This Doesn't Seem Like Celiac To Me

[Pagosapig 0]

So my doctor thinks I may have celiac disease, but the longer I am gluten free the less I am convinced. I have been gluten free for almost nine months now and I really haven't had any significant improvement. Initially I had some improved symptoms (but I tend to attribute this to being more deliberate about taking the right medications at the right time). When I stopped taking my medicine (antidepressants and Imodium) my symptoms return. I do eat gluten free, but the foods I eat without terrible D seems to be chicken and peanut butter...which isn't really a good mix for prolonged health. I met with my dietician recently and we tried to make out a list of new foods to try. So naturally I tried following here list to the letter, within 24 hours of trying to introduce more complex foods I had terrible symptoms (prepare for some serious tmi here folks) I had terrible stabbing pains on the left side of my abdomen that have lasted for a week (though have diminished in intensity), fairly consistent diarrhea, nausea, loss of appetite and occasional blood in my stool. Now these didn't seem like celiac to me so I went in to urgent care, they sent me for blood test and a small bowel follow through. I have not heard back from these yet since it’s the weekend. To me these seemed like some kind of IBD, does anybody have any input or words of wisdom about this?

 

It should be noted that my doctor thinks that I have celiac because I have one of the genes that makes it more likely, even though the biopsies they have taken and what they have seen in my colonoscopy/endoscopy have not shown any villi damage.

[SMRI 32]

Did your doctor do the blood tests for celiac before you went gluten free? Having one of the genes is not enough to make a diagnosis!

[Pagosapig 0]

My doctor did the blood test, but my iga levels were not elevated very much at all. Not in the range you'd expect for celiac. Thats why I am suspisious that this isn't celiac

[kareng 2,265]

Having the gene does not mean you have Celiac. I would push the doctor to look for other things. And.... From my understanding, it isn't a good idea to just stop taking antidepressants. You may need those - no matter what other health issues you have.

You could show your doctor this:

http://www.cureceliacdisease.org/archives/faq/if-i-have-a-gene-for-celiac-disease-does-that-i-mean-i-have-it

[nvsmom 334]

So you did have a positive test, it just wasn't a high normal?  With celiac tests, generally a positive is a positive - just like a pregnancy test.  The tTG IgA can occassionally (<5%) get a weak false positive that is caused by thyroiditis, diabetes, chronic liver disease, colitis, crohn's, or a serious infection, but usually it is celiac disease.

 

These are the tests for celiac disease:

tTG IgA

tTG IgG

DGP IgA

DGP IgG

EMA IGA

(AGA IgA and AGA IgG - older and less reliable tests)

total serum IgA - not a celiac disease test but a control test to check for IgA deficiency which can cause false negatives

 

It sounds like you have some other serious food sensitivities.  Have you tried the FODMAP diet?  Some have problems with histamines (mast cell activation disorder).  Some just react to certain foods like corn, nightshades, and/or dairy.  Maybe you fit i there somewhere.

 

I hope you feel well soon.

Edited to change a word "positive" to "normal"

[Pagosapig 0]

The range my Iga test fell in was just at 4%, which from my research sounded like a false positive. And since my biopsies didn't show anything conclusive it makes me think that it is time to look into anything else. I have tried the low fodmap diet and I also found no relief and I have done my best to rule out any common food sensitivities. As far as mast cell activation disorder nothing has shown up like that on my blood tests, but I will definitely bring it up and see if that's a possibility. Since it seems to be nonresponsive I'm curious about the possibilties of something chronic