy: a connection?
Airlines and nut allergy: practice varies
(15 Feb 1998)
"... Is, or has, any research been conducted on the correlation, if any, between the use of antibiotics in infancy and the development of food allergies? Your web page echoes other sources I have read on the increase in food allergies in children. There has also been a tremendous increase in the use of antibiotics to fight ear infections in children."
"... Comment: I have spoken with flight personnel on a few of the U.S. airlines who have had experience serving passengers with airborne sensitivities to nuts. In some cases all nuts are banned on all flight segments prior to and during the passage of the nut sensitive individual. In other cases nuts can be served to all passengers except those in the rows before, after or next to the sensitive person. "
Comment:
Your question about antibiotics is interesting, partly because we have evidence that the fewer of the usual childhood infections a child has, the more likely it is to have allergies such as hayfever and infantile eczema (atopic dermatitis). This seemed strange when it was discovered, but since then we have learned that our immune system reacts in different ways to infections and to allergy-producing materials, and that the two reactions each tend to turn the other reaction off. So greater use of antibiotics would indeed be expected to have potential to increase allergies. This needs looking at.The varying practices on flights are also a source of concern. Clearly both parties can't be right. Some people are worried that nut material could spread through the air circulating in the cabin. In any case, it is not humanly possible to be sure cabin furniture does not have the slightest trace of nut on it. How could you ban passengers from bringing their own peanut foods on the plane? Although we have hospitalised one child who we think reacted to airborne nut material from a friend eating nuts next to her, I am not aware of life-threatening incidents from airborne exposure otherwise. If you or anyone is aware of any, please send me information. Commonly, apparent airborne contact seems to cause mild reactions. Our experience with tests in which we carefully give tiny amounts of peanut to children with doubtful nut allergy also suggests that truly minimal exposure is not truly dangerous.
If I am right, nut sensitive people will never be fully safe from mild reactions on flights, but serious reactions should be relatively easy to avoid. There has been a recent flight death due to peanut allergy, but this was on an eastern European airline, and was due to definite nut content in food.
The bottom line, I think, is to travel with adrenaline.
Click here to submit your contribution on this topic
Allergy to seeds (15 Feb 1998)
"... My daughter is allergic (anaphylaxis) to sunflower, poppy, sesame seeds and cottonseed. Do you have any info on these other afflictions? "
Comment:
This can be a serious problem for some people. We do see patients with this problem in our clinics, and there are published data on this in the medical journals. We will try to add a section.Click here to submit your contribution on this topic
Birch pollen allergy can cause reactions to fruits and vegetables (23 Feb 1998)
EG (UK) writes:
"... I am a sufferer from birch tree allergy, which results in hayfever and other effects. I am informed that this is quite rare in Britain, and would like to know more about treatments for this type of allergy. "
Comment:
Birch pollen allergy causes hayfever-like symptoms well before the grass pollen season, which in the UK Midlands is mainly from June to July or August. Curiously, it causes allergic reaction in the mouth when people with birch pollen allergy eat apples, pears, peaches, plums, apricots, kiwi fruit, raw potatoes, celery, carrots, hazelnuts, and some other fruits and vegetables. Fortunately these reactions are generally mild and not life-threatening.Though not nearly as common in Britain as in Scandinavia and Germany, birch pollen allergy is common enough for our clinic nurse to be able to diagnose it before the patients even get to the doctor!
The treatment is just the same as for hayfever caused by grass pollen, and as for other food allergies which cause swellings and rashes.
Desensitisation injections against birch pollen are available, but I don't know how effective they are against the food allergy aspects. I did not find anything on this in a quick search of the scientific literature for the past five years.
Click here to submit your contribution on this topic
Kissing someone with allergy after eating nuts or fish (6 Mar 1998)
SG (UK) writes:
" I am dating a girl who is highly allergic to all nuts and fish. She is very careful about what she eats. I was wondering if I eat something with nuts or fish can I give her a reaction by kissing her? If so, how long must I wait to kiss her? Can I wash my mouth out with Listerine to not put her at risk? This is difficult for me because I love fish and nuts, but the last thing I want to do is cause her to go into anaphylatic shock. "
Comment:
Yes, you can give her a reaction by kissing her. Not only that, but the contact will make her more sensitive in future. You'll have to decide which you love more; your girlfriend or your nuts & fish.Listerine will be no better than water; in fact worse, because it may camouflage the smell and taste of nuts and fish, increasing the hazard.
I recommend that you don't eat or handle nuts or fish on any day when you see your girlfriend, and that you don't have products with nuts in your home.
I love nuts and fish too, but would do this for anyone with nut allergy; for example I don't eat things with nuts on a clinic day and don't bring biscuits or cakes with nuts for the clinic staff.
Click here to submit your contribution on this topic
School catering: how to deal with nut allergy (20 Mar 1998)
J (UK) writes:
" I am in charge of a school kitchen and need to find information on anaphylaxis as one of the pupils at schhol has an allergy to nuts "
Comment:
I suggest you contact The Anaphylaxis Campaign; details in this website.I suggest a school-wide nut ban, including nuts for feeding birds and nuts used in laboratory experiments.
This may seem drastic, but an attempt to separate foods with and without nuts in the kitchen and eating areas is always likely to be prone to failure with possibly nasty results and potential for a court case. In Leicestershire there has been some very understandable opposition to this, but those schools which have implemented a ban have done so smoothly with no suggestion it causes any lasting problems; other parents have in the end accepted it. Incidentally I have sometimes heard stories of nut-allergic children being bullied at school by means of treats involving nuts. A nut ban solves this.
Keeping nut-containing foods segregated demands unceasing vigilance. Since catering staff are human, and 'to err is human', especially when a person is under stress, as can happen to any of us, the apparently drastic solution is in the end the one which produces peace of mind.
Click here to submit your contribution on this topic
Avoiding nuts which did not cause the reaction (28 Mar 1998)
D.G. writes:
" My son had a severe allergic reaction to cashews. 3 years later they did a skin test, said it was very positive, and gave us an EpiPen for home and school. The allergist said it was best to avoid all tree nuts, but by son has had almonds, walnuts and pecans before without problems (he is 7 years old). Can he develop new allergies to these? If so can he also develop a new allergy to peanuts, which he has fairly regularly? "
Comment:
My advice would have been similar to your allergist's. The reason is that our skin and blood tests of hundreds of children with nut allergy show that those children who become allergic to one kind of nut also frequently become sensitised to others. To a lesser extent this is also what we hear from parents and adult patients. But this extends also between peanuts and tree nuts, and even coconut. This goes against traditional reasoning, because peanuts and coconuts are not closely related to other nuts. So my opinion is that avoiding all nuts would be prudent. However, we have huge numbers of children in a similar situation and we do know that some eat other nuts without ill effect, and that some lose their original allergy, something which the literature has until recently claimed did not happen.An encouraging hint might come from comparisons between countries in Europe. It seems that the prevalence of nut allergy in countries is related to to the amount of nuts imported per unit of population. This suggests that less exposure leads to less allergy. The implication is that avoidance short of obsessional avoidance is effective.
I am also not happy with advice about an age at which a child can start to eat nuts again. The upsurge in nut allergy is a recent thing, and it seems to me that such advice has to be arbitrary until we understand what is going on.
In reality your question is extremely difficult to answer. We need more detailed follow-up studies of large numbers of children like your son to answer your question properly.
Click here to submit your contribution on this topic
Travel to the UK (31 Mar 1998)
Mary S. writes:
" We will be visiting the U.K. (London). My daughter has a deadly peanut allergy and I am worried sick that she will eat something wrong. Could someone PLEASE give me an idea where "hidden" sources of peanuts and related products may be lurking? We plan to avoid anything with ANY sort of nuts but as you know, that's only part of the problem. I would appreciate it if this could be posted in your discussion page and grateful for ANY help. "
Comment:
There is no comprehensive list of "hidden" sources of peanuts. The people who have thought about doing one feel it is a hopeless task.Travel is a problem anywhere, because you can't have the same control over food which you have at home. Most bad incidents occur when people are eating out or eating unusual foods.
The best tip I know comes from a video made by a lady Allergist in the USA (try the Food Allergy Network). In restaurants etc. you should say "By the way, I must tell you that my daughter is highly allergic to peanuts, and that if she has even the tiniest amount of peanut she might die." In other words, be clear and assertive, and upfront about the very worst possible risk. It is not for others to subject your daughter to risk because they are unsure how important it is.
At least you won't have a language problem, though a patient of mine was told that the sate sauce in a Chinese restaurant did not contain peanut!
The major British supermarkets, perhaps especially Sainsburys and Marks and Spencer, are excellent about nut warnings on manufactured foods. Perfection is not achievable. Don't worry too much about undeclared peanut oil (see the nut allergy page).
The EpiPen is available here. The AnaKit is not, and the AnaGuard is listed in the Bayer catalogue, but an attempt to order it failed. We use the AsthmaHaler Mist, a USA product, as epinephrine inhaler. I recommend the EZ-Spacer, another US product, as a collapsible volume spacer device for young children with an epinephrine inhaler; at least two similar devices exist in the USA, readily available in US pharmacies. Epinephrine is called adrenaline in the UK. Finally, there are excellent allergy specialists in London. Try Great Ormond Street Hospital (near Russel Square, London) for children, or Guy's Hospital (United Medical and Dental Schools of Guy's and St Thomas' Hospitals) near London Bridge, or St Mary's, or Professor J. Brostoff at the Middlesex or privately, or Prof R. Davies (the London Hosptial, I believe), for example. For other specialists, contact the British Society for Allergy and Clinical Immunology.
You could contact the Anaphylaxis Campaign, which is our national organisation for people like you; address on this website.
There is a superb article on hidden foods by Dr. Harris A. Steinman in the Journal of Allergy and Clinical Immunology, 1996, August, Volume 98, Number 2, 1996.
Click here to submit your contribution on this topic
HELP! We don't seem to be getting the help we need for our son! (14 April 1998)
I have included the following extract because it is so typical of what parents of nut-allergic children tell me.
