Why Is Wheat Doing This To Me If I Do Not Have Celiac And Am Not Allergic To It?

[livelaughlove3885]

Hi All! I think I accidentally got glutened last night. I can't order out from anywhere (and should have learned my lesson by now... but when you work all day, come home and are starving... and didn't have time to food shop and prepare ahead because busy with children... sometimes you just think I need to eat... i'll take my chances). So i ordered fries from a pizza shop. I very well knew they probably had cross contamination. Well, I haven't had any gluten/wheat since about 2 weeks ago and my rash went completely away. Also, I haven't used any meds or creams because i wanted to see if it was wheat that was causing it. The creams were not working, so i stopped using them the same day i stopped eating wheat. I stopped eating wheat and the rash went away. Anyway, about an hour after i ate the fries i got so itchy. I went upstairs and looked in the mirror and hot red blotches on my face and other parts of my body. They were not raised hives or anything, just these red spots that felt hot, not hot to the touch, but to me under the skin they felt like they were burning. This morning i just woke up and I am fine. This is very frustrating for me because I do not have celiac disease, yet my small bowel ( intraepithelial lymphocytosis/mild crypt hyperplasia) was Marsh 2 and looked like celiac so they tested bloodwork and i am negative DQ2 and DQ8. Also, i never had a skin biopsy... the dermatologist just looked at me and said folliculitis (it was on my face, chest, upper back, top of shoulders. It did not look infected, just like these raised circular bumps with white fluid in them or something. They didn't bother me, i had them for about 6 months, until the end of the 6 month period they started to get itchy.). Also, I had allergy testing, and I am negative IgE for wheat. But when i remove wheat, all my problems go away. I am convinced that it is not the gluten but some other protein in wheat that gives me problems. Anyone else out there like me? Why does wheat cause inflammatory reactions (but that are not allergy or autoimmune related) in people like me? It really sucks because you can't test for it. All you can do is do an elimination diet to figure out what ails you. And no one believes you.

[GFinDC]

Hi,

 

You may have DH (dermatitis herpetiformis) starting.  DH is diagnosed by taking a small biopsy sample of skin next to (but not in) the lesion.  They check it for antibodies.  People with DH seem to have some problems being diagnosed at times.  They don't always show the same blood antibodies as other celiacs for some reason.  There is more info in the DH section of the forum.  If you are diagnosed with DH then you have celiac disease, but some dermatologists are not familiar with the disease and testing for it.

 

There is also NCGI, which has similar symptoms to celiac disease but no tests will detect it right now.  It sounds more like DH to me tho.

 

Non-celiac wheat sensitivity article
https://www.celiac.com/articles/23033/1/Non-Celiac-Wheat-Sensitivity-It-Exists/Page1.html

Innate immune response in AI diseases
https://www.celiac.com/articles/23149/1/Gliadin-Triggers-Innate-Immune-Reaction-in-Celiac-and-Non-celiac-Individuals/Page1.html

 

 

[squirmingitch]

It doesn't sound like dh. However, I won't say it isn't pre dh. DH is insanely itchy --- absolutely drive you nuts, make you want to peel your skin off with a knife, insanely itchy 24/7. And dh doesn't present & then the next morning you are fine. What's happening to you doesn't add up as dh; at least not at this point in time. What is pre dh & could it be that? Quite frankly I can't say. There are no med texts or studies that I have found on the subject of pre dh.

GFinDC is right though. Ppl with dh test false neg. on the celiac blood panel 60% of the time. Also, DQ2 & DQ8 are not the only celiac genes as some studies have shown. They are by far, the most common but there are studies out there that have identified other genes, mostly ppl in other countries, or from other ethnic backgrounds.

One thing is certain though --- you have a problem with gluten. We have a saying:

If it makes you sick, don't eat it. 

 

I wish I had better answers for you livelaughlove but I don't. And I wouldn't be so quick to think the problem lies with some other protein in wheat. Tests can be mixed up, screwed up, performed incorrectly, ordered incompletely, interpreted incorrectly, & are not reliable 100% of the time. You are having a reaction to wheat ---- period. Your body is verifying that & that counts more than all the tests in the world.