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The Gene & Full-blown Celiac
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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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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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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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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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    • Just found this site today. Did you ever find one? I was diagnosed this year and I live on Oahu.
    • I was diagnosed this year and I live on Oahu. I have yet to meet another celiac, so that tells you something about our limitations here. I work in Waikiki and do frequent Rouffage. It is nothing fancy, small place, but keeps me fed when I need something. I also like Greens and Vines. It is a vegan restaurant and worth every penny. Greens and vines sets up at the KCC farmers market on Saturdays too. Places in Waikiki that do offer a gluten-free menu include, PF Changs, Dennys, Big City Diner and California Pizza kitchen. I do not trust those places due to the risk, but they "offer" gluten-free options. I did try and order a beer at Yard House in Waikiki. They label clearly states that it contained wheat, so yeah sent that back with the waiter. I have also tied Doraku in Waikiki. I called ahead and spoke with management. That went well and they offer gluten free soy sauce. There is a deli at Down to Earth Grocery store in Honolulu that has gluten-free options, but the whole foods here do not offer hot food that is gluten free. They do have a hot food bar, but you have to stick to the whole plain salad and veggie options. It's good to hear the hotels here are getting better, beyond Waikiki hotels there is no one really interested in being gluten free.
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