A mother writes:
" Our son, Christopher, reacted two years ago to a small piece of walnut . His lips started hurting him and swelling immediately .We took him to Hospital straight away and they wired him up to a heart monitor and other bits and pieces and then gave him adrenaline and antihistamine. They said next time the reaction will be ten times worse.We saw a specialist who was not going to test for other nut reactions until I said: "Can you guarantee he won't be allergic to other nuts?" So after a blood test we found out he was also allergic to hazel nuts. A year later he was starting school and I was worried about monitoring his day and other children with nuts etc. I spoke to the nurse at my local G.P. and she told me about the Epipen. I then had a lady come round from the Hospital home care team and she has been great helping us with the school and family. It is just a shame that I had to find out for myself all about my son's condition and what to use and what happens to him when he is having a reaction.
Why did my own doctors not tell me, or the specialist at the Hospital? Even my own doctor offered my son a sweet the other week and my son said: "I'm allergic to nuts". My doctor said "These are chocolates these don't have any nuts in them". I said: "He suffers from anaphylaxis". Only then did she say: "OK, you can't have any". My son is very good at asking but when up against people like that, especially a doctor, what can you do? You would think that of all people doctors would understand. "
Comment:
Fortunately it is far from necessarily true that the next reaction will be much worse. But it is a possibility, and of course if it was simply as bad as the previous reaction, that would be quite bad enough.From what you write, it seems that you did get support from your General Practitioner's nurse, and from the hospital, who sent the lady (nurse?) round, and from a specialist, though I'm not sure it was an Allergy Specialist. It seems everyone was trying to help to the best of their ability, but you are not alone in feeling there is a gap between the help you got and the help you should have got. It is quite possible that your family doctor feels inadequately supported in helping your son.
Unfortunately, doctors trained in this country hardly ever get proper training in allergy during their student years, and it is difficult for a busy working doctor to make this up afterwards if the groundwork has not been laid. This is the fault of the medical schools, which have taken the attitude that allergies are not important enough. This attitude is unforgivable. The Anaphylaxis Campaign has been raising this as an issue, because so many parents have similar experiences to yours.
Click here to submit your contribution on this topic
Nut allergy and allergic reaction during badminton (24 April 1998)
Laura E. writes:
" I have a life threatening allergy to all nuts, and suffer symptons from even being in the same room as nuts. Recently I experienced an allergic reaction during a game of badminton, but for no apparent reason. The consultant I saw said this was exercise induced anaphylaxis. I have read about this on your web site, but wondered if anyone on your mailing list has experienced this themselves or knows any more about it. "
Comment:
Exercise or hot baths or showers increase the risk of anaphylaxis from any cause, but it is also possible that you have 'exercise-induced food-dependent anaphylaxis', a well-described condition.Any comments from other readers of this page?
Click here to submit your contribution on this topic
Sesame seed anaphylaxis (28 April 1998)
E.B. writes:
" Having just found your web site I am very surprised to find that there is no mention of sesame seed anaphylaxis, a serious condition from which I suffer.I am also aware that there are many other people like myself. I would be very interested in hearing your views on the subject. "
Comment:
There was a reference on sesame seed on the nut allergy page, but I have made this clearer. Use the 'Find' facility in your browser if you have difficulty in finding a subject.Sesame seed allergy is real enough. Somewhat to my surprise I have not seen many patients with this problem. I would be interested in hearing from others about the pitfalls, and how well or badly people with sesame allergy manage to avoid problems, since it strikes me as a bit of a nightmare. How much of a problem are sesame seeds which fall off bakery products? Do any of you have any experiences with tahini (tehina) hidden in other foods? Are there other forms of hidden sesame seeds we need to be aware of?
Paragraph revised 10 May 1998:
Sainsbury's clearly mark sesame
seeds on a tub of houmous, twice over in fact. Firstly the list of
ingredients names 'TAHINI (PULPED SESAME SEEDS)'. Secondly there is a
prominent bar under the ingredients list which states: 'CONTAINS SESAME
SEEDS'. So they seem to be doing their very best. Surely other major
supermarkets and manufacturers must be moving along the same lines. It would
be good if all this was subject to standard regulations so that people like
you could walk into any shop without worrying about different standards.
Sunflower seed and poppy seed can cause the same sort of problem. As you rightly imply, there needs to be more awareness of this.
Click here to submit your contribution on this topic
Sesame seed anaphylaxis (28 April 1998)
E.B. writes:
" I suffer from sesame seed allergy. Ingestion results in anaphylaxis.Be assured I travel the world, I will not be beaten by my problem, and I eat out, but only foods that I know are safe, and I eat at home. My friends abroad also know of my problem and are a great help.
As the page says, use the major food stores, Sainsbury's and Tesco who produce an advice sheets on nut allergy.
ALWAYS carry your Epi-pens etc. and have them close to hand.
Be a warrior, Be safe but do travel. "
Click here to submit your contribution on this topic
Sesame seed anaphylaxis (12 May 1998)
E.B. writes (replying to a request for more information):
" My allergy to sesame seed started five years ago at the age of 47. I have nearly died four times from various degrees of reaction, and as my allergen was not confirmed for two years, I was playing Russian Roulette with my life.It was tahini paste in houmous that confirmed my problem.
I am the manager of a hospital department in the UK.
I have over the past few years corresponded with another sesame sufferer, who has just had an article on the subject published in the "Phamaceutical Journal" May 9 1998. I have informed her of your web site (she does not compute) but she is willing to pass further information to you on our side of the problem, some of which may be useful to you with your information site on the web as she has carried out much research on the subject.
There are some 180 known "sesamites" in the UK that we know of, but we can assure you that there are more including multiple sufferers. "
Click here to submit your contribution on this topic
Focaccia bread, pesto sauce, Jelly Belly beans and other sources of nuts.
H.S. writes: (17 May 1998)
" Today I suffered a mild anaphylactic reaction to some FOCACCIA bread bought in TESCO. There was no bold labelling to suggest it contained nuts. However it contained CASHEW and PINE nuts in the PESTO sauce.I want to warn other sufferers to beware of harmless-looking products, and URGE them not to be complacent.
OUR SUPERMARKETS CANNOT BE TRUSTED. THEY NEED SUPERVISION.
I was lulled into a false sense of security, after reading bold labels that my tuna sandwich and indeed the entire contents of TESCO'S coffee shop may contain nuts, but when it comes to products that DO ACTUALLY CONTAIN NUTS, Tesco see no need to clearly label this. WHY?
Also watch out for peanut JELLY BELLY jelly beans, CADBURYS CHOCOLATE SAUCE and MCDONALDS HOT CHOCOLATE
Maybe allergy sufferers could e-mail in the foods they have reacted to (in categories e.g. nuts) so others can be warned. "
Comment:
You are surely being unfair to the supermarkets. I have been amazed at the seriousness of their approach to allergy, and at the amount of money and effort they are prepared to spend to help nut allergy sufferers. They very much do see the need for labelling; have you informed them? I think you'll find them helpful, and you will help to safeguard fellow sufferers. Of course you, as a customer, can take your custom to supermarkets with the best record, making care a good selling point for them.The Anaphylaxis Campaign actively works towards better labelling. Are you a member? Have you passed your concern to them?.
You write that there was "no bold labelling". Do you mean there was labelling but that it was not bold? Reading ingredient labels is a skill you learn when you have to do it regularly, and you'll spot even fine print.
At present it seems almost impossible to label absolutely everything. Factory-produced foods sold in packaging are one thing, but loose food items with complicated recipes are another, as are restaurant foods.
People with life-threatening food allergies need to be ultra-careful with foods which are bought ready prepared. If you are not sure of the ingredients, don't eat it. I know that many people with nut allergy resent this, but experience shows that behaving as if you have a "right" to eat everything leads to danger.
I do agree with you that there is a need for better lists and educational materials to help people. But remember that any list will be out of date almost as soon as it is produced, because new foods and changed recipes will appear.
The price of freedom from dangerous food reactions is eternal vigilance.
Click here to submit your contribution on this topic
Life with nut allergy.
A.R. writes: (18 May 1998)
" Hi..I really enjoyed your web site.I'm 38 years old. When I was a little girl I knew something went wrong when I had a nut, but my parents, who had never heard of nut allergy, thought it was all in my head. Boy were they wrong.
When I was in my early 20s, I read an article about anaphylaxis and nuts. I went out and bought an Epipen.
I have a hard time eating out, even when assured the food has no nuts. I can even experience panic if I bring in food to the house.
Thank you for your website. "
Comment:
You are not alone in your experiences. As you are in the USA, why not join the Food Allergy Network (in the UK the Anaphylaxis Campaign)? They will be able to give you plenty of tips and the support of others like yourself, and you in turn will be able to contribute and help others.Click here to submit your contribution on this topic
Nuts on airlines; a continuing danger (19 April 1998)
G writes:
" My wife is allergic to all nuts and has experienced anaphylactic shock 3 times. We travel frequently and have had some difficulties. We use the list supplied by the Anaphalaxis Campaign and follow their advice when dealing with airlines. However, we flew with Continental Airlines from Manchester to New York. They confirmed that they would not serve nuts on the plane - however they did. They have now advised the Anaphylaxis Campaign that they will not remove nuts in future. The Campaign has advised all members.If there is any way in which we could lobby in order to remove peanuts from planes then I would be happy to help.
I do not want to experience again the terror of waiting to see if my wife would react whilst mid-Atlantic. "
Comment:
There has recently been a death from nut allergy on a passenger plane. The patient was alive for quite some time after inadvertently eating food with a nut ingredient, but was dead by the time the plane landed at Heathrow Airport.Click here to submit your contribution on this topic
Airlines; is nut dust or aerosol in cabin air hazardous?
