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Getting a definite diagnosis

Eab12

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I was on very low carb diet late summer early Fall into winter.  At Christmas I came off and ate Christmas sweets, cookies, etc, etc... so good. By New Years I began with severe diarrhea with urgency.  Extremely fatigued, my physician started me on doxycycline, no help, put on lomotil, motofen- no help. Then started questran.  No help. Used verbizi, bentyl.  Not much better.  Had egd and bx showed villous atrophy.  But the antibody lab test for celiac was negative.  The dq2 and dq8 genetic testing showed dq2 positive, but dq8 negative. I also had microscopic colitis in the sigmoid at the same time. All other lab work was WNL.  No physician with straight up tell me yes “definitely “ celiac.  I don’t understand why the gluten antibody test was negative, when the biopsy pointed to it.  I’m so confused and wishing the doctors would say yes this is what it is, and if you follow diet, all will be fine.  I’ve been gluten free 4 weeks now.  Feel better, no real diarrhea like before, but would like to get definite answer.  My family has some immunological diseases such as lupus, RA, diabetes, but no celiac.  Anyone else have contradictory findings?



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Eab12,

This is a blog post. . . .you might not get much response here.

You might want to start this as a thread in the forum section.

Eating low carb .. .might of been low enough in gluten to lower your antibodies levels but enough to still attack your villi. . ... and villi don't heal right way anyway.

Most people follow up on biopsy at a year to see if villi are still damaged ... and your's obviously still are. .... one confirms the other (often) and doctor's don't want to say absolutely you have celiac without them both being positive.

But for you I would say "Positive" is positive. .. but doctor's want both of them to be positive to be sure of your diagnosis. . . but for me I was diagnosed by blood serology only.... this is more common (today) than it i used to be. If either is positive then you can be positive for celiac disease ...doctor's are trying to confirm it is not a "false" positive.

See this huffpost article about this topic.

https://www.huffpost.com/entry/gluten-what-you-dont-know_n_379089

You might want to have your stomach acid tested too ....being low in it can lead to inflammation.

I hope this is helpful but it is not medical advice.

Posterboy,

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Some celiacs are seronegative.  Some celiacs never test positive to the screening TTG.  Did you received the complete celiac panel (TTG, EMA and DGP)?  I test positive to only the DGP IgA even in follow-up testing.  

Many things can cause villi damage:

https://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/

However, you probably have celiac disease because you have the genes and you are already improving on the gluten free diet.  Remain gluten free for a year and get retested.  Your doctor may then give you a firm diagnosis.  But you might find that feeling better is all the assurance you need.  

Hey, I am the only diagnosed celiac in my family and they are riddled with autoimmune disorders like RA, Lupus, Crohn’s, Thyroiditis, etc.  

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