Food Allergy, No Food Allergy – Mistakes Made, Lessons Learned
Jul 27 2010 in All Site Articles, Food Allergy News by Ruth LovettSmith
I’ve been a food allergy mom for 5+ years and you would think that I’ve got it all figured out by now. Well times they are a changing. There are new studies, new diagnostic tests, new theories, new potential treatments and more. So what’s a food allergy mom to do with all this “new” information?
No really, I’m asking you because I’m not sure I have all the answers.
We’ve been avoiding peanuts, tree nuts, eggs, sesame and soy for about 5 years now. I say we, but after the first two years it turned to our son J avoiding all those allergens. We, the family, avoided peanuts and tree nuts. By avoided I mean; did not even allow a trace of peanuts or tree nuts in our home.
At about 18 months to 2 years, J touched a cutting board I had chopped walnuts on. He touched his face and in an instant his eyes watered and swelled nearly shut. His pale face became red and blotchy and started to puff like a blow fish. The worst was the raspy cough that brought up gobs of clear and gooey liquid. We were lucky that day that J made it.
We had suspected allergies of all sorts but our pediatrician told us to keep J away from whatever he reacted to – be it dogs, cats, food and more. He didn’t need allergy testing.
Mistake number 1: Trusting a pediatrician with a matter that is not his expertise.
Upon what is now known as “the walnut incident”, we immediately scheduled food allergy testing with an allergist that came well recommended. We explained the walnut incident as well as other past experiences where we couldn’t quite identify – what caused the hives on one occasion and the red watery eyes on another. Based on that information, the allergist did a large panel of skin prick testing to numerous food and environmental allergens.
Mistake number 2: Testing for allergens without a history of reaction to them.
J came back with positive test results to peanuts, tree nuts, egg, sesame, soy, dog and several environmentals like dust mites,various pollens and more. His negative results were to cats, shellfish and some others that I don’t quite remember.
The allergist said soy was an iffy one. It was quite a large skin reaction but could be because of peanut and the fact that soy and peanut are both legumes. We were told to avoid both regardless.
Mistake number 3: Not asking for clarification or if there was additional testing to be sure the results were true.
So here we are five years later fresh from our annual allergy appointment. (I’ll add that we are no longer with the original allergist.)
We did skin prick testing, blood testing and a new blood test for peanut that is not yet FDA approved in the United States. (More about that in a future post.)
All the skin prick testing was positive (peanut, tree nuts, egg, sesame and soy). The new blood test for peanut was also positive. We are awaiting the blood testing for the other allergens.
Our current allergist said that skin testing is typically more sensitive and accurate, but that we would consider the blood results when they came in. We discussed potential challenges to soy and sesame as well as a recent study and treatment in regards to egg. These discussions were based on no known reactions to soy or sesame, accidental exposure to soy without reaction and accidental exposure as well as increased tolerance to egg.
Based on our experiences and past allergy history, J tried some soy yogurt one day and then soy milk the next day at home. Both times he experienced no reaction what so ever. His is not (and maybe never was) allergic to soy.
(I do not recommend home food challenges unless you have the go ahead from your medical professional, feel 100% confident in doing so based on allergy history and testing and have an EpiPen on hand.)
With soy off our list, we moved on to egg. J does have a history of reaction to raw egg, cooked egg and egg in baked goods. However, we recently learned (by accident) that he is able to tolerate egg in dried pasta, pizza crust and doughnuts.
The study we discussed with our allergist was in regards to egg in baked goods, cooked for 30 minutes at 350 degrees farenheit. Participants that were fed increasing amounts (starting at a crumb) of such a food, over time, built up their tolerance to egg. Many participants later passed an egg challenge.
Our allergist gave the okay to try this at home given our past reaction history and recent experiences. A little over a year ago J had a pretty serious reaction to a gooey undercooked cookie. J is now up to two cookies in a sitting without any reaction. (Keep in mind that these are super crunchy cookies that were cooked for 30 minutes at 350 degrees farenheit.)
He is either outgrowing his allergy (not uncommon with egg) or there is some positive science behind the egg study and thoroughly baked goods theory. I wouldn’t have known about this had I not done the research.
Lessons Learned
Research, advocating and finding a medical professional who is willing to listen, take time and work with you is crucial with any medical condition. While we should definitely listen to the experts and follow their advice, there is nothing wrong with researching, presenting and discussing studies and optional treatments.
Even the best allergists are not on top of the latest allergy news. They are booked back to back with patients, meetings, phone calls and more. It’s up to you to be on top of the most recent news and information if you want to manage the food allergies you are dealing with in a way that suits your family best.
