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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.

Don't Know What To Tell The Doctor....help Please?
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5 posts in this topic

Hello,

I've been having stomach problems for awhile now and am seeing a GI specialist who didn't feel it was warranted to test me for celiac. Based on everything I'm reading, I disagree, but I wonder if maybe I left out some important details when discussing things with the doctor. He was very rushed and didn't give me much time, so I just discussed the worst of the symptoms:

-bad diarrhea and occasional constipation

-bloating and severe gas

-indigestion

-fatigue

I've had other problems as of late, such as severe headaches, hoarseness (especially when waking which I've never had before), muscle aches and others which I didn't think we're relevant to mention to the doctor. Also, I was reading about the skin condition associated with Celiac (so sorry I forgot it's name) and I realized that I have something like that as well. I always assumed they were just pimples, but I always thought it was strange that the bumps I get are almost always bilateral! And I never thought to mention that to the doctor.

Anyways, when I brought up celiac, he said that I would be thinner if I had it. I could be wrong, but I didn't think everyone with Celiac got really thin? I've lost about 15 pounds in the last month and a half without effort, but I'm still slightly overweight...however, I gained the weight a year and a half ago when I started the drug Paxil, so I've not always been this heavy.

Anyways, I went back to my regular doctor and said I really wanted the Celiac test done, and he's doing it even though the GI wouldn't...what does everyone here think? Is that a waste of time? Is there other things I should be telling the doctor?

Sorry this post was so long, I"m just very frustrated.

Thanks,

Kelly

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Hi Kelly,

If you have a rash that could be Dermatitis Herpetiformis, then you could try going to a dermatologist and ask them to biopsy the rash. They would look for IgA deposits in the skin.

I personally would mention all your symptoms to any doctor you can get to. Odds are that one of them might notice something the others missed.

I was told the same thing by one of my previous GI doctors, about the fact that I weighed too much to be Celiac. That is just not true. Weight gain can also be an symptom if Celiac in some people. And most people only lose weight when theyir intestines are damaged to the point that they are not absorbing much of anything at all.

Let us know what the test results say. I ended up doing the same thing, getting the blood test done by my primary doctor, since none of the GI's I went to would do them. I was unintentionally on a low gluten diet, and my bloodtest came back negative. I don't know if there just wasn't enough damage in my intestines to cause the antibodies to reach my blood, or if I wasn't producing very many antibodies due to the low gluten consumption, but I have such a severe reaction to gluten that I knew it was my problem. I ended up being tested by Enterolab. Positive for the main gene for Celiac and positive for the antibodies as well.

God bless,

Mariann

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The doctors never did recognize what was wrong with me. I had to do the research myself, much as you are doing. Finally, I found a GI doctor on this website who was experienced in celiac disease and I had him do the biopsy myself. I don't have insurance, so I paid the approximately $2500 myself on my credit card. I'm really glad I did, because I would have just gotten sicker and sicker and then had the cascade effect of all the other diseases that are able to come in on the coattails of undiagnosed celiac disease.

In my opinion, a doctor who is too rushed to give you the right amount of time or too know-it-all to listen is a bad investment. Much of the info available on celiac disease now is very new. Unless a doctor is really keeping up on the latest details, they probably wouldn't know what they needed to diagnose you. The thing about celiac disease is that you can have it and have very atypical symptoms, or no symptoms at all and still have it in there, doing the damage. The blatant symptoms come when all the damage is done. Trust yourself and keep going! Good luck!

Gerri

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My personal opinion is that you should tell your Dr about everyhting that seems not normal to you... I did the same thing. I have had so many problems, some severe and some exremely minor. When going in to my thyroid Dr, they wanted me to update the list of current or issues that I have had in the past. I thought some of the questions were ridiculous.... But as it turns out he is actually the one that ordered the tests. I will not 2nd guess those questionairs anymore. They may have saved me. I would also strongly suggest finding a