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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.

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I’ve got a twofold problem, and any advice would be greatly appreciated.

First: I was just diagnosed by an IgA test at my doctor’s office. (I’m going in for a biopsy next week.) I’ve been going to this doctor’s office, a regular family practice, for a few months and I’ve seen a different doctor every time—I think they have a lot of new doctors on rotation, etc. Every time I go, I explain that I’ve recently been diagnosed with celiac disease, and the doctor and med student or whoever disappears for half an hour and then comes back and hands me three printed-out pages from the Celiac Sprue Association, which they’ve obviously just run out and Googled. I keep having to educate them on the topic. I really need to find a doctor who knows what she/he is talking about and who can answer my questions! I live in New York City… anybody have recommendations?

Second: My doctor’s office referred me to a nutritionist, at my request. I called to make an appointment and the nutrionist’s office told me to check with my insurance company first. I did (I have Blue Shield of California—my employer is based in CA although I am in NY) and they told me they only cover nutritionist’s visits for diabetics! The woman I spoke to had never even heard of celiac disease! Never mind that, like diabetes, celiac disease requires a lifelong medical diet in order to maintain health, and never mind that ABSOLUTELY EVERY resource on the topic says that the first thing any newly diagnosed celiac should do is to run, not walk, to a certified nutritionist. I’m sorry I don’t have a more popular disease, but celiacs need health care too!! Argh. As you can tell, I’m just about ready to start breaking some skulls (figuratively, of course!)—it’s so frustrating to deal with a health care system that exists solely to prevent sick people from getting health care! But all of you know all this (at least, those of you in the US certainly do). Has anyone fought the insurance company to get care? Have you won? Does it help if your doctor calls? Has anyone taken them to court? I have no money, but I am willing to fight.

Thanks in advance for any help—I keep posting questions and you all have been wonderful!

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Sarah, first of all, are you already on the gluten free diet? If so, why are they doing a biopsy? If not, are they trying to rule out celiac with the biopsy or just confirm? Either way a positive blood test is enough, if you are already having issues with your insurance company, why go through an unnecessary and expensive biopsy if you already know what is wrong?

You need to question your Dr.s on everything, especially if they don't seem the first bit knowledgeable about celiac.

Also, unless you luck out and find a qualified nutritionist out there, most nutritionists (Based on mine and others experience) don't know the first thing about the gluten free diet, OR their info is outdated.

Last. This site is full of some of the most knowledgeable people when it comes to the gluten free diet, and IT"S FREE!!!

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I am so lucky to have a wonderful doctor. He is an MD, but leans heavily on the holistic side of things. I get acupuncture from him and I also get his time. He really listens, and thinks, and give me good advice. If any of you are in Western Ma (or willing to travel) he is a real blessing!

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A very large percentage of nutritionists are pretty much useless when it comes to celiac. You'll learn a lot more on the Internet.

But I can't understand why an insurance company wouldn't pay for a diebetic to see one -- they'd rather pay the hospital bills when the person doesn't understand how to follow the diet?

richard

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Hi Sarah,

I have Blue Cross of CA and they will pay a portion of chiropractic and acupuncture. Maybe Blue Shield does too? I say this because there are nutritionists and natural medicine practitioners who will get a chiropractic license basically for insurance billing purposes. If you find one who does "both" you may get insurance to pay.

That said, I doubt a nutrionist would be worth your time, and may even give you bad information. Go online to reputable sites. Also, find your local celiac support group/organization and TALK on the phone or in person with one of them. This is the fastest and most reliable way to get info on everything, and you can get all your questions answered, and they are happy to share this info with you (for free).

Hth,

Merika

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