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The Gene & Full-blown Celiac


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#1 celiac3270

 
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Posted 15 August 2004 - 12:18 PM

I have celiac disease. Nobody else in my family does according to tests, although my mom, grandmother, and brother all have problems that would make you think they had it.

Grandmother -- EXTREMELY SEVERE osteoporosis
Mother -- Bloating, distended stomach after eating gluten
Brother -- Low weight (exact size/weight I was at his age...very thin).

The doc. thought it was likely that my brother had it and this question is concerning him. The GI tested him about 6 months ago, as soon as I was diagnosed, and then tested a month later in disbelief at negative bloodwork. He has the gene, I think, but not celiac disease.........I don't really know too much about this; does this make sense? Having the gene, I think, means that he could develop celiac disease at any time due to a number of factors that include high stress......I don't remember the others. If he has the gene, but not celiac disease, does he need to be on a gluten-free diet? We're gonna ask my new celiac doctor about this after we get my symptoms under control, but I was interested to hear what people here thought. Will he need to get tested many times in the future to make sure that it hasn't developed into celiac disease? I know that there is always the possiblity of inaccuracy on the bloodwork, but I was just wondering about this gene thing. Thanks.

-celiac3270
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#2 GEF

 
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Posted 15 August 2004 - 02:59 PM

Hey celiac3270!

I was just reading something regarding this subject in the book, Dangerous Grains... good book, by the way. The author mentioned the need for repeat testing, as celiac can develop at any time. My symptoms started about 5 years ago, at a time of great stress but, seriously that's when it happend for me and I'm now 28.... nothing was unusual prior to that. It seems that more and more tests turn positive the longer I wait. I wish I could convice my family, esp my sister to get tested... so, I think it's great that your family is being pro-active. I'll see if I can find out where the author writes about this and give you some info. He really does stress genetic-predisposition and the need for anyone who has tested positive at all to go gluten-free... at least to see if their symptoms improve.

Gretchen
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#3 Guest_~wAvE WeT sAnD~_*

 
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Posted 15 August 2004 - 07:43 PM

celiac3270--

At first I was going to say that your family members seem to be "carriers" of celiac disease--but obvious exhibition of the disease's most common symptoms leaves me as confused as you.

:ph34r: <---- I think the gene is hiding, just like this guy :P Has anyone else in your family had an endoscopy? If so, what were the results?
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#4 celiac3270

 
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Posted 16 August 2004 - 01:45 PM

Thanks for the info.....that's what I thought, Gretchen, but I hadn't read anything about it, so I didn't know for sure. Jill, nobody in my family has had a biopsy. My dad tested negative in the bloodwork, which makes a lot of sense. Neither he, nor anyone else on his side of the family show any signs of celiac disease. My grandma has bloodwork done--negative. Mother had bloodwork--negative. Brother had bloodwork--twice--negative. Nobody has had a biopsy....and I know that there are relatively common cases of neg. bloodwork, pos. biopsy.........so he probably should've had a scope since we had such suspicions about him. Once we get my symptoms under control, we'll talk to the doctor about my brother......he seems to be really on top of things and knowledgable, so he'll probably know what to do about all this.
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