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+biopsy/-labwork

rma94

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rma94 Newbie
rma94
Posted

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
samcarter
Posted
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
nikki-uk
Posted

...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
bear6954
Posted

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
MaryJones2
Posted

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
ang1e0251
Posted

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
rma94
Posted
  • Author
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
rma94
Posted
  • Author
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
ang1e0251
Posted

Many of us can relate to that frustration.

caek-is-a-lie Explorer
caek-is-a-lie
Posted

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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