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+biopsy/-labwork


rma94

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rma94 Newbie

My story starts in oct of 2008 when I started having panick attacks. To me they just started for no reason. I was also having abd pain and not able to each any significant amount of food without pain. I was admitted in November for dehydrations. The GI doctor did an egd which showed gastritis, esophageal stricture and

damaged villa with probable celiac disease according to the biopsy. I asked the gi doctor to do blood work and he ordered a I think a ttg-igm. After bugging his office for 2 weeks to get the results his nurse called and says the lab was negative and I didn't have celiac disease. I highly doubt she showed the doctor the results before telling me since I bugged her so much. Is this possible? Thanks


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samcarter Contributor
My story starts in oct of 2008 when I started having panick attacks. To me they just started for no reason. I was also having abd pain and not able to each any significant amount of food without pain. I was admitted in November for dehydrations. The GI doctor did an egd which showed gastritis, esophageal stricture and

damaged villa with probable celiac disease according to the biopsy. I asked the gi doctor to do blood work and he ordered a I think a ttg-igm. After bugging his office for 2 weeks to get the results his nurse called and says the lab was negative and I didn't have celiac disease. I highly doubt she showed the doctor the results before telling me since I bugged her so much. Is this possible? Thanks

It is entirely possible to have damaged villi and still have a blood test come back negative for celiac; that is why the biopsy is still considered the "gold standard" for a diagnosis. Up to 20 percent of celiacs can have negative EMA, for instance; they're called "seronegative" celiacs. My doctor would only do the EMA test, saying it was the most sensitive for celiac; when it came back negative, even with my symptoms and positive response to the gluten free diet, he said I didn't have celiac disease. :rolleyes:

nikki-uk Enthusiast

...another one to add a positive biopsy/negative blood story (my hubby).

It is entirely possible, but I would expect the doc to rule out all other possible causes of damaged villi first :)

bear6954 Apprentice

esophageal stricture is another name for eosinophilic esophagitis. EE is normally caused by an allergic reaction to something - food or environmental. My son was diagnosed with ee when he had is biopsy. Did your doctor recommend treatment for that? I believe my sons was caused by gluten and has gotten much better the longer he is gluten free.

MaryJones2 Enthusiast

I'd trust the biopsy over the bloodwork. There are quite a few reasons bloodwork can be negative. Just my opinion, but if your condition improved on the gluten-free diet and you have a positive biopsy then I'd assume it was celiac until proven otherwise. Good luck!

ang1e0251 Contributor

Damaged villi sounds like celiac disease to me. Ask for your own copy of the bloodwork and other tests. She could have read it wrong also.

rma94 Newbie
esophageal stricture is another name for eosinophilic esophagitis. EE is normally caused by an allergic reaction to something - food or environmental. My son was diagnosed with ee when he had is biopsy. Did your doctor recommend treatment for that? I believe my sons was caused by gluten and has gotten much better the longer he is gluten free.

Actually I didn't know about the stricture until I requested a copy of the procedure report.


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rma94 Newbie
Damaged villi sounds like celiac disease to me. Ask for your own copy of the bloodwork and other tests. She could have read it wrong also.

Thank you guys for the resonses. I am much improved since following the glutten free life. I guess I am just frustrated with the doctors and

lack of definate (sp?) responses from them.

ang1e0251 Contributor

Many of us can relate to that frustration.

caek-is-a-lie Explorer

Yeah, I'd get a copy of that report. Even doctors misread lab results. Mine sure did with my thyroid. "You're right in the middle of normal" was in actuality hypothyroidism! :(

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    • Mari
      Thanks, jmartes, for answering the question. You believe you still have active Celiac Disease. Right? You wrote that you are WHEAT free. Are you also BARLEY free and RYE free?I am asking this because to have an active reaction you must be putting gluten  into your body, There are a few other foods that may cause some autoantibody production. Ask KnittyKitty about this. In 2007 you had more food issues. Many Celiacs have this development and I think it is because while they hadthe active celiac disease and damage to their small intestine food allergies were caused because of the damage  while you had the active disease and not identified until years later. It is necessary to eliminate those foods from your diet. Scott Adams wrote that some people can start eating those foods after their intestine has healed. I have not been able to add any foods I react to back to my diet.      
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      NOOOOOO NO NOOOO I was 23 years old.i have Not eaten wheat sense diagnosed in 1994.Been reading labels ever sense and in 2007 found more food issues. Menopause has changed my body completely and asking for help has turned into a medical NIGHTMARE. Wondering why my skin and eyes are having issues. Is all on me learning because blood work fine.Yet again for some reason not acknowledging my digestive issues ive given copies of.As stated in pervious post I was given breath test which I was positive with that dr and prior to him a few months, still wanted me to do.
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    • Aretaeus Cappadocia
      Celiac is too common to be "rare" under the standard definition. Does this group do anything with Celiac?
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