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Must I Have The Biopsy?
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Hi There! I am new to the world of gluten intolerence and to message boards. I am 35yo and have just had the gluten intolerence blood work. My results were psoitive for gluten intolerence and I have been gluten-free for two weeks. I feel so much better. I could go on and on about that but I'd be preaching to the choir! I am wondering if I really must have the biopsy? My PCP who did the blood work has not even mentioned it. She simply told me to avoid gluten. I have to say I have had symptoms for as long as I can remember. I have had an IBS diagnosis since I was a teen. I was diagnosed with Hypothyroid this year. I bring that up because I was suprised to learn there is a relationship between thyroid idease and Celiac. Anyhow, I really don't want to have the biopsy. I had a colonoscopy 6 years ago and don't want to do anything like that agian unless I really, really have to. Any suggestions?

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Wow, your situation sounds exactly like mine two moths ago except for the thyroid and the fact that your PCP hasn't mentioned the biopsy yet.

The first thing my doc mentioned was the biopsy. I beat him to the punch by going gluten-free for the weeks prior to my next visit. Like you, I will avoid invasive procedures at almost any cost. The way I figure, if not eating gluten makes me feel better, then who really gives a fig what the biopsy says? The biopsy is, literally, the "gold standard," and that is even the term my doctor used while trying to persuade me to get it done, but the fact is that it is not definitive, and as with all procedures there is always some risk associated with it. For one thing, if you want to have the biopsy done then you will need to eat gluten for several weeks prior to the procedure. I already know that you won't want to do that since you are feeling so much better. What I decided to do was to continue the diet to see whether I continued to improve or not- I'm not 100% better yet you see, but I am getting better every week so far. I have a follow up visit in a few months to see how I am progressing. This wasn't my doctor's first choice, but it isn't my doctor who is suffering. Remember that it is YOUR body and only YOU can decide whether to have any procedure done. I think the biopsy is going to need some serious re-examinations in the near future because it seems to me that it is something of a dinosaur. I feel that we should be able to do without it in most cases.

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Hi Catfish! Thank you for the reply. You helped validate my thoughts and feelings about the biopsy. I do not want to add gluten back in my diet just to have an uncomfortable medical procedure. I was not even aware of that part of it! We do sound very similar. Especiallly regarding the biopsy issue! I hope you continue to feel better.

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I opted to go only on inconclusive test results followed by a dietary challenge, and don't plan on getting a biopsy.

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Dietary improvements are a test in itself, also bcause you hve beeen gluten-free you would have to go back on gluten before you have tohe biopsy which is probably something you never want to to again, it is your body and you make the ddecesions whatever you feel is right is what you should do.

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I have three sons that tested positive. I opted not to do the biopsy for them since they tested positive for the endomysial antibody which is 98% accurate for celiac. I didn't want them to have to wait to feel better or go through the risks associated with biopsy.

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    • Hi Nobody, Welcome to the forum!  I noticed you said you have been avoiding wheat products.  That's good, but are you avoiding rye and barley also?  Wheat, rye, and barley are the 3 grains that cause reactions in celiac patients.  About 10% also react to oats. If you haven't had the full celiac antibodies test panel, it might be worthwhile getting that done now.  The ttg is just a basic test and is generally followed up by an endoscopy or the full celiac panel. I wouldn't worry a lot about getting cancer.  That doesn't happen often. It is possible some of the other grains you might be eating are contaminated.  A group did a test on several off the shelf products a few years ago that would not normally be thought of as having gluten and found some actually did have low levels of gluten.  Things like corn meal for example.    
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