Can I Trust My Doctors? Some Help And Advice Please!

[Ikgbrd 0]

I just wanted a little bit of advice and to vent a little bit to people that are familiar with celiac. I'll start by saying I've had some pretty bad digestive problems the last few years (constant loose stool, extreme discomfort after eating even the smallest amount, and lately frequent diarrhea.) a couple months ago the problems began to get worse and I found myself having to call into work more than I'd like because my unpredictable bowels.

I've been consulting my family physician this entire time, as well as other doctors at their office and their nurse practitioners. All of them insisted to me that I had IBS and all I could do was try to eat a bit healthier. I know my body though, and the difference between eating healthy and not, and this was much different.

Finally, I basically demanded any tests they could run on me. Low and behold, I came back with an deamidated IgA of 38, which from my understanding is a pretty strong positive. I'm meeting with a GI doctor in a week, but I'm still very frustrated with my family physician.

To start with they immediately instructed me to stop eating gluten about three weeks ago. I've been gluten free since, but afterwards I've found out that that can keep me from getting definitive results from the endoscopy. But now I'm scared to start gluten again.

I was in to see a nurse practitioner today because I missed work due to diarrhea and needed a doctors note. I'm pretty positive the diarrhea was caused by eating chicken from a gluten contaminated fryer, but the nurse seemed skeptical and kept talking about IBS rather than celiac. STILL. he even said that people with celiac can eventually add gluten back in their diet in small amounts, which I was very skeptical of.

All in all, gluten free, I feel a lot better. I'd say my symptoms went from being severe to mild, and I haven't had nearly as many bad days. I'm just getting so many mixed messages, and I'm scared my GI doctor is going write me off without helping me as well.

Are these normal celiac symptoms, how conclusive are the blood tests, and should I be finding a new doctor? I can really use some help, I'm feeling pretty powerless and like no one understands what I'm going through, not even my doctors.

[nvsmom 334]

Welcome to the board.

Your symptoms are pretty common to celiac disease. With a positive DGP IgA and a positive response to the diet, I would say that a celiac disease diagnosis s a lock. The DGP IgA is a pretty reliable test. On pages 11-12 of the following report, it discusses the specificity of each test (how likely a positive result is caused by celiac disease), you have a 3-6% chance that your blood test was caused by something else.... But that is before considering symptoms. http://www.worldgastroenterology.org/assets/export/userfiles/2012_Celiac%20Disease_long_FINAL.pdf

Not all (or many) GP's realize that you have to continue to eat gluten for tests to be valid. If you can, you should resume eating gluten. If not, let your GI know this and maybe they'll hurry along any testing they want to do on you. Some celiacs have positive autoantibodies and villi damage for quite a while (I still test positive after 1 year gluten-free) but others heal much more quickly - there's no real way of knowing which you are.

Ignore that nurse practioner. He was completely wrong. Celiacs can never eat gluten. Ever. It hurts us. Consider gluten evil.

Good luck with the GI. I hope the appointment is helpful.