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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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

What Type Of Doctor To See?
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15 posts in this topic

I've been having stomach problems including diphasia and pain on the right side of my chest. In addition I've had disabling fatigue. Several weeks ago with the idea I haven't been getting enough fats, I cut out alot of grains from my diet.

Within a few days, much of the fatigue was gone as was swallowing problems and pain. I just had a barium swallow and gui study today which didn't show any structural problems.

Question is what type of specialist should I go to in order to get an accurate diagnosis. This is obviously out my family doctors league, but I've heard both gastrointernolitist as well as an allergy specialist and don't know where I shouild go. I did find out that it may take a month to get in to the gastro.

I've also read that I shouldn't attempt to go on a gluten free diet until I get tested since that may effect the test. I am only semi functional at this point and would prefer to not waste any more time. I've wasted many months going through work to be convinced that it is not an issue with depression.

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Welcome to the forum, cstoup!

My opinion is to a GI specialist.. one that's very familiar with celiac. I remember someone here mentioning that they called every GI specialist in the area just to find out which one had more celiac patients. ... but if that's what you have to do, it's worth it. And just because he/she is a GI specialist does not mean they know much about celiac... as many here could easily tell you. Someone here might also know of a good doctor in your area.

My next doctor visit is to a GI specialist that's very familiar with celiac (his wife has it) that's head of nutrition at one of our leading hospitals... figured I couldn't go wrong with the combo of both! ;)

I can't recommend what you should do about your diet because only you know how important a full diagnosis is and only you know how your body is feeling right now. It is important for you to know that if you want to see if your body is reacting to gluten (testing by way of blood tests and/or biopsy) you should not go gluten-free until your tests are done, as going gluten-free will alter your results. There are some diagnostic tests that can be done while you're gluten-free... perhaps someone here can shed some light on those for you.

Hope this helps!

Gretchen

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Definitely..........when my problems were mysterious, I first had the family doctor, then was sent to a GI, and once it was pinpointed, to a celiac doc........start broad with a GI and zero in once you find out for sure if the problem is celiac disease or if it's something else.

You can attempt a gluten-free diet without being tested, cause if you feel better, that's a test in itself. However, if you want to get formal results, you should stay on a gluten diet so that blood tests or a biopsy are accurate.

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...I first had the family doctor, then was sent to a GI, and once it was pinpointed, to a celiac doc........start broad with a GI and zero in once you find out for sure if the problem is celiac disease or if it's something else.

It's like the evolution of a diagnosis and being proactive about your health is key.

Gretchen

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I first went to a GI because I didn't know what my problem was. Then after I still had problems after going gluten-free.. I went to an allergist. It seemed to be a smart path.

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Thanks for all of the replies. It sounds fairly unanimous that I should go to the GI first.

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I think it's important to have some things ruled out.. many conditions have similar symptoms to celiac.

Gretchen

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A GI will definitely diagnose, treat, and perform Celiac tests as quickly as possible. I remember that some members of this forum have said that Naturopaths (sp?) have been especially helpful to them. I discourage an initial Internist visit, but that's mostly because of my long, drawn-out diagnosis process, which is an experience most Celiacs go through beforehand. No matter which doctor you choose, make sure he/she is knowledgeable about the disease.

Good luck,

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Ironically, my diagnosis path is quite different... I have never been to a GI. I went in to my doctor, after noting going gluten-free for two weeks helped, told her about my symptoms and the diet results, asked for the blood test, and she ran it. Came back inconclusive, she said "do a dietary challenge", I had a reaction, and there's the end of the story. But I trust my GP, and she trusts my judgement as well, and that makes a big difference. (She's not uber-knowledgeable about celiac disease, but relatively up to date.)

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:huh: Uh, this may apply to my situation, so I'm just wondering, what is what you are calling a dietary challenge? Anyone may answer this if they know being as tarnalberry may not see this.

- Dan

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Hello Dan,

I have no experience with it (at least yet), but Tiffany (tarnalberry) did post about the subject here if you'd like to check it out: http://www.glutenfreeforum.com/index.php?showtopic=2866

Gretchen

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I thought maybe I should tell what my situation actually is. I had been gluten-free for about 3 months with miraculous results. I had absolutely no problems with my health at all as long as I was gluten-free. However, my family were pushing me to get an official diagnosis. So I finally made an appointment and went in. My doctor has placed me on a non-gluten-free diet until further notice. I have been in physical distress all this time since. This was only about 5 days ago, but I began to feel the results imediately. I've spent more time in the bathroom these last five days than in all the three months before. It seems like everything I eat makes me sick. I should also point out on a different note that since I'm eating food with gluten in it, food containing gluten seems to have no taste since I've been gluten-free. I even ordered a dominos, which used to be my favourite pizza, and it tasted like glue with a touch of grass. I think I know what I want to hear, but I don't have the emotional strength on my own to defy my family's wishes, and I feel they will respect my condition better with an official diagnosis. I was sent to an allergy specialest also, who discovered I'm allergic to natural vegetation growing everywhere within 800km of my home, and that wasn't what I wanted to hear. It did explain why I have a cold most my life. But I was there to rule out wheat allergy. Am I going about this all wrong? Perhaps a response to this may also provide insite for the person who started this thread.

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You can do a dietary challenge without doing a strict elimination diet, and that sounds pretty much like exactly what you've done. You eliminate the potentially offending food for a while, then reintroduce it, and see how you feel. (You are "challenging" your body with that food." This is considered part of a formal diagnosis of celiac disease, by the way. (A positive biopsy AND an improvement on the gluten-free diet seem to be the _technical_ definition of celiac, but some of us don't go any farther in the investigation other than to find out we're gluten-intolerant, because the end result, treatment-wise, is the same.)

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This is a great question- what kind of doctor to see. I was diagnosed by a dermatologist who said having DH means I absolutely have celiac disease. My GP knew nothing about celiac disease or DH- had no idea that my Thyroid problems could even be related. I asked if I needed follow up testing or blood work or anything and my GP just shrugged- said if I feel fine, just stay on the gluten-free diet if I could stand it. I see a GI doctor on Wednesday, but since my GI symptoms have disappeared, I wonder what they can do for me? I'm confused about the alphabet soup of blood tests IGA TGA??? We'll see what this doctor says.

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If your after a quick indication, asking your GP for the blood test may be an option, no? Whether or not you have elevated levels should give you a starting point. You could even try an elimination test whilst awaiting the results if you didn't want to wait.

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