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.
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.
For more information on food allergy testing, treatments, studies and more;
click on Food Allergy Information to visit our Food Allergy 101 page.