Comments on: Is a Biopsy Necessary for Celiac Diagnosis?

By: Kathy G

Kathy G — Wed, 23 Mar 2022 13:09:27 +0000

Yesterday morning was my first little bite of bread a little bigger than a postage stamp and at bedtime I’m hit with cramping the likes I’ve never known. No idea what to take, didn’t have any ginger tea I read helps and thinking no way I can do this for a month???!!! Then I took Pepto bismal out of sheer agony not caring what happened but it did help calm the cramping and I slept some. My gastroenterologist is putting me on dicyclomine I suspect out of concern I’ll back out of this month long ingestion of gluten for the biopsy and she’s right to think that! No idea how I’ll tolerate the dicyclomine but what choice do I have if I want a clear diagnosis and discovery of other possible issues? Out today to stock up on ginger tea hoping it’s helpful enough that I won’t need the Rx everytime.

By: Margaret Clegg

Margaret Clegg — Wed, 23 Mar 2022 12:45:12 +0000

In reply to Kathy G. I am SO osrry that your primary doctor didn' send you to a gastroentereologist immediately. I feel bad for those who are wrongly told to start a gluten free diet prior to being tested. Having a biopsy no only allows for accurate testing, but also allows the gastro to check for any other intestional damage, such as from a hiatal hernia, etc. Prayers that this montb will go by quickly.

By: Kathy G

Kathy G — Wed, 23 Mar 2022 02:10:01 +0000

My Dr ordered a gluten test on me six weeks ago and my antibodies were off the chart high for gluten sensitivity. He tells his staff to tell me to go on a gluten free diet. That’s it. When I asked more questions he brushed me off with “it’s complicated and confusing. I sadly listened to him out of fear and his avoiding discussion and got off gluten six weeks ago. The results 3 days after eliminating gluten were amazing, my energy rebounded, stomach pain and inflammation gone, joint and back pain gone. I haven’t reacted to any other foods. But I went to a gastroenterologist a few days ago and he wants to do a biopsy which requires me to add gluten back. (Yes I hate my regular Dr now!). I had my first bite of wheat bread this morning. Tonight I have pain in my abdomen that’s a nasty reminder of how bad it was before I eliminated gluten! I have to do this for a month for an accurate biopsy? Not sure I can or want to!! This is crazy and cruel and I’m not seeing how I can handle this pain and knowing god knows what is happening to my gut!

By: Donna T

Donna T — Mon, 19 Apr 2021 13:46:24 +0000

I was diagnosed on blood test only. The biopsy seemed unnecessary since I responded so well to the diet. My sister was also diagnosed without a biopsy so we feel pretty sure we have it without a biopsy. My son tested negative twice on blood test but responded to the diet. He doesn’t care and calls himself celiac and adheres to GF. He would have to suffer eating gluten to have flat villi for what reason? My sisters daughter had biopsy only which did not show flat villi so she refuses to accept a blood test because she doesn’t want celiac disease that would limit her social life. She is constantly sick and calls it IBS. There is a real mix of opinion out there.

By: Lindsay Barnes

Lindsay Barnes — Thu, 27 Feb 2020 14:13:22 +0000

I was diagnosised via blood test only. I had initially been diagnosised with Hashimotos Hypothyrodism. After a few years of up and down on my medication my doctor decided to test me for Celiac. I have been living a gluten free life since my diagnosis. I take it very serious and have had some people close to me make comments that amaze me ..like you won’t die if you eat it.

By: Margaret Clegg

Margaret Clegg — Sun, 14 Jul 2019 14:11:58 +0000

In reply to Rochelle Thompson. Hope you can find a doctor who can treat you better!

By: Rochelle Thompson

Rochelle Thompson — Sun, 14 Jul 2019 13:05:12 +0000

My doctor diagnosed me with celiac with blood work where ONLY Amy deamidated gluaden IgA was high, not TTG or any other markers. He told me to stop gluten immediately. It wasn’t until after that, I researched and found I need a biopsy. (He did and endoscopy a year ago and didn’t do a biopsy. ) I want an official true diagnosis. I’m willing to do gluten challenge because my symptoms aren’t terrible and are just random not all the time. (I get gas and bloating and stomach noises-all occasionally but not every day or every time I eat gluten. So I’m willing to do it. He won’t do a biopsy because it’s “not necessary “.
I am looking for a new gastrointestinal doc!

By: Erich

Erich — Wed, 24 Jan 2018 13:16:21 +0000

I agree biopsy is important, but I also doubt if the trouble of going through a gluten challenge is worth the risk if the patient has already stopped eating gluten after a positive blood test. Yes, patients should be advised to continue eating gluten and get a biopsy, but I can say personally this doesn’t always happen.

Medical staff may mistakenly tell a patient to stop eating gluten prior to a biopsy, which is what happened in my young daughter’s case. Since then, we have observed a strict gluten free diet. TTG levels returned to normal, her anemia resolved, she gained weight and height, her belly returned to a normal size, and she’s much happier with her gut.

The couple times she has accidentally ingested gluten, it has been hours of vomiting followed by diarrhea. Nobody in their right mind would go through a month of that to do a confirmative biopsy.

The serum Celiac tests available are very accurate and have very few false positives, especially when coupled with a symptomatic patient. I also asked if there are ever false negatives for biopsy, and our GI doc said absolutely. When I asked what the recommendation would be if my daughter’s biopsy came back negative for celiac, but she continued to have symptoms, he said it would be a strict gluten free diet. So, positive or negative biopsy result, the recommendation and prescribed diet was the same after a positive blood test.