K.T. writes: (7 Jun 1998)
" I'm hoping you might be able to share your knowledge on a subject that has received quite a bit of attention lately: commercial air travel and the inhalation of 'peanut dust' causing anaphylaxis. There have been several reports of severe peanut allergic patients who, not by ingestion, but by inhaling the 'nut dust' suffered severe allergic reactions. There have been discussions over possible factors adding to the circumstances; one being the lack of fresh oxygenated air in the cabin during long duration flights. This information has been verified by respected physicians as well as allergy testing laboratories and cooperating airline personnel.If this is a possible life threat to severely peanut allergic individuals, then shouldn't the airlines take steps to remove peanuts from their flights? So far, the only airline that has done so is British Airways. What about passengers traveling within the United States?"
Comment:
Although I too have heard reports of people apparently reacting to cabin air, lack of oxygen is not a credible explanation. Indeed the reports I have heard are so lacking in detail that it is difficult to know whether they represent anything serious and whether exposure was not to traces of nut material left on trays and seats. All the serious incidents I have come across have involved the eating of nuts.We would like to hear from anyone with reliable reports or experience of this problem, or with up-to-date information on the action different airlines take on nut allergy. The situation with airlines seems to change. I understand there have been others which banned nuts, but that at least some of them have reintroduced nuts. Airlines which normally serve nuts sometimes seem willing to ban nut snacks from a specific flight.
Click here to submit your contribution on this topic
Airlines; arranging safe travel.
Ann B. writes: (3 July 1998)My son suffers from peanut allergy. We will be travelling with Virgin Airlines this summer and have informed them of his dietary requirements. They have offered peanut-free snacks only in the cabin in which we travel and have asked our GP to sign a letter stating that this arrangement is satisfactory. We will be carrying antihistamine tablets and an Epipen. "
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Airlines; arranging safe travel.
S.W. writes: (27 July 1998)
" I have recently been informed by Jersey European Airways that all nuts will be banned from their flights from July 13th 1998. This was in response to letters from my wife and I asking if they were planning to follow the lead of other major airlines in banning nuts. "
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An airline which refuses nut-free flights.
SRS writes: (28 July 1998)
" We recently have been surprised at the attitude of a new airline, 'Easyjet' whom, as we understand it WILL NOT take off nuts from its scheduled flights. A so called people's airline! "
Comment:
The impression I get is that most airlines are very helpful about nut allergy, so it is a big pity that some are not. I've just flown with British Midland Airways and had excellent refreshments with not a trace of nut in sight.Click here to submit your contribution on this topic
Another airline which refused nut-free flights.
PM writes: (3 September 1998)
" My child has quite a few food allergies and the fatal ones are nuts, fish, eggs. I was thankful for the article on banning peanuts on planes. On a previous flight to Montreal my child reacted to other people eating peanuts around us. The worst experience for us was that the airline SABENA didn't even put a special meal on board when we had ordered it while booking our tickets. On top of all this they didn't want to listen to my explanation that my child was allergic and he couldn't eat certain foods. I feel people think we are exaggerating about the allergies. The smell of cooked fish and nuts makes my child very sick. He has had anaphylatic shock twice and we are very careful but schools and airlines seem not that interested. "
Comment:
In today's Times newspaper (Sep 3 1998, p 17, col 1) there is a report that the US Government Department of Transportation has told all large American airlines that they must set aside a "peanut-free zone" when requested to do so by passengers with medically documented peanut allergies. If they do not stop serving peanuts on the flight, the minimum for the "peanut-free zone" is the row of seating with the passenger plus the rows in front and behind. This is in conformity with a law passed in 1986 that guarantees access to planes for the disabled.I would have thought that SABENA will now be aware of this and may wish to conform to avoid problems with American passengers and to be seen to be following best international practice. Perhaps showing them this correspondence might help.
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Airlines: ingredient lists?
A.B. writes: (29 Oct 1998)
" I have tried for some years to get American Airlines to provide just one ingredients list on each flight. I have been in contact with their catering department, and have even received FAXed recipes as they present them to their food purveyors. However, they tell me that it would be much too expensive to provide an ingredient list. I think that it has more to do with liability than expense. On a recent flight I had a nut-allergic flight attendant. I asked him to try through his union to get this accomplished. He thought it was a great idea, so I hope he follows through. It just seems so reasonable and effective to me. Maybe the union will have more power than the passenger. There must be some sort of disability clause in their employment contracts. "
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Burning peanuts in school experiments.
" In relation to the use of peanuts in schools I am aware of one child who had a reaction when he entered a classroom in which the previous class had been burning peanuts. This is a common experiment done in the majority of Scottish High Schools. "
Comment:
Not only Scottish High Schools! How bad was the reaction?Click here to submit your contribution on this topic
Travel and peanut allergy.
Sent anonymously: (10 July 1998)
" I am thinking of planning a trip to Ireland to visit relatives. However, I am afraid to travel because my daughter has a peanut and nut allergy. Can you give me some tips regarding food and travel in the U.K. ? "
Comment:
I'm not sure where you are travelling from. However, the main problem is restaurant food and the like. I suggest avoiding Asian restaurants because the food is so mixed, the ingredients are unfamiliar to non-Asians, nuts are used a lot, and there may be language problems. Many other restaurants are very helpful though, and the same may apply to some hotels. So I suggest you book by telephone or fax and use the opportunity to test their attitude. It might be best to speak to the hotel manager, and I'd be cautious about accepting the word of a clerk unless you get a very clear assurance about the hotel's policy on this.If you stay with relatives, remember that however intelligent and concerned they are, safety needs a mindset which is almost impossible to acquire instantly. With the best will in the world they may make mistakes. You will have to be sympathetic about the difficulty, but vigilant.
Say "My daughter has nut allergy, AND IF SHE HAS ANYTHING WITH EVEN THE SMALLEST TRACE OF NUT SHE MAY DIE".
All that said, the best advice may come from those who have experience of this in their own families. Are you a member of a self-help group?
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Peanut allergy: bringing up an emotionally and physically healthy child.
Sent anonymously: (10 July 1998)
" I have a lot of anxiety about raising a 5 year old daughter who has just been diagnosed as have a peanut and nut allergy. What is safe and what is not safe? How protective should you be? Is there any information out there or any one who has grown up with a nut/peanut allergy to help me bring up an emotionally and physically healthy child? "
Comment:
This is a very important question. In my experience, a lot depends on you, and the fact that you recognise the issue is a very good start.
Joining a self-help group will give you some idea of how different families cope. As in all human life, you can choose to adopt good ideas from people whose approach you admire, and avoid the mistakes you see made, whilst of course providing the same sort of help and support for others. This website lists some organisations which may be able to help you find a local group.
A good allergist will also be sensible about putting the whole thing in perspective. It is obvious that there are other parents who have to cope with even more severe problems in their children. Though we are all very concerned about the risk, fatalities are rather rare in practice, and extremely rare below the age of 10 years. I often explain that though we don't expect our hospital to catch fire, we have fire extinguishers everywhere and would be considered negligent if we did not have them, check them regularly, and trained our staff to use them. The epinephrine (adrenaline) injection kit is a bit like this.
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Who keeps the epinephrine injection kit at school?
D.W. (USA) writes: (1 Aug 1998)
" My friend's child has severe peanut allergy. The school nurse keeps his Epipen locked up in med cabinet. One incident occurred and the nurse could not be found or key to cabinet. My friend wants teacher or child to carry Epipen. Is there any legal precedent or other info you can provide to persuade school board to change medication rules ? "
Comment:
In the UK there are now written guidelines for schools which more or less cover this. In the USA I suggest you contact the Food Allergy Network (see Other sources of information); I would be interested in their reply.Certainly there is no point in having injectable epinephrine if it is not available the moment it is needed. People have died unnecessarily in this situation. Once it is clear that a reaction is bad enough to make epinephrine desirable, the earlier it is given, the better and the more certain the effect. Please bear in mind that fatalities are extremely rare below the age of 10 years or so (surprisingly), but the people at school would be foolish (also in a legal sense) to rely on that against the judgement of the doctor that the child needs to have epinephrine available.
Having the child always carry the epinephrine is not usually the best solution in my view. The solution I favour is that all medication liable to be needed in an emergency should be stored by staff, but always quickly available. I.e. when the nurse is not available, another member of school staff must be responsible. After all, the school is never left unstaffed whilst pupils are present, for reasons not so different in principle.
Imagine having parachutes available in locked containers controlled by a member of staff not always on board the aircraft! Or fire extinguishers only available via one member of security staff who might be away for lunch. Ludicrous? So is the same situation with epinephrine.
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Help in the US regarding Nut allergy and legal recourse....
Mike (USA) writes: (7 Aug 1998)
" I am in search of any case history in the US that could possibly back up a food allergy claim in a restaurant. Due to a garnish on a dessert incorrectly described as "peanuts" (which I have been able to eat since birth) I ended up taking an "unscheduled" ride in an ambulance that was neither conducive to digestion nor romantic to any degree. On top of that, it really frightened my fiancee.The theme restaurant here in Las Vegas has offered to cover my medical costs with the stipulation that I sign a "release of liability" that also doubles as a "gag order". The attorney I have hired does not seem to be well versed in "food allergies" and I am not very confidant that she will be successful in prosecuting this case.
Are there any on-line services that document case history of this nature ? Any help would be most appreciated. Please respond directly to my e-mail address as well as the board. Someone else may need the info...
Thank you, in advance."
Comment:
Does anyone out there have useful information on this?This incident sounds like a good example of how many mishaps in nut allergy happen.
Misleadingly labelled ingredients are a problem in nut allergy and in some other food allergies. They are a problem not only to you, but to the restaurant as well. Who caused the mislabelling, the supplier of the ingredient, or the restaurant? If the supplier's label was correct, was it so obscure that the mistake was understandable? The restaurant's wish to include an agreement to silence you may be reasonable. Presumably they did not set out to kill customers, and killing their business is wrong unless they fail to correct the situation which led to the mistake or unless they really showed a disregard of normal precautions. In nut allergy it is bound to be the case that patients will often be more expert than restaurant staff, and it seems to me that restaurant staff never can be so expert and infallible that all mistakes will always be avoided. If you are allergic to nuts, eating out will always be a problem. This angers some people with nut allergy, who argue that they have a right to live like anyone else. In my view that is impossibly unrealistic. It's a bit like saying that someone with brittle bone disease has a right to do sports with an above-average risk of injury.
