Question: Food Allergy/Intolerance/Sensitivity? Help!

[kellyreiland]

Hello!

A few months ago, I had a severe anaphylactic reaction after running, and it was my first fun in a month or two. My symptoms included severe eye swelling (angioedema?), breathing became labored, nasal passages became blocked. I've been trying to figure out exactly what cause the reaction since. I went to an allergist who simply said the reaction was idiopathic. Possible causes included wheat, chickpeas, ibuprofen. I tested negative to basic skin prick tests with wheat and chickpeas. I regularly run while taking ibuprofen, so I don't think that's the cause. I do now have to carry around an epipen and a dose or two of benadryl and prednisone.

I didn't like the idea of waiting until my next allergic reaction to find out more about my potential allergy, so I went to a different doctor who recommended a bunch of tests. Everything looked fine except my immune system was still all riled up, months later, and I still had extremely high levels of inflammation in my body. My doc said my immune system was hypersensitive and I need to reduce its sensitivity. The initial testing doesn't look like I have any type of autoimmune disease. I have basic symptoms of fatigue, unnaturally reactive skin, weight gain, but all of that could be attributed to other things. I got an E95 basic food panel, and I'm "allergic" to all types of dairy, gluten, and wheat (results over 2300 for all). I know this means I have significantly high levels of IgG antibodies in my system, but I've heard there are a lot of false positive tests. Because my immune system is involved, my doc believe it to be a non-IgE allergy and not a food intolerance. She says I have trouble digesting larger protein molecules. I've been eating these foods my entire life, so I haven't noticed any symptom changes.

My doc recommended I remove gluten from my diet and limit dairy. I don't have too much of a problem with this, but I'm looking to understand exactly what's wrong, both in terms of my anaphylactic reaction and the overactive immune system/sensitivity. I'm trying to understand whether this is more of an allergy problem, an autoimmune problem, or what the heck is going on. So many words have been thrown around recently by multiple doctors... allergies, intolerances, hypersensitivities, autoimmune problems, etc... Any ideas as to what's going on? I probably left something out, so please ask for details.

[CMdeux]

If you had an anaphylactic reaction-- and it certainly sounds as though you did-- then forget anything that the second doctor told you. 

Well, except this part--

Everything looked fine except my immune system was still all riled up, months later, and I still had extremely high levels of inflammation in my body

IgG allergy testing is pure hocus pocus.  Sorry, but that won't help you to avoid anaphylaxis.  It doesn't sound to me as though it was entirely "idiopathic" but more likely what is known as "exercise-induced."

Ibuprofen is not exactly unknown as a provoking agent, there-- particularly among people who are asthmatic of have asthma in their families.  Do you?

There are known interactions between strenuous activity and allergen exposure acting synergistically to produce systemic reactions which are VERY much more severe than they otherwise would be.   It is possible that wheat + activity = allergic reaction, that chickpeas did it only when combined with your run-- or that ibuprofen + activity does.  Generally, the interval between the consumption of the food and the triggering of the severe reaction needs to be less than 3 or 4 hours, though.  I hope that provides you with some ideas.  You mention wheat and chickpeas-- what exactly DID you eat within 3-4 hours of the reaction, and why were you taking ibuprofen, if you don't mind saying?

Do you have an epinephrine autoinjector??  If you don't, please go back to doctor #1 and ask for one.  Become familiar with the signs of severe allergic reactions so that you know when you should use epinephrine. 


I'm really glad that you found us, Kelly! 

[kellyreiland]

I do carry around an epipen now (thanks for reminding me to add that to the first post) and actually I own three! I had a Noodles & Co. entree dish called that is pretty much buttered noodles with a little bit of seasoning within that time span. I believe I took the ibuprofen for a headache around 5 hours prior to the run. Wheat isn't an uncommon food for me so I was surprised that, if this is the cause, it was my first reaction. About 9 hours before the run I'd tried an Indian cracker with chickpeas as the main ingredient, and that was the first time I'd ever tried chickpeas.

Do you think my overactive immune system is caused by something else at this point in time? Anything I can do to reduce the inflammation in my body?

[CMdeux]

Anaphylaxis leaves your immune system a bit "twitchy" for a period of time afterwards.  It's not necessarily as simple as "inflammation."  It's a matter of an immune system which is primed to see ANY foreign substance as a threat.



So were you ever RAST tested (a blood test that measures the level of IgE in your blood-- toward specific allergens)?

If you don't mind saying-- can you explain the process of being skin tested?  There are a number of reasons why a skin test might be unresponsive:

a) having taken antihistamines within the previous several days
b) a low-histamine response on a particular day (that is, your body may just not be responding to HISTAMINE normally, and in turn, wouldn't respond much to an allergen that elicits a histamine release, either)
c) serum for allergens which is no longer fresh/potent enough to elicit a good response.

For a skin test to be valid, you have to have two things:  a) a positive HISTAMINE control that forms a wheal, and b) a NEGATIVE saline control (a prick with saline that doesn't form a wheal).

[kellyreiland]

I don't think I've ever been RAST tested. My allergist used a histamine to elicit a response by poking it under my skin, and did the same with the wheat and chickpea allergens. The histamine obviously showed but the other two did not.

[twinturbo]

You may want to avoid wheat and celery a few hours before exercising. Combo'd with exercise they can cause a reaction. I know, weird. Get a good food allergist, a real one, and they'd know what you're talking about. E95 is rubbish. You need IgE tests but even then it's the combination with exercise.

I would keep my exercise closer to home or public access, I carry an iPhone instead of other music player so I can dial out if necessary. I also carry an epinephrine injector called an Auvi-q when I run because it's flat along with four 12.5 mg diphenhydramine melt tabs.

[Macabre]

FWIW exercise can also exacerbate an extant reaction.

But when I read your post I thought "exercise induced anaphylaxis" before I got very far.  The first doctor may not have thought of that since he/she isn't an allergist, but it would be one of the first things a real allergist would think of. Like they said, ditch the second "doctor," and go to a board certified allergist--and preferably one who specializes in food allergies.

Glad you have epinephrine!

[twinturbo]

kelly, one thought... do you have an developed protocol for when to inject, call rescue squad and be observed for a rebound (biphasic) reaction? how to inject? where? positioning?

[lakeswimr2]

You got some good advice already.  It could be just plain old exercise induced ana and not tied to food at all.  There are people who react to quick body temp changes (some to hot and some to cold) so it could be that after you running for a few months your body heated up more quickly than it has in the past and that was enough to cause ana.  It could also be tied to some food such as wheat + exercise.

Ditto everything CM said, esp about allergist number 2.  IgG testing is not valid or useful.  Glad you have epi pens.