Of course you can simply follow doctors orders and live with the food allergies you have. You can hope you or your child might outgrow some of these allergies. You can certainly learn to live with it. There is nothing wrong with that at all if that is what is right for your family.
That isn’t the way I or my family works. Whether it was food allergies, cancer or some other medical issue; I’m sure I would be doing exactly what I am doing now.
I’ve learned very quickly that no one is as concerned for my or my family’s health and safety as me. I’m not a medical professional and I’m certainly no expert. I don’t have the answers to every question. However, I can read, do research and find the best possible solutions for my family. That has probably been the most important life lesson I’ve learned so far.
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For more information on food allergy testing, treatments, studies and more;
click on Food Allergy Information to visit our Food Allergy 101 page.
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Thanita said on July 27, 2010
You are so right about this one! Especially mistake #1! I have met with a few parents who have told me that their pediatrician said this or the family doctor said that. I always urged them to go to a specialist in Allergy and Immunology. This is not the family doctor’s field of study. Even my family doctor didn’t know the proper way to administer the Epipen. While speaking to my son I had to correct him! Great post!
Thanita
Ruth LovettSmith said on July 28, 2010
Thanks Thanita for stopping by and for your kind comments.
The number one lesson I’ve learned is to trust in myself and that “gut” feeling I get. I’ve found I’m almost always right. :)
Maxima Skelton said on August 3, 2010
Very interesting article and fits in with all our experiences of allergy testing, food allergies and other health issues. Basically it’s up to us to do the research and implement cautiously what we find out. Unfortunately so many people want a quick fix with allergies and sensitivities and there just isn’t one. It’s always a question of trial and error and a lot of detective work. I do feel it’s our duty (and a privilege)to learn as much as we can to help ourselves and our families. However, I also feel that children whose parents are willing to make the effort and the lifestyle changes that it requires are fortunate as I know that all parents are not able (or sometimes not willing) to do this. I do hope your good progress continues – well done!
Lynn Downey said on August 4, 2010
my daughter suffered with migraines from age 7 so we eliminated all foods and then slowly reintroduced some of them although this isnt really scientific what we found out was that sometimes she reacted from getting a migreaine to getting nauseous or just not feeling well, at age 10 she developed IBS another dietary change and again sometimes she reacted other times she didnt {there is a family history on both sides to major allergies she was basically ok for about 3 yrs but the migraines increased in length and severity the worst part was that she would be fine going to bed then wake up in severe pain\\ this effected her emotional and physical development since the meds they could give her due to her young age had their own side effects she had allergy testing blood and she tested highly positive to mold dust mites pollen but really non reactive to almost everyhing else she then developed endometrious and again because of her age 16 i ended up taking her to over 10 physicians before one would operate she had multiple fibroids,cysts and had to have a myoectomy she was in the or over 3 hrs she at his point left school because of all her absences that wanted her to repeat her junior yr even though she hwas an honor student she was then given elavil and orthonovum to see if the endometrious could be controlled and the elavil to help the migraines the elavil made hergain weight and enotionally a wreck– imetrex was then tried but it is most effective when given if an aura or precursor so it rarely worked and again the side effects were worse then the headache
she managed to go back and get her ged and then went to college where she excelled and graduated with honors in criminal justice during this time she started workinf partime at petsmart and had no problems then about 2 yrs ago she started again developong stomach migraines and reactions to many things with headache and nausea she is now severly allergic to hamseters,guineapigs{which she had all her leife certain foods and we decided although her blood test came back un deternined to try a gluten free diet it hasnt helped evrything but her immune system is so compromised at this time that a cold turns into an asthmatic bronchitis but the last six monthe her reactions to normal things seem to be helping im not saying that this is the answer because we always tried to eat a well balanced diet very little fast food and she continues ti be positive she is working and despite headached and nausea at times she has supplemented smoothys with soy to help her digestion if anyone has any other sugestions it would be appreciated.thank you
Dr Rodney Ford said on August 5, 2010
Excellent. Accurate. Informative. I am a pediatric allergist. You have outlined exactly what I do. Yes, the baking is the thing to do to reduce the allergenicity of foods, including milk and eggs (is not so effective for nuts). “Test – don’t guess” is my motto. #DrRodneyFord
Ruth LovettSmith said on August 5, 2010
Thank you Maxima and Dr Ford for stopping by and for your comments.
Lynn – I’m so sorry to hear about what you and your daughter have been through. Unfortunately, sometimes there are no 100% easy and definite answers and it might take several specialists to get to the bottom or your daughters issues. Some of us never get to the bottom of it at all.
I don’t have any suggestions for you, but hopefully some of our readers can weigh in on what’s helped them with their more severe dietary and allergic issues. It’s possible your daughter would need to see someone more specialized in immune systems and gastric issues.