IN MY VIEW THERE IS ALWAYS A RISK WHEN YOUR FOOD IS PREPARED BY OTHERS OUTSIDE YOUR IMMEDIATE FAMILY. THIS RISK CANNOT ALWAYS BE AVOIDED, AND YOU MUST BE PREPARED TO DEAL WITH MISTAKES. This generally means having injectable epinephrine (adrenaline) with you.
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Cereal bars brought to primary school.
A.S. writes: (11 Aug 1998)
" Our peanut allergic four year old son starts school this September. The children are currently encouraged to bring a "cereal bar" into school each day for their snack - we are trying to persuade the school to change this to fruit/veg/cheese without success - can you direct us to any one who has had more success with banning nuts from school? "
Comment:
A number of our local schools have banned nuts in any form. I would appreciate comments from others on this.Click here to submit your contribution on this topic
Airborne nut particles
B. (USA) writes: (14 Aug 1998)
" I did a literature search on airborne reactions to peanuts. Nothing. There is info on snow crab production plants and airborne particles. Also some food production plants had aerosolized dried egg. For peanuts, the only thing I came across was an abstract presented at the AAAAI that documented the presence of peanut particles in the air filters on an airline. Yunginger out of Mayo clinic was one of the authors. In the USA the Air Carrier Act requires airlines to make accommodations for disabled persons. For example this is the law that has airlines provide diabetic meals or accommodate a patient with oxygen. The US Dept of Justice has described a child with severe food allergies as disabled in their settlement case with LaPetite Academy, requiring them to administer epinephrine (adrenaline) in preschool so that it is accessible. I think that the severe food allergic must learn what the other patients have learned. I think only then will we be taken seriously enough.I wish the allergy MDs would address the airborne issue clearly through research. I am aware that anaphylaxis can be a conditioned response (p. 525 of Food Allergy by Metcalfe and Sampson). However, my daughter has experienced palate itchiness while sitting in a seafood restaurant. I read in Scientific American that artificial smell has been developed and is being used in bomb detection by the US govt, & for monitoring bacterial growth in the wine industry. It would be nice if this technology could be applied for detection of peanut allergen airborne so that some clear science can be brought to this topic.
My daughter is asthmatic, and shrimp, peanut and pea anaphylactic. "
Comment:
You are right. It would be easy to conclude that a reaction was from airborne exposure when in fact it was due to contact, e.g. from contaminated surfaces. Imaginary reactions do occur, understandably, and so there is quite often some element of doubt. If we can prove that airborne exposure produces reactions, we'll be able to get people to take better precautions. We welcome email on reactions to airborne exposure.Click here to submit your contribution on this topic
Allergy to hazelnuts and apple: a link with birch pollen allergy.
D.H. writes: (14 Sept 1998)
" I developed asthma about 2 years ago although all my brothers & sisters have always had it. At about the same time I began to notice an itchy feeling in my mouth when I ate an apple. Over the last 2 years this happens whatever fruit I eat even hazelnuts. My mouth tingles and itches and it has put me off eating fruit altogether. I can eat bananas with no ill effect. I haven't bothered consulting a doctor Please can you give me any info. Thanks. "
Comment:
It sounds as if you have a form of the 'oral allergy syndrome' which goes together with birch pollen allergy, which usually shows itself as 'hayfever' starting when birch catkins are shedding pollen, long before the grass pollen season. Birch pollen contains proteins which are similar to proteins in apple and hazelnut, also raw potato, carrot, celery and plants related to the latter two (umbelliferous plants), causing this strange condition. It has also been described with cherries, peaches, plums and probably apricots as well as kiwi fruit. There are some other forms of the condition, related to other pollens. Fortunately this is usually not very serious, though I think you are quite right to avoid the experience, as in a few people allergy to fruit such as apple can become very serious indeed. There is a published report of the fruit allergy resolving after desensitising treatment ('immunotherapy' in the USA) with birch pollen (Kelso JM, Jones RT, Tellez R, Yunginger JW, Ann Allergy Asthma Immunol. 1995; 74(5): 391-6).Click here to submit your contribution on this topic
TIME magazine has a controversial page 1 article entitled "Don't Ban Peanuts" dated October 5, 1998. As the title implies, it argues against nut bans in schools.
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Does
nutmeg cause reactions in nut-allergic people?
Can nut-allergic children
play with acorns and chestnuts?
These are questions I have been asked a
few times recently.
Comment:
I found no reference to anaphylaxis attributed to nutmeg over a five year period, and have not had or heard of any patients with this problem. Mace, which is the shell of nutmeg, may have contributed to asthma in someone who used it in making sausages, and there is some evidence for eczema in food workers due to skin contact with nutmeg. However, there seems to be no reason why people with nut allergies should avoid nutmeg.I have found no evidence that acorns or chestnuts are dangerous for nut-allergic children or adults. Edible chestnuts do cause anaphylaxis in some people, but these are not particularly the people who react to peanuts or the other common tree nuts. Rather, such reactions are linked to latex allergy, quite a separate problem, although both problems happen in people who are 'atopic' (predisposed to common allergies).
If anyone knows of dangerous reactions to nutmeg, acorns or horse chestnuts an email with details would be welcome. Meanwhile, I would not worry about eating nutmeg, or playing with acorns or chestnuts.
References: Occupational asthma due to different spices. Sastre-J; Olmo-M;
Novalvos-A; Ibanez-D; Lahoz-C. Allergy. 1996 Feb; 51(2): 117-20
Spice
allergy evaluated by results of patch tests. Futrell-JM; Rietschel-RL. Cutis.
1993 Nov; 52(5): 288-90.
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Food labelling
S.M. writes:
(10 Oct 1998)
" Whilst labelling of products with warnings is becoming more prevalent I have found that this is often an action taken to cover the supplier should there be a trace of nut rather than a true warning.
The increasing number of foodstuffs that have warning labels is making it increasingly difficult to purchase "safe" products.
Foods that were previously "safe" are now appearing with warning labels.
The fact is that the Suppliers are aware of the issue and rather than taking steps to remove any possibility of nuts from foods that are not made with them they are resorting to warning of the possibility that the food may include traces.
This is of no real benefit to the consumer.
The warning labels are often hidden on the reverse of the packages rather than on the front. Compare this with a "suitable for vegetarians" label! A Food Hall Manager commented - "The Vegetarian Label helps sell food, the Nut warning has the opposite effect"!!!
There should be a push to:a) Label foodstuffs appropriately with a universaly recognised symbol.
b) Put Labels prominently on the front of packaging.
c) Remove any possibility of nuts contaminating foods that do not require nuts in their manufacture. "
Comment:
In the UK action is being taken to address most of your points. We have to recognise that there are genuine difficulties for even the most reputable food manufacturers. The latest Newsletter of The Anaphylaxis Campaign has an article about this.Click here to submit your contribution on this topic
Natural treatments to strenghten the immune system
M.A. writes: (10 Oct 1998)" I am responding to the guest whose three year old was diagnosed with cashew nut allergy. My 2 year old was just diagnosed and he has also had all the other nuts with no difficulty and his allergist also suggested that he stay away from all the other nuts as well. I am now searching for any treatments that might strenghten his immune system via natural methods. If this guest has any experience in such a field, I would appreciate any and all information. "
Comment:
I agree with your allergist. If I knew any treatments that might strenghten his immune system to help this problem, I would be using them, and mention them on the website. Sadly, I think that alternative practitioners who promise this are dangerous because they decrease the likelyhood that you will follow correct advice from a properly trained allergist.Click here to submit your contribution on this topic
Proper physicians prevent pesto panic. Dangerous woks.
M.S. (UK) writes: (23 Oct 1998)
" My sister, aged twenty, has suffered from a nut allergy for most of her life, and has always controlled it with over-the-counter antihistamines. We have never seen her have a severe reaction and were always thankful that she didn't have to go through the terrible anaphylaxis that many sufferers do. However, on a holiday to Italy this Summer she suffered an enormous reaction to pesto and went into anaphylactic shock. The Italian hospital was very good, and she was lucky to have a friend who is a third year medical student with her who helped calm her down and explain the situation.However, the experience has left her deeply afraid, and on returning to university she is not her usual self, as you can imagine. To make matters worse she had another severe reaction last weekend after using a friend's wok. She is now suffering from panic attacks and claustrophobia, and does seem to be getting some help from the university doctors and nurse.
Despite this, it does seem like she feels very afraid, as do both me and my parents. My parents are particularly anxious as they live a good four hours from her and are petrified that there's going to be an emergency. I know they have received some information, but please could you send them ANY info that could help (e.g. support groups, book lists etc.). "
Comment:
Your sister should see an allergy specialist; see my website about how to find one. The rest will follow.Antihistamines alone are not adequate against nut reactions which may be fatal. Taken by mouth they are even less useful, because they take so long to work.
The panic attacks and claustrophobia are understandable but should become unnecessary with good training and medication from a good specialist.
Details of support groups and books are on the AAIR website.
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'May contain nut traces' labelling.
E.B. (UK) writes: (24 Oct 1998)
" I am fed up with scant labelling of products - 'May contain nut traces' is not good enough. What nuts? Why is one batch number of a product labelled differently to another? I know, the same lines are used for many products and it's to cover food manufacturers backs. Soon we'll not be able to eat anything pre-prepared!! Are you challenging this issue? I'd be interested for any info on what you do etc. "
Comment:
You are not alone in your feelings. Others, including the The Anaphylaxis Campaign, the Government and the food industry, are working on this, but a lot of the sluggishness is due to genuine difficulties. Our contribution is to facilitate public discussion, e.g. through this web page, on which your plea is now available to everyone.Click here to submit your contribution on this topic
Travel with nut allergy. Escargots, satay, rijsttafel and oils.
