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WinterSong

I Think My Sister Has A Gluten Sensitivity

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I was recently diagnosed with Celiac via blood test. My mom, sister, grandmother, grandfather and I all believed we had IBS until now, so they're all getting tested. My sister's blood tests results came back and they were negative. But part of me is so sure she has at least some sort of sensitivity to gluten. We both get sick from everything (why? because wheat is in everything!), and her symptoms match. She doesn't know which test the doctor ran - all she knows was he called to tell her she's not Celiac positive. Could it be a false negative? I know she hasn't been eating much due to her work schedule (and she barely ate anything the day she got blood drawn) - could that have effected it? I wish he would have told her if her test showed if she has a sensitivity, or slightly raised antibody count, even if they weren't high enough to be marked as Celiac.

She also has sensory integration disorder, which is a form of autism. I've read that Celiac/gluten sensitivity and disorders on the autism spectrum can sometimes be linked and that a gluten-free diet can help lessen some of the symptoms of autism. There is a "urine peptide test" that shows if the body isn't properly breaking down proteins like gluten and could help determine if a person with autism could benefit from a gluten free, casein free diet. I suggest that she ask her doctor about getting that done.

I also read on this forum that a lot of people test negative but still can't handle gluten and feel much better once they go on a gluten-free diet.

What do you all think of our situation?

And could I be the only one with true Celiac in my family, despite all of us sharing the same symptoms? Is anyone else's family like this?

I'm tending to think that she should try the diet....it's just a matter of convincing a pastry chef to give up baked goods. :huh:

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I tested NEG on blood testing. MANY people test NEG. I believe the estimate now is that people test FALSELY NEG nearly 40% of the time? Those are pretty bad odds.

I believed those test results (and a few arrogant, ill-informed doctors) and deteriorated further....I was deathly ill. It wasn't until I went back to my PC doctor who said "tests are NEG too often! This is what you have and you are right in going totally gluten-free for life". His children are celiac and he has read enough to know. I am making progress every month I remain gluten-free.

It is hereditary, so yes, it is quite possible she and your other relatives may develop celiac as well. As best, she is GI, so why not go gluten-free and see how she feels? Just know that she would have to go back on gluten should she want to have a biopsy to confirm. (I refused. No way I am going backwards!!!)

I can't get the rest of my autoimmune disease-filled family to listen to my pleas; maybe your Sis will give it go!

Hope you all feel better asap!

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A pastry chef would be continuously exposed to gluten in the air landing in the nose and mouth from breathing and ending up in her stomach. That is the worst profession for a Celiac. Oh my! I know you know that by your post, but I was just considering that situation for a moment and felt overwhelmed by the CC issues before her.

Yes, there are false negatives all too often. And some think that there is a spectrum of illness and damage that is cumulative ranging from Gluten Intolerance to Celiac the longer one ingests gluten.

Hopefully she will listen to you and watch your progress on the gluten free diet.

Maybe if any of the other relatives with IBS test negative but then do get better on the gluten free diet, she will want to try it for her health.

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