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dfish

Trying To Make Sense Of It All

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I am needing some help figuring out all of my test results and am hoping that someone can help. Here is what has been determined so far:

Antiendomysial antibodies: negative

IgG: positive

IgA: negative

Enterlab: Slightly positive to gluten, no intestinal damage, no celiac gene (other "gluten sensitive markers")

IgE skin prick tests: positive for allergy to wheat

So, it's obvious that wheat is a problem for me, and that is fine, but I'm wondering if "gluten" is a problem for me. From what I've read, even on this site itself in the research articles area, antiendomysial antibodies are very conclusive for celiac disease, so since mine were negative, I don't have celiac disease. The articles also say that the positive IgG could be something else too because it is a less specific test. Everything I have read on the web about the gene testing says that it is "impossible" for someone without the gene to develop full blown celiac disease even with sensitivity. So, I understand that I am allergic to wheat and need to avoid it, but I guess I am wondering if I have to avoid "gluten" the same as I would avoid wheat. Due to a tremendous amount of other food allergies I have discovered, it would be nice if I could eat simply "wheat free" instead of gluten free. Help?

Thanks!

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If your alregitc to wheat, most things that are not gluten free will likly have wheat in it of some kind. So I would say yes, you prbly should stick with gluten free.

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Everything I have read on the web about the gene testing says that it is "impossible" for someone without the gene to develop full blown celiac disease even with sensitivity.  So, I understand that I am allergic to wheat and need to avoid it, but I guess I am wondering if I have to avoid "gluten" the same as I would avoid wheat.  Due to a tremendous amount of other food allergies I have discovered, it would be nice if I could eat simply "wheat free" instead of gluten free.  Help?

<{POST_SNAPBACK}>

Here's the thing about "can't get celiac without the gene" - they haven't identified all the genes. As I recall, studies suggest about 2% of biopsy-confirmed cases of celiac occur in people who do not have any of the known celiac-inducing genes. So, it's likely true that you can't get celiac without any of the genes that cause it, but not all the genes that cause it are known, so you can't actually know if you absolutely don't have any of the genes that cause it. (Well, to be more accurate, I should be saying alleles or genes - there are multiple alleles of the same gene that appear to cause the problem.)

That aside, I had similar test results - inconclusive. I think in a situation like that, yoiu have a couple options - you can eat enough gluten for three months and get a biopsy, you can listen to how your body responds to items in a dietary challenge, and you can just go with the wheat allergy. Given the insidious nature of the symptoms, I think it's worth to do the dietary challenge. By that, I mean that you eat gluten free for at least two weeks. See if you notice any change. Then, regardless of whether you see *any* change or not, you eat gluten (not wheat in this case, of course, but either pure rye bread or some barley - don't do oats for the first test) for at least a day or two. See if you notice any change. Then repeat, this time, checking oats. (I suggest them separately due to contamination issues and that some celiacs seem to tolerate pure oats.)

Of coure, doing that means you have to be confident of understanding your own body, and willing to go with what you see. But it is a valid test, assuming you reasonably control your intake those weeks. (Ideally, you'd make what you eat while having gluten identical to what you had the week before without it, just with gluten containing ingredients in place of items made to be gluten-free substitutions, so that you're not introducing something terribly different that you react to independently of gluten.)

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It would be helpful if you could have an allergy test for barley, rye and oats as well. I agree that while wheat free is probably what you need, you will likely find that means pretty much gluten free because of the mixed grains in so many things. Most breads, for instance, even rye and stuff, also have regular wheat flour in them.

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