A.B. writes: (29 Oct 1998)
" Thanks for making your web page available. I am severely allergic to tree nuts, peanuts, sunflower seeds. I travel all over Europe, but so far not to Asia because of the peanut problem. I carry a notice, translated into each language that I'll encounter on a trip. I list not only the things that I cannot have, but in the case of oils I list the ones that are safe for me. People get confused about whether safflower, for instance, is the same as sunflower. I xerox quite a few of these before each trip. Then I pass them out to the maitre d's, the waiters, and anyone else handy. Sometimes they give them back;sometimes they don't; sometimes the chef will come out with a question. By the way, I list marzipan in my list of foods to avoid. I'm amazed at how many cooks don't realize that it's almond paste. Also, I read on the side of a Bombay gin bottle that it also contains almonds as flavoring agents. I'm 59, and have lived with this for all of these years. It's tempting to stay at home and cook myself, but I truly love to travel, and don't want to avoid it. I think it helps to be a cook, and to recognize some dangerous areas. Satay, for example, almost always has peanut sauce. Rijsttaffels are loaded with danger. Once I ordered escargots bourgouignon because I know how to make them. Little did I know that the chef had added ground walnuts to the sauce! I carry four epipens with me. The time of the escargots it took 2 epis and 2 hydrocortisone bags. As far as I know I didn't even swallow any of the sauce. As soon as I bit down on the texture of nut I spit it out into my napkin and then rinsed out my mouth.All in all I consider nut oils to be the most dangerous because they are a hidden ingredient. They are often proud of being cold-pressed and unrefined. Thanks for the opportunity to share my method of coping with traveling with an allergy. People for the most part are very considerate. "
Comment:
Thanks for this helpful account. REFINED peanut oil (the kind normally sold) appears to be entirely safe, but 'cold pressed' (unrefined) is not. I thought satay always contains peanut, in fact largely consists of it. Rijsttafel is the Dutch name for a more or less elaborate collection of Indonesian dishes, and will normally have substantial amounts of peanut in a number of the dishes, not all recognisable to someone not familiar with it. It is also liable to contain other nuts. I would have slipped up on the escargots, but then I think I would be more negative about restaurants if I had the problem myself. The fact is that many people feel like you do, and will find your story instructive.Click here to submit your contribution on this topic
Sesame, pumpkin and eggplant seeds.
B.D. (Long Island, New York) writes: (17 Nov 1998)
" I am anaphylactic to sesame, pumpkin and eggplant seeds (correlation?). As you have mentioned already, it is quite difficult to defend yourself from an attack from a seed that many companies sometimes find it not even necessary to include in their ingredient labeling! (are there grounds for a lawsuit by the way?)My personal line of defense is to basically expect any food you have never eaten, or any food that you are receiving from a new distributor (restaurant, grocery store, friend, etc.) to contain sesame seeds. What this means is that you must religiously 1) read all ingredient labels- looking out for red flags such as "bread crumbs", "tahini", etc. 2) inspect every piece of bread- especially the bottoms of the loaf and 3) to always have your medication.
I personally, have never injected myself with an epinephrine pen. That however, does not mean I have never needed the Epi-pen. What I use may be of help to people who do not necessarily believe that they are having a bad reaction and would rather want to wait it out. It is an over-the-counter medication called Bronkaid. It is an asthma inhaler that delivers .25 mg of epinephrine in each spray. It fits in your pocket, it's less evasive than jamming a needle in your thigh, you can take more than one inhale if you are still reacting (the pen can't), and most importantly it works! (for me at least)
Bronkaid, Primatine Mist, etc. are asthma inhalers that deliver .25 mg of epeniphrine in each spray. It is less invasive than an IM injection and it really works well for my anaphylactic condition to sesame, pumpkin and eggplant seeds. The problem is that they are taking it off the market (I'm not sure if it's permanent) because it contains CFC's that ruin our atmosphere. Does any one know anything about this topic?
Please respond to me on:
1) Alternative medications
2) The link (the protein I am allergic to in all three instances) between the seeds that affect me
3) Can I sue a food manufacturer who has not labeled their ingredients correctly if I have experienced a life threatening reaction?
4) Any cures on the 1 yr, 5yr, and 10yr horizon? "
Comment:
I am not sufficiently familiar with Bronkaid to comment on that. It may be just as good as the inhaler we have mentioned on our anaphylaxis page for all I know. You should consult a physician, preferably an allergist, before dosing yourself for this problem with epinephrine (adrenaline) in any form. In answer to your questions:
1) Listed in
the AAIR website.
2) I was not aware of such links between these species,
but people sensitive to one kind of seed commonly seem to react to some
others. You may be describing something we should all know about. Thanks.
3) I'm not a lawyer. I guess you could.
4) Lots of work is being done,
but it's difficult to predict if any of the approaches will yield a generally
available product within that time. Certainly hundreds of millions of
investment dollars are going into the attempts.
Click here to submit your contribution on this topic
It wasn't just brazil nuts!
Peanuts and even pine kernels turned out to be dangerous too.
D.T. (England) writes: (19 Dec 1998)
" After reacting badly to a brazil nut, doctors told me just to avoid those. But I found when I was in France that the red packets of crisps were peanut flavoured, and I reacted to those too. Then I reacted to pesto, which is made from pine nuts. So I seem to be allergic to those as well. Obviously, the warning to avoid brazil nuts alone was not enough.When I eventually did get to see an allergy specialist, he said that it is common for people who are allergic to one kind of nut to react to other kinds too, and that things like pine nuts and poppy seeds sometimes do this to nut-allergic people like me.
So the lesson is that if you are allergic to nuts you should see an allergy specialist, otherwise you might not get the proper warnings. I think that we need to get more information on what common foods contain nuts because this may not always be common knowledge. "
Comment:
Few doctors in Britain have much training in allergy during their student years or subsequently. As you have found out, nut allergy is not such a simple thing. In the UK, the British Society for Allergy and Clinical Immunology can advise about specialists in your part of the country.
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Negative test, but deadly allergy!
T.S. writes: (20 Nov 1998)
" I found your site very informative. I have suffered with anaphylaxis due to pecans,walnuts and almonds for years, first noticed when I was 5 yrs.old. My mom kept giving me Hersey's with almonds and did recognize that it was causing me to get sick. A very unusual thing did happen. I had an allergy test (stick marks on my back) and the results said I was not allergic to pecans. I am deathly allergic to pecans! Since the peanut is a bean, I am OK with it. Any nut that falls off a tree though, I can die from just rubbing it across my lip. "
Comment:
No allergy test is totally reliable, as your story illustrates. Though you are right about the peanut being like a bean and not like tree nuts, many people who are allergic to one are also allergic to the other.Click here to submit your contribution on this topic
School policy on anaphylaxis
Karla (Canada) writes: (26 Dec 1998)
" Anyone interested in developing school district policy on dealing with anaphylaxis can contact Heather at aaia@silk.net She has some policies developed in British Columbia, Canada. they are currently petitioning the Ministry for a provincial policy. "
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Raw vs roasted nuts
Anonymous: (6 Jan 1999)
" I am 42 and about 10 years ago I noticed that whenever I ate raw nuts I would get stomach aches and my throat would become irritated but I could eat all the roasted nuts like Blue Diamond almonds different flavors and no reaction. Last night I ate some raw almonds, and not getting any connection from the past, my throat nearly closed within about 5 minutes of eating these nuts. Luckily I did not need to be hospitalized but the effects have lasted over 18 hours now. Can cooking or roasting these nuts make them less likely to affect someone. What is in the nut that would be extracted while roasted? I can eat pistachios, peanuts, and almonds roasted, but raw, if I have one or two my throat gets itchy and swells a little, and with many I almost died. "
Comment:
In the case of many foods, heating destroys their ability to cause allergic symptoms because heating alters the protein (think of egg white). Probably what happens is that refolding of the protein molecule means that parts of the protein previously on the outside are now on the inside.However, most people with nut allergy seem to react to both raw and roasted nuts. So your story is interesting, and I'd be interested to hear the experiences of others if they happen to know because of unintentional experience. PLEASE DO NOT TRY THIS DELIBERATELY.
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The Accident and Emergency Department said it was not anaphylaxis.
J.D. (UK) writes: (7 Jan 1999)
" I am a father of a young baby boy (2 yrs old) who had a reaction only four months ago. The reaction took place after eating a doughnut which did not contain any nuts itself but may have been contaminated by an adjacent product.My wife remembered me telling someone about giving anti-histamine syrup in the event of a reaction. This she did and brought our son to hospital in our own car ( oversight; we should have called an ambulance). She was shopping only 10 minutes from the local hospital and by the time she arrived he was going blue around his lips.
On admission to hospital he was given prednisolone to stop the reaction, but:
When my wife told me of this I immediately contacted our GP who issued two Epipens and said what my wife described did in fact suggest our son was having a shock. Also on our GP's suggestion we took our son to a specialist hospital and they confirmed he is highly allergic to all nuts and dust mite.
- We were told by the Doctor in Accident and Emergency that he did not think he had an anaphylactic reaction.
- We were not even told to mention it to our GP.
If a doctor in A&E misjudges a call such as this then we must ensure that we educate doctors and take all steps necessary no matter how severe to protect our loved ones. "
Comment:
I strongly recommend that you join The Anaphylaxis Campaign.Click here to submit your contribution on this topic
Are there kits to test for nuts in food, e.g. in restaurants?
A. J-H (UK) writes: (10 Dec 1998)
" Is there any way that you can test for the presence of nuts in food without risking an attack? Is there a test kit? I have recently suffered a severe reaction which resulted in hospitalisation. The reaction occured in a Chinese retaurant even though I was assured that no nuts were used. "
Comment:
There are kits, but they are useless for people like you, and not affordable. They are for use on bulk supplies by manufacturers, as an extra safeguard.When you think about it you will realise that if you eat in Chinese restaurants or other oriental restaurants, you are liable to eat nut sooner or later, despite your best intentions and those of the staff. In fact non-oriental restaurants and hotels are not that safe unless they have very special arrangements in place. For example some fast food restaurants do not sell any products with nuts. Without such a precaution, there is always the possibility of cross-contamination of foods, even if you and the waiter understand each other's language properly. For a more detailed answer about restaurants, see the section "How can I eat safely in restaurants?" on the nut allergy page. This was written in reply to your query.
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Anaphylaxis from milk.
