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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Frustrated With Dr
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2 posts in this topic

I just received my results back from my endoscopy and colonoscopy. Everything was negative. When I asked how many biopsies the Dr took, the receptionist said 7 (but only 1 in the small intestine). He did not do a blood test prior to the procedures. My PCP who referred me specifically said to test for Celiac. My instructions from the GI office is to continue Prilosec (which was giving to me Oct 3) and take Immodium and return in 3 months. I feel like the last 2 months have been wasted and no telling how much $$.

My choices are

1. Go back to my PCP and ask for a celiac panel. Dr visit: $100+ costs of blood tests (my annual blood tests run $125-200, so no telling how much a panel will cost).

2. Follow the GI instructions and be in pain for 3 more months and then pay $150 to see him again.

3. Go to another GI, which who knows how much that will be. Probaly $150-225 for office visit. Plus tests costs. My endoscopy/ colonoscopy was $1000 (hospital fee)+ dr fee+anesthia fee (haven't received bills yet).

4. Go gluten free and see how I feel.

Since the end of August to now, we have/will spend about $2500-3000 for my digestive issues and really didn't testing done that needed to be done. With our high deductible, this is all out of the pocket.

Crohns, Ulcerative Colitis, Cancer, Bacteria, etc has been ruled out. But now I'm wondering if that is bogus too since he ruled out Celiac.

The reasons I wanted a dx was so I know how careful I need to be, whether or not to get my son tested, and to have "proof" that im not crazy..

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If I were you....I would talk to my regular Dr. since he seems to be on board with the Celiac thing. Let him know exactly what you put in your post about the lack of biopsies and that the GI was an idiot. Then ask him for the Celiac panel blood tests. Do the blood work then after giving the blood for said blood work I would go on a gluten free trial. Depending on whether you're willing to spend more money to go see a new GI doc for another round of biopsies. If you are, wait for the biopsies to be done and then do the trial gluten free.

 

How frustrating it is to have doctors that don't know what they're doing when it comes to this. There is actually a topic here in the forums devoted just to that....but I don't remember off the top of my head where it is.

 

Hope you can get some answers. Either from doctors that are doing a decent job or from your own trial and error.

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