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Missed Diagnosis,conflicting Diagnosis

lexusca

By lexusca
in Coping with Celiac Disease

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lexusca Rookie
lexusca
Posted

Has anyone ever been given a conflicting diagnosis. How frustrating,seen the specialist last tuesday and I get the you have celiac, but you might not...but chances are you do. Biopsy was positve for celliac but blood work did not. Now I have been told to eat gluten and have another scope,catscan and bloodwork every week. Anyone else have this problem. I am so ready to lose it :o

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zus888 Contributor
zus888
Posted

Has anyone ever been given a conflicting diagnosis. How frustrating,seen the specialist last tuesday and I get the you have celiac, but you might not...but chances are you do. Biopsy was positve for celliac but blood work did not. Now I have been told to eat gluten and have another scope,catscan and bloodwork every week. Anyone else have this problem. I am so ready to lose it :o

Yes, but my Gi doc had a the complete opposite recommendation. I also got a 2nd opinion with the same recommendation as my Gi doc, which was to go on a strict gluten-free diet and get re-scoped in about a year. That's really the only way to rule out or confirm celiac. (Villous blunting was found in endoscopic biopsy, but blood tests were mostly negative - I had one weak positive Gliadin IgG).

mamaw Community Regular
mamaw
Posted

Sounds like another mainstream doctor who knows nothing about celiac or gluten sensitivity... there are tons of these . type doctors running loose & getting paid big bucks.......sorry ....I would not subject myself to scopes even monthly...I would either go gluten-free on my own or else find a doctor who knows about celiac...

If you let us know where you are from maybe someone will give you a name of a doctor who understands celiac.

Hope you find answers soon

blessings

mamaw

sa1937 Community Regular
sa1937
Posted

Has anyone ever been given a conflicting diagnosis. How frustrating,seen the specialist last tuesday and I get the you have celiac, but you might not...but chances are you do. Biopsy was positve for celliac but blood work did not. Now I have been told to eat gluten and have another scope,catscan and bloodwork every week. Anyone else have this problem. I am so ready to lose it :o

Huh? I am also very confused by your post.

You mean you already got the biopsy results? It usually takes a week or so. IF the biopsy was positive, it would trump the negative blood work and you have celiac. False negatives are not uncommon on the celiac blood panel. Did you get copies of the celiac panel (hopefully your dr. requested the complete panel or the new DGP test) as well as a copy of the biopsy results? If not, get copies and post results here when you do...there are some knowledgeable people here who can help you interpret them.

I'm more than confused by a repeat scope, cat scan and bloodwork. ??? If your biopsy was positive, why would your dr. want you to go back to eating gluten?

txplowgirl Enthusiast
txplowgirl
Posted

Positive biopsy is the Gold standard diagnosis. You are Celiac and the dr is an idiot.

zus888 Contributor
zus888
Posted

Actually, villous blunting and the other biopsy results that are representative of celiac aren't NECESSARILY due to celiac. The physiological changes to the small intestine could also be due to soy or milk intolerance, Crohns, intestinal carcinoma, lymphoma, and some others that I cannot remember. Yes, the chances of it being celiac is much greater than the other issues, but you'd have to do more testing to really be sure. The "testing" my doc has suggested is doing a strict gluten-free diet for a year, do another scope, and if my intestines are healthy, then we have our answer. If not, then we'll need to look further into the other possible causes.

I have talked to him about this because they found inflamed abdominal lymph nodes during an ultrasound in monitoring another disease I have. To me, I feel the chances of my biopsies being the result of something more sinister (like lymphoma) are higher because we have what could be another symptom or sign that points to that. I didn't want him to jump to conclusions and diagnose celiac without as least considering the other possibilities because if it is something like cancer, then the earlier we find it and deal with it, the better chances I have. So, those possibilities are in the back of his mind (as with the doc who gave me the second opinion), but we are all hoping that it is celiac (and chances are that's exactly what it is). But only until we see improvement after going gluten-free will we know for sure.

Personally, I also find it VERY odd to get weekly blood tests for celiac, let alone the scope and CT scan.

ReferencePlease Newbie
ReferencePlease
Posted

Has anyone ever been given a conflicting diagnosis. How frustrating,seen the specialist last tuesday and I get the you have celiac, but you might not...but chances are you do. Biopsy was positve for celliac but blood work did not. Now I have been told to eat gluten and have another scope,catscan and bloodwork every week. Anyone else have this problem. I am so ready to lose it :o

If you feel better being off gluten, don't go near the stuff. I have opted to skip any more testing because making myself ill to get the proper label (celiac or wheat intolerant) is just not worth it.

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