L.S. (UK) writes: (10 Jan 1999)
" Very interesting site - my son who is 5 months has had a serious anaphylactic attack from milk (regular formula) and Farleys rusks. Are there any mothers out there with similar problems? "
Comment:
I hope he has been seen by a suitable specialist.Click here to submit your contribution on this topic
Pecans in french bread.
P. S. (USA) writes: (18 Jan 1999)
" My daughter is allergic to nuts but not peanuts. Yes, be careful when eating out. We had french bread sticks with tiny pecans and then a quick trip to the emergency room. "
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Difficulty in getting referred to a specialist.
Supermarkets and the Food Standards Agency.
Adrenaline (epinephrine) pens.
B. (UK) writes: (20 Jan 1999)
" I have had asthma, hay fever, eczema and allergies to about everything for 35 years now - and a degree in the subject - still doesn't help though. My main concern now is nut allergies - I have been allergic to these all my life (+ fish) and am getting fed up at the increasing problems I'm finding.
One of your correspondents was praising the supermarkets - I'm finding just the opposite - all they want to do now is disclaim everything - even white bread, plain chocolate, etc.- I'm going to write to all of them about this - I'm getting fed up - anyone want to join me? It's not good enough! Also - has anyone written to the Government about the Food Standards Agency - I picked up a leaflet in my local supermarket - they're asking for comments (and have published a White Paper) on food standards, safety, etc. - so I've written in about food labelling with specific reference to allergies - I think everyone affected should do so.
My doctor won't refer me to an allergy clinic, (even though I went before; I want my IgE levels re-testing and some up to date advice - my doctor knows little about allergies) nor can they afford Epipen, etc - so I'm still on Mini Jet, which is OK by me. But - does anyone make a carrying case for the things? Mine are always getting broken or dirty in my handbag, bike jacket, etc. Why can't they make one which is re-usable, like the diabetic pens - seems they still have a long way to go on product development.
Finally - do you know if anyone has any success with desensitising to horses yet? I'd love to be able to ride again. "
Comment:
Refusal of General Practitioners to refer patients for serious allergy problems, even those who specifically ask to be referred, is common in the UK. The ignorance of doctors on allergy is understandable, as UK medical schools give almost no teaching time to this subject. If the doctor is not given a basis of knowledge during the student days, he or she is unlikely to know that any updating is worthwhile. If, as often happens, the little teaching they have had is misleading, matters are worse. Furthermore, with the growth of medical knowledge it is increasingly impossible for one doctor to be reasonably good across the whole spectrum of medicine. Basically I would say that if your condition requires you to have adrenaline in any form, you must have the opportunity to deal with a specialist in allergy. This is also the recommendation of The Anaphylaxis Campaign, which you should join.
The Mini Jet, often prescribed in the UK, is not ideal for use by patients. This is why experts in the subject prescribe the Epipen (some, including myself, prescribe the Anapen in the UK; in other countries other devices exist) even though it is much more expensive. You are right about protecting the device when you are carrying it; everyone else has the same problem. The Anapen has a nylon carrying case, which is free if you just send in a registration form which will also get you a reminder when the Anapen needs replacing. This also enables the manufacturer to contact you should there be a product recall, something which did happen with the Epipen last year.
A re-usable injection device does not make as much sense for adrenaline (epinephrine) as for insulin. However, the Anapen can be refurbished by the manufacturer, though in practice you would get a new one. The reason why a re-usable device does not make so much sense is that few patients need to use adrenaline in practice, so the possibility of deterioration in the device between replacements is much more of an issue. Manufacturers introduce improvements over time, and full replacement means you get the latest version. With an insulin device used daily, there is not much chance that the device will have been modified between one day and the next! The Anapen is not yet a licensed product in the UK. This makes it a little harder to prescribe and dispense, but we don't find this a great problem. It is available from Allerayde, address in the BNF (British National Formulary).
Horses. - I don't know the specific evidence, but in general desensitisation to mammals works to an extent although avoidance is much the preferred approach. Desensitisation and continuing to ride is not an option any mainstream specialist in the UK would encourage, given the current state of treatment.
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Cadbury's white Chocolate Fingers; could a recent batch contain traces of nut?
J.W. (UK) writes: (1 Feb 1999)
" Have there been any reports of nut allergy reaction to Cadbury's white Chocolate Fingers? My daughter (age 9) has an allergy to cashew nuts and avoids all nuts. Today, she vomited profusely after eating the above, although they were not labelled as containing nuts. Cadbury's say they usually are nut free, but cross-contamination may have occurred from their Christmas speciality lines - and that they won't be repeating these nut products next year! It would be reassuring to know this was actually the cause of the reaction - which was milder than the anaphylactic reaction we have seen with cashew nuts previously. "
Comment:
I understand that Cadbury's are extending their "May contain traces of nut" labelling in the near future and taking other precautions to avoid future doubt about trace nut content.
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Missing label
A.J-H. (UK) writes: (6 Feb 1999)
" Recently when in Tesco I found that the label on a packet of sandwiches which advised of the presence of nuts was missing! I discovered this purely by accident by looking at another packet of the same sort which was marked. I would therefore suggest that anyone with an allergy to certain foods should check more than one packet."
Comment:
It would be better to let Tesco know, so that they can improve the procedure for making sure the label is there. This kind of error is clearly more likely with some products than with others. To err is human, and I guess sandwich-making and packing is more error-prone than the production of many other foods.
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AsthmaHaler Mist, an adrenaline (epinephrine) inhaler
Eric Birbeck
" I am the Anaesthetic Dept Manager at the Royal Hospital Haslar and I have contacted you in the past. I suffer from anaphylactic reactions to Sesame Seeds and Oils. Since contacting you last year I have been tested further and found to be crossing over allergy wise to other nuts as well, and I am now also borderline asthmatic. I have obtained AsthmaHaler Mist, having sourced the UK supplier through our hospital pharmacy. I then contacted my doctor who kindly prescribed for me. I am quite happy to reveal the supply to any caller via e-mail should you be happy to post this letter for general view. I depended on the Medihaler Epi in the past, but have found AsthmaHaler Mist to be quite suitable, although the mouthpeice has to be re-assembled each time for use. I have over the past years been able to gauge my symptoms (some say that this is dangerous but I disagree). As you are aware the uptake of inhaled adrenaline is quicker than injections, though inhaled adrenaline can wear off more quickly. I do keep my Epi-pens to hand at all times as back up. You have a good web site and please do keep up the good work. Only too pleased to help if called regarding the information."
Comment:
I had this information on my website till recently but was asked to remove it because this is not a licensed product in the UK, which means the suppliers are not allowed to advertise it. They did not do so, but received a complaint (from someone connected with a pharmaceutical supplier in the UK?) about the reference and did not want to be placed in an embarrassing situation and therefore asked me to remove the information. Clearly I did not want to cause them trouble, and obliged. However, last time I checked we were still living in a free country and I can't see how your offer to help can break any law or any ethical rule.
I can easily see how the complaint breaks an ethical rule, the rule that a person should not stand by idly when another's life is in danger, let alone obstruct help offered by others.
In fact, this officious attempt to interfere with free speech seems to me to be more likely to bring the industry into disrepute than to protect its reputation.
The complainer did not make his or her identity known to me, but instead leaned on the importer, who is vulnerable because defending oneself against a charge of unethical conduct is expensive even if the charge is wrong and because of the danger that some of the mud would stick.
Of course the Internet provides free access to information on drugs available in some countries but not others. The AsthmaHaler Mist is freely available in the USA. About half the people using the AAIR website live in the USA.
P.S.: The Medihaler Epi was withdrawn because of a change in regulations, not because of any truly significant problem about the product. Regulations can damage your health. This is because the rule-makers are quite unable to foresee quite a few consequences of their actions and do not build in enough safeguards against unforeseen consequences of their rules.
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Nut-free zones on aircraft now ignored
D.K. (UK) writes: (27 Feb 1999)
"I read with interest your information on air travel. In particular I noted the US directive to provide peanut free zones.I am trying to book our family holiday to Florida. I have an option on a Continental flight which I must take up on Monday. The Travel agent couldn't have been more helpful. Unfortunately Continental has recently been advised ( 1/2/99) that they no longer need to provide a peanut free area. As it is the weekend I have no reply to my 4 (at the last count) E-mails to Continental Airlines. I have even E-mailed the US Dept of Transport to check what the correct position is. I am still awaiting a reply there too.
Our Travel agent phoned 2 other airlines who were completely unaware of any Govt directives regarding peanut free zones ( Delta & American) It looks like we will have to travel all the way down to Manchester instead of Glasgow to use a Virgin flight as they will substitute peanuts with something more suitable in the economy class, however, they will stilll serve them in First and the other class.
My daughter is only 4 but she realises that all the hassle we are coming up against is due to her allergy, as it is with many attempts that we have when we try to eat out as a family.
I am exasperated, but our daughter's life has to come first.
Can you please let me know, if indeed you know it, what the latest is from the US Govt. on flights & peanuts? "
Comment:
I'm as baffled as you are. It sounds as if the earlier announcement about nut-free zones has turned out to be nonsense. All the more reason for supporting the airlines which do help. Let us know if you get a reply.
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Nut-free zones on aircraft: airlines differ
DA.B. (UK) writes: (18 Mar 1999)
" We are planning a flight from Belfast .N. Ireland to Sydney Australia in the near future .Our eight year old daughter has a severe peanut allergy so I have been making enquiries with airlines that fly on this route. The only airlines I have found so far which have a policy of not serving nuts are British Airways and Quantas airlines. Air New Zealand used to have this policy but have now changed it, however they will try to accommodate nut allergy sufferers. Emirates air and Singapore air were distinctly unhelpful and said they would serve peanuts. Malaysia air said what we needed was a private jet ! Cathay Pacific also serve nuts.I feel that banning nuts from all flights would be no big deal ,there are plenty of perfectly acceptable alternatives.
If there was more public awareness of this problem perhaps this would happen. I would like to hear from anyone who has information on any other airlines. "
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Going home or going NUTS!
