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Celiac Simplified?


pricklypear1971

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pricklypear1971 Community Regular

So, after reading and reading this is how I'm going to keep myself sane.

1) gluten intolerance exists and is widespread and underdiagnosed.

2) digestive intolerance is usually labeled celiac if there are visible proof (bloodwork, endoscopy).

3) any other gluten intolerance (proven by gluten withdrawal) is labeled "intolerance".

4) DH is usually called Celiac if proven by biopsy.

5) genetic testing can indicate a predisposition to varying types of gluten intolerance (including celiac).

The only reason I'm trying to "prove" the problem exists in me is to convince other family members to explore gluten-free, in hopes of relieving any suffering they are experiencing due to gluten. I don't wish this on anyone!


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pain*in*my*gut Apprentice

So, after reading and reading this is how I'm going to keep myself sane.

1) gluten intolerance exists and is widespread and underdiagnosed.

2) digestive intolerance is usually labeled celiac if there are visible proof (bloodwork, endoscopy).

3) any other gluten intolerance (proven by gluten withdrawal) is labeled "intolerance".

4) DH is usually called Celiac if proven by biopsy.

5) genetic testing can indicate a predisposition to varying types of gluten intolerance (including celiac).

The only reason I'm trying to "prove" the problem exists in me is to convince other family members to explore gluten-free, in hopes of relieving any suffering they are experiencing due to gluten. I don't wish this on anyone!

Yes! I have been trying to wrap my head around all of this stuff, too. I agree with #3, but it may be difficult to find a doctor who would acknowledge gluten intolerance without the usual proof. There is a huge information gap amongst doctors regarding non-celiac gluten intolerance. :angry:

I have decided that I don't need a doctor to tell me I have a problem with gluten (even though I have a little bit of "proof" with a positive blood test). At first I was so stressed out about a possible negative biopsy next week. But it doesn't matter if I have full blown celiac or just an intolerance, the end result is the same.....NO MORE GLUTEN FOR ME BECAUSE IT IS MAKING ME SICK! Luckily I don't need a doctors rx to go gluten free! :P

I told my brother last week that I have one of the genes for Celiac disease, and that he might want to be tested to see if he has the genes (he even has symptoms, but tested negative for Celiac antibodies 2 years ago). He completely blew me off, and said "If I had a disease that was destroying my intestines, I think I would be sick as hell". I ended it there.....some family will be receptive to testing and learning all about gluten intolerance, and some won't. Just do the best you can and get you fixed first! ;)

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    • trents
      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
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    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
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