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Get Biopsy?...please Help With Suggestions

pieguyblue

By pieguyblue
in Coping with Celiac Disease

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pieguyblue Newbie
pieguyblue
Posted

Hi all, Just moved to Oregon from Ann Arbor, Michigan. Before I moved, my last call before my phone was disconnected was from my MD stating my blood tests showed Celiac Sprue as the reason for my varied health probs. He said get hooked up with a GI specialist in Oregon ASAP.

Well, I've moved the remote Oregon southern coast...lovely here, but no medical centers. Had to drive 3 hours to see a specialist who was (not to mention rude/dismissive) skeptical about my diagnosis. Said I should get an endoscopy/biopsy, but wasn't clear on whether I should resume a "gluten-full" diet to get a proper reading.

I know I should switch to someone more receptive and knowledable, but options are not many here. Any advice? Should I go back to gluten-free diet to get a proper reading? And is a biopsy the way to go in the first place?

I have felt better since doing a gluten free diet for 2 months. I do still have symptoms, but instead of 7 days a week of pain and non-glory, I have only 2 days on average. This specialist seemed to think it was proof I was not a celiac. Please advise. <_<

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nettiebeads Apprentice
nettiebeads
Posted
Hi all, Just moved to Oregon from Ann Arbor, Michigan. Before I moved, my last call before my phone was disconnected was from my MD stating my blood tests showed Celiac Sprue as the reason for my varied health probs. He said get hooked up with a GI specialist in Oregon ASAP.

Well, I've moved the remote Oregon southern coast...lovely here, but no medical centers. Had to drive 3 hours to see a specialist who was (not to mention rude/dismissive) skeptical about my diagnosis. Said I should get an endoscopy/biopsy, but wasn't clear on whether I should resume a "gluten-full" diet to get a proper reading.

I know I should switch to someone more receptive and knowledable, but options are not many here. Any advice? Should I go back to gluten-free diet to get a proper reading? And is a biopsy the way to go in the first place?

I have felt better since doing a gluten free diet for 2 months. I do still have symptoms, but instead of 7 days a week of pain and non-glory, I have only 2 days on average. This specialist seemed to think it was proof I was not a celiac. Please advise. <_<

I think your "specialist" is specializing in B.S. The bloodwork said celiac. There you go. The biopsy is NOT the gold standard it was thought to be. The samples could be taken from areas not damaged, slight damage could occur where it is misread as normal...You have had a positive test for celiac disease. Two in fact - the diet challenge. The fact that you are feeling better w/o the symptoms every day would be proof enough for me. BTW, the diet challenge is how my dr dx'd me 9 yrs ago. The 2 days avg/week of symptoms could be from a variety of things. I don't know how long you had symptoms, but the longer you were un/misdiagnosed with celiac disease, the more damage was done to your system and therefore more time to heal completely. And you could be getting hidden gluten or be victim to cross-contamination which would cause the symptoms. Your body is telling you it likes the gluten-free diet much better than a gluten diet. Listen to it.

Annette

KaitiUSA Enthusiast
KaitiUSA
Posted

Your blood tests showed it ..you have it. A biopsy can only rule celiac in it can't rule celiac out so the only reason to even get one is to maybe see the extent of damage done.

If you go back on it for testing you need to be on it for 3 months prior....I personally do not think it is worth it....

Have you also changed products like shampoos, hairsprays, makeup, etc?

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      Disaccharide deficient, confusing biopsy results, no blood test

      By jenniber · Posted

      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
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