Michelle (Australia, Email:groovers@dot.net.au) writes: (1 April 1999)
" I am originally from Ireland and now live in Australia. The issue of travelling with nut anaphylaxis living so far from home (Dublin) is a growing problem for me because of so many airlines misunderstanding the problem. Up until 4 months ago I had travelled to America, Canada, and Europe with no major hassle.I have just returned from Ireland to Sydney Mar 99. Before I and my partner left for four months, we were subject to 2 airlines cancelling our flights after our tickets had been issued.They already had received my medical certs 2 weeks prior and led us to believe that we were flying as scheduled. With other factors involved like arranging people to move into our apartment, loss of work trying to find an airline with only 2 weeks notice for such a long way, and lots of other unnecessary trauma, we filed an anti-discrimination case against them to hopefully set a precedent for other travellers in the future. The issue needs to be addressed legally to set a standard for allergy sufferers who wish to travel.
Due to the anti-discrimination's secrecy act, I unfortunately cannot disclose any information about the case at this time but I can say that it is just one against two major airlines companies. Not easy! As I am solely in this battle, I would like to know if there is anyone else out there who would like to include their voice aswell and help get this issue known. Airlines and allergies is a growing problem and something needs to be done about it.
I would also be interested to hear about any medical journals with published articles on "airborne/nut related topics" along with previous airline cases, (if any) in the past. This would be a great help in making a step forward enabling us to be able to travel at ease. If you have any relevant information, please do not hesitate to email your comments to Michelle at:
groovers@dot.net.au
With the last 4 months of research I've been doing, I have learned a lot about airlines who will fly peanut-free. I tried to answer some of the other topics to help others but was unable to at the time. Could you let me know when that is possible....thanks! RE: To your topic about Nut-free zones on airlines... 18th mar 1999 I returned from Dublin to Sydney 26th March. The airlines I used were British Midlands and Olpmpic Airways. I found British Midlands to be superb and all their food was also labelled which was a pleasure to see. I took my own food with me on the Olympic flight and had 4ltrs of oxygen requested just in case.
I found their service to be shocking however they did provide a peanut-free flight all the way to Sydney. If you have your own food which is a lot for the whole journey, maybe foods that can be heated up with hot water is good as the special meals that were made for me were not always supplied throughout the flight. Anyway better safe than sorry... British Airways and United Airlines were two other airlines that I used in the past and I found to be excellent.
I am an active member of the Anaphylaxis group here in Australia so if you would like to contact me via email on any queries while you look for your flight to Sydney, please do so and I will help you out as much as possible.
RE:Travel and peanut allergy. 10 july 1998
If I knew where this person was travelling to and from...to Ireland I think, I could recommend a heap of airlines to go with.... "
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Pine nuts.
C.W. (Texas) writes: (21 April 1999)
" I'm very allergic to pine nuts, and discovered it a few years ago when pesto was the rage in cooking. Many chefs included pine nuts in their pesto, but they were so ground that they could not be seen. Also, I've had an allergic reaction from eating a piece of candy with pine nuts in it. It was the first time I met my future parents-in-law and they had to rush me to the hospital. What a great impression. Like you mentioned about sesame seeds being small and hard to detect, the same can also go for pine nuts. "
Comment:
Food manufacturers and nut-sensitive people, please note. By the way, doesn't ALL pesto contain pine nuts? A similar situation occurs with other nuts, e.g. saté (also spelled 'satay') doesn't just contain peanuts, it practically consists of them. Tahini (also spelled 'tchina') is sesame seed paste. Houmous (Humus, hummus, chumus are amongst other spellings) is made from chickpeas, to which some peanut-allergic people react, some with fatal results, but also contains sesame seed paste (tahini, tchina).A good rule for any allergy diet: IF YOU DON'T KNOW WHAT'S IN IT, IT DOES NOT PASS YOUR LIPS or even touch them. The exception is food testing under the supervision of an allergy specialist who is expert in this.
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Pouches and boxes etc. for injection kits.
MM (Seattle, Washington) writes: (17 Oct 1999)
" Hi Martin and everyone:Thanks for the thoughts on the containers. Here, AnaKits come in hard plastic boxes. When I started carrying an AnaKit for exercise-induced anaphylaxis, here's what I did. At a camping goods store, I bought a nylon pouch with a velcro closure which was originally designed to hold small tent pegs. It's just the right size to carry the AnaKit and a small bottle of liquid Benedryl, which I marked with dose amounts. I can switch this between purses very easily; it settles nicely to the bottom where it is convenient but out of the way. I carry a separate AnaKit in the fannypack which I use while exercising - the pack carries my Walkman and a spare tape (I listen to books on tape while walking) as well as an AnaKit and similar bottle of Benedryl. Together, this means that I always have the medicine within easy reach.
Good luck everyone. "
Comment:
I agree. Our local climbing and cycling shops sell similar things. Let us know the source and the price.
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The curse of "May contain traces of nuts"
Georgina C. (UK) writes: (17 Oct 1999)
" As a sufferer from both nut and seed allergies I find it very confusing to read the labelling on food products. Although this has improved over the last few years, many manufacturers limit the choice of foods available by saying "may contain traces of nuts". Is there any way of knowing the true contents of these foods or should I avoid them completely? "
Comment:
"May contain..." labelling is driving many of your fellow sufferers round the twist as well. In most cases, the food in question will be safe; it's just that the manufacturers can't guarantee it. Having spoken with a food manufacturer friend about this, their problem is worse than it seems from the outside. He uses no nut ingredients anywhere in his factory. But he reasons that he cannot guarantee that one of his workforce will not eat or handle nuts outside the factory and bring small fragments in one day on clothes or a watch-strap. Given the fact that some people react dramatically to such tiny traces, he feels he needs to play safe. The alternative might be to use 'clean room' conditions, but that would put him out of business.The level of risk will vary. For example in a bakery it may be completely impossible to avoid sesame seed contaminating products which should not contain it. At the other extreme are people like my friend, where the true risk is close to negligible.
Test kits are available for manufacturers to check that peanut is not present in ingredients. They are completely impracticable for personal use. Sadly, complete avoidance remains the safe advice. Whether I would follow that advice strictly if I were allergic to nuts might depend on how badly I had reacted and on other factors. The fact is that taking risks is exactly what causes people to die from nut allergy.
However, I do suggest that people like yourself should swap tips about treats and other foods which are safe and which others may not know about.
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Sesame again
B.G. writes: (25 Oct 1999)
" I have a life-threatening allergy to sesame and any of its derivatives. I have had this allergy for 9 years now and have become extremely sensitive. I find it is very difficult to try to limit exposure to sesame since sesame seeds are in a lot of foods, cosmetics, hand lotions and medications. It is a daily task to review everything I come in contact with to make sure it is sesame-free and safe. I am glad to share any information and experiences I have had with "accidental" exposure to sesame which have put me in the Emergency Room many times. "
Comment: (amended 1 Feb 2001)
Nestlé launched but later withdrew sesame-coated bread sticks specifically for children from the age of twelve months in the UK. At the moment we see far fewer patients allergic to sesame seed than to nuts. But we don't want sesame allergy to become more common.Apparently Nestlé may have decided to rely on advice that children are only likely to become allergic to foods if they are exposed to them before the age of nine months. Children do seem more likely to become allergic to things they eat during part of their first year. There is evidence for that. But if there is evidence that it can't happen later, I am unaware of it. I know of no evidence that all or even most children who are allergic to nuts have become allergic to them in their first nine months and would not do so later in childhood.
The argument that only children with allergies or with allergic parents run any risk of sesame allergy and can easily avoid the product is obvious nonsense. Many people who have allergies don't know it. People who just have the genes which make allergies more likely hardly ever know it.
Your email is timely; it looks as if it is important to increase awareness of sesame allergy.
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Coordinating help for nut-allergic children at school
E.K. (UK) writes: (23 Nov 1999)
" Our son has anaphyalctic reactions to eggs milk peanuts and other nuts and dog saliva. He also has other milder allergies, eczema and asthma. We are facing what seems like a mammoth task of sorting out a 'normal' education for him. We are members of the Anaphylaxis Campaign and the British Allergy Foundation.We have found that there are many agencies who manage the care of allergic children in schools but they seem widespread and fragmented - a nurse here, a doctor there - some working for the Education Authority and some for the National Health Service. Co-ordinating these individuals so that we can all work together with the school is the problem and seems to be down to us as the parents indeed our GP and the schools themselves aren't even aware of some of the individuals who are working within the local authority. We would like to speak to others who have overcome these hurdles. Has extra funding been found to employ a 'minder' for a child with similar problems? "
Comment:
Personally, I think that funding 'minders' for children with nut allergy is not a realistic option. The lack of coordination may not be surprising in that the scale of nut allergy is such a recent problem. There may be an argument for strengthening the School Nurse system. Nurses can play a far wider role and will be useful to other groups of children too, including those with asthma, also an allergic problem in children. Children with epilepsy, diabetes and other non-allergic health problems need help too. However, my own experience is that it is beneficial for particular nurses to develop special expertise in one or two areas, and for nurses with different expertise to help each other out.
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Nut-free chocolate?
Anonymous, probably USA: (10 Dec 1999)
" Do you guys know of a chocolate shop or a place to order chocolates safely for nut allergic people? I know places such as Godiva , Fannnie Maes , Hersheys and Whitmans are unsafe - no doubt. "
Comment:
It's a big problem. Milk-free chocolate is easy; go to a Jewish district and get Kosher (Parev) chocolate. Nut-free is infuriatingly difficult because it is so difficult for a manufacturer to guarantee freedom from contamination. In a litigious world, they are bound to consider their own safety as well as that of customers.If your search is successful, I'd like to know. We need the answers separately for different countries.
In Britain, the large supermarket chains are very helpful and are the best source of information. Even then, manufacturing or labelling mistakes inevitably occur from time to time. I guess the economics of the manufacturing business in a competitive world place limits on the reliability of precautions manufacturers introduce. The moral is that even if you think a manufactured food is safe, mishaps will occasionally happen, and your epinephrine (adrenaline) needs to be available.
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"May contain traces of ... "
F.L. (Australia) writes: (28 Jan 2000)
" I am concerned about the recent disclaimers on many products (in our case in australia, Arnotts biscuits and Uncle Toby's brand)These companies are market leaders for many basic biscuit and snack foods. "may contain traces of egg, peanuts seed or dairy".The ingredient lists don't contain these ingredients necessarily and yet this is now (since early 1999) on every single product manufactured by them. This is a SIGNIFICANT inconvenience to a parent with a child with allergies, and a real "cop-out" by these companies to not be responsible in the manufacter or storage of these products. Maybe they should also say "may contain traces of bacteria and cochroach dung"? It is clear that this labelling is driven by fear of litigation, however the push should be more towards honest labelling. My fear is that every food manufacturer will tread the same path and limit and isolate even further every allergy patient from being able to function as a relatively normal person. This may also be in breach of our pure food act but I am yet unaware of this being fully tested. comments and ideas on this would be appreciated. ps: I am very aware of food allergy risks as my 5 year old son goes nowhere without his adrenaline, epipen. "
Comment:
Your concerns are shared vigorously by every parent of a nut-allergic child I meet.
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Why me suddenly? I was eating nuts for my health!
Dave d F (UK) . writes: ( Feb 2000)
" Whilst searching for brazil nut allergy info, I found your site.I did not find anything in your faqs or correspondence page which answers my question, so perhaps you will be able to introduce something on this. It is about how an allergy develops (in an adult).
I am aged 52, and have never knowingly had any allergies. I have eaten many nuts of all kinds over the years.
Some time ago I read of the *beneficial* properties of eating nuts regularly, and started having approx. two pre-shelled brazils a day whilst at work. For 6-9 months all was fine, but now I notice a tingling on the tip of the tongue and perhaps a slight dizzy feeling, very soon after eating a brazil nut.
QUESTIONS...
a. I presume I have developed this purely through eating them regularly? If so, then surely the articles advising on the benefits of nuts should also include advice on how to eat them in a way that minimises the risk of developing an allergy and thus having to avoid them altogether!
b. On a more personal level, do I now have to avoid all Brazil nuts for the rest of my life? Should I consciously also avoid other nuts as far as possible, or continue to eat them occasionally in small quantities at home as I have always done. "
Comment:
Firstly, like you did, I eat nuts believing they are good for health. This despite being highly familiar with nut allergy in my patients. I do not know of any way of eating them which would minimise (or even maximise!) the risk of becoming allergic to them.
I have heard an acknowledged expert claim there are figures showing a correlation between nut imports per head of population into a country and the prevalence of nut allergy. I do not know the original figures, or where he got them from.
It is a well-established and conspicuous fact that countries with high peanut intakes, such as India and Indonesia have virtually no nut allergy.
Clearly some vital bit of information as yet escapes us. There is a well-established line of evidence which relates prevalence of atopic disease to high standards of hygiene associated with Western living styles, though. This could help to explain the apparent paradox.
If you were my patient I would indeed advise avoidance of all nuts, and tell you that your brazil nut allergy is likely to be life-long, according to our present information.
But our knowledge is seriously incomplete, not surprisingly, since the current wave of nut allergy appears to be a rather new phenomenon. I would not be too surprised to see some of this 'orthodoxy' overturned in the future. Meanwhile our advice to patients is based on our current 'knowledge' and general consensus.
This is clearly not the enlightening answer you were hoping for; as so often in medicine, "we need more research".
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Fury: nuts in Indian restaurant meal despite requests
PS (UK) . writes: ( Aug 2000)
" We like to have an indian takeaway on a Friday night, but my husband is allergic to nuts. Every time I order I always say I don't want nuts in anything, because my husband is allergic. We have been going to one particular restaurant for quite some months and for the last couple of times, they have put nuts in the food, even though I requested they didn't.I am now so furious I am sending an article to my local paper about them.
Why can't all restaurants put a sign on their menu saying there are no nuts in anything. They do it for vegetarians, who presumably wouldn't die if they ate meat, but not for people with nut allergies. I think there should be a campaign to start this type of food labelling.
I would be very willing to participate. "
Comment:
I think your fury is very much misplaced. Firstly, many restaurants, including Indian ones, already do what you ask. Look around and you will find them. These practices are spreading, but the restaurant trade has a far harder task than the makers of manufactured foods. The Anaphylaxis Campaign (see the AAIR website) will help you understand what is being done and plays a wonderful role in improving the situation; I hope you are a member.
Years of experience make it obvious that people other than the nut-allergic person and their closest family cannot in practice avoid mistakes. This applies even to relatives and friends, however well-intentioned and intelligent, who do not live with the problem daily. I honestly do think it is unreasonable to expect the staff of an Indian restaurant to be infallible, unlike all other human beings. You may not be aware (in fact I'm pretty sure you're not) of the linguistic and cultural problems which may make it truly hard for Asian staff to understand you correctly. When I spent some months in Pakistan and ate nuts frequently in the presence of excellent speakers of English, they never once referred to nuts as nuts, but always as 'dry fruit'. This is a characteristic type of mistake made by all people in second languages; you would make the same type of mistake in French or Italian or whatever, unless you are exceptional in having for example spent a large part of your childhood in those countries. 'Dry fruit' is evidently a literal translation of an expression in Urdu, and is the normal equivalent of 'nut'. So it seems to the speaker that he or she is speaking perfect English. Even if the person has come to know the word 'nut', it may not mean to them exactly what it means to you.
This is only one small illustration of a problem. There are many others. It has nothing to do with Asian restaurant staff being mentally defective or ill-intentioned or lazy, any more than those attributes apply to me or you. They are normal human beings, and you and I are not perfect either. Fury is just as misplaced towards them as it would be to you or me if we made an honest mistake, or even one due to the sort of carelessness into which we all lapse sometimes.
In fact non-Asian restaurants are also a source of serious reactions to nuts. Language and culture have nothing to do with this, of course. The fact is that the combination of normal human error and the presence of nuts in a kitchen is sufficient to make occasional disasters inevitable. The risk appears to be lower in non-Asian restaurants, surely because the use of nuts is less pervasive and because language and culture don't add to the problem.
Even in a non-restaurant setting, ordinary people have great difficulty in recognising the presence of an ingredient if it goes under a different name, even one which might be obvious to you or I. For example, most people need education to understand that a milk-free diet should not include 'non-fat milk solids'! Such people are completely lost when it comes to whey, casein, and foods with no stated ingredients. Since nuts and seeds are often processed into ingredients with other names (e.g. sate, pesto, houmous) real alertness and knowledge are needed.
Another source of mistakes is that someone preparing food may, like anyone else, be distracted or preoccupied. Given the trickiness of the task, just put yourself in the position of someone who is in the throes of marital or financial trouble, or who has a close relative who is very sick, or who has a raging quarrel with someone else at work. I hope you do not find it unbelievable that, just sometimes, a customer's nut allergy will not be foremost in their minds all of the time. And that's not allowing for the possibility that once in a while the most conscientious restaurant owner will take on a member of staff partial to alcohol or illegal drugs. Huge quantities are sold: do you think no-one using them ever works in a restaurant?
Of course, if you could prove that a reaction your husband suffered was due to wilful neglect or culpable carelessness, in other words negligence, you would have a case in law for compensation. This would be a poor recompense for a dead husband or even one who had suffered a frightening reaction, but would help to make restaurant owners think. Legally, you would be right, but surely a sensible person would avoid the risk when it was demonstrably present.
I often discuss this with members of the Anaphylaxis Campaign at their meetings. The members usually argue that they should have the freedom to eat anywhere they like. To me, this seems a bit like arguing that someone who is blind and deaf should have the same right to cross the road unaided as anyone else. Freedom to do something it is possible to do without, but at the risk of losing one's life, is something people do in sports, and in that context I support it. Risking your life for the sake of a restaurant curry, when you can perfectly well have a home-made or factory-made one, seems to me to be turning eating into a dangerous sport. There may be occasions when a sensible person will decide to take the risk, taking what safeguards he or she can. But I believe that for a nut-allergic person, eating in restaurants, especially Oriental restaurants, is taking a definite and inevitable risk of a serious reaction which will on occasion be fatal.
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An instructive story
JS (USA) writes: (17 Nov 2000)
" It appears I've been allergic to many nuts for most of my life, but was never really aware of what that meant.When I was a kid, we always used to have nuts around the house for the Christmas holiday season, generally a big bowl of mixed, in the shell nuts. I used to eat them all back then, except the brazils, which I didn't have the strength to crack open. One day I got one open, popped it in my mouth, and immediately started choking. I eventually got over it, but from that point on the only nuts I could still eat were almonds, cashews, and peanuts.
At that point my parents thought it was all in my head. I'd had a chunk of nut go down the wrong pipe, and the rest was just psychosomatic, they said. I always thought there was more to it.
My sister, unfortunately, proved it. She thought I was just trying to get attention, so a year or so later, she baked a cake and used a small amount of nut extract, not even enough to taste, to prove I was faking.
Surprise! I started gagging and turning all those pretty colors you turn when you're choking. She almost died on the spot and still apologizes to this day, as well she should. Again, I got over it, and so far always have. However, thanks to your site, I will be seeing a doctor about this for the first time. It looks like I've been pretty lucky so far, as that first brazil was now some 32 years ago and I've had very few really bad reactions.
This last week, however, has been bad, which is why I came looking for information in the first place. At work was a dish of what appeared to be peanut butter cups. I ate one and went on my way. A few minutes later I started feeling the tingles. Turns out it was a pecan butter cup. Didn't even know there was such a thing. Later that day I found out they make caramel corn with pecans also, having tasted some. Knowing that, in my case at least, I can sometimes dull the effect by eating something like bread or a cookie, I got some Famous Amos chocolate chip cookies from the snack machine. Turns out they have pecans in them, also. Yikes! 3 in one day.
The next day was my worst reaction in several years, possibly due to the past day's adventures, though still not enough to get me to a hospital. This time it was from almonds, but I think (hope!) it was beca