First time posting
 

Greetings, and thanks for all the information made available here re: celiac.

I'm currently suffering from a severe case of neuropathy, and I have almost every symptom of celiac disease, except my initial blood work comes back negative.

My question is procedural. What is my next step? What kind of doctor do I go to get further testing? What testing should I have done?

If any can recommend a specialist in Los Angeles, I would be grateful.

Thanks

-- Dennis

Welcome Dennis. Did they do a celiac panel? Do a gene test? I have double DQ1 genes, which is a gluten intolerance + neuropathy gene. Sometimes, when you have DQ1, you may not test as having celiac disease, yet you may be gluten intolerant too. If you exhaust all tests, and get no real answer, then go gluten free, and see what happens. You have to go totally gluten free though, not just a little.

Did they do a B12 level? Many gluten intolerant are also B12 deficient, which also causes neuropathy.

My PCP tells me I am celiac, DQ1 or not. I also have neuropathy. I have been taking B12 for 4 yrs now, and I have significantly slowed the progression of PN.

Well, just some thoughts!

Looking for a celiac doctor?
 

You have to see a Gastro intestinal specialist {GI}, they will be able to help you with your possible celiac disease. Have you been tested for a wheat allergy? {It's just a blood test} That is how they found my gluten allergy levels to be high, then did an endoscopy biopsy of my upper intestine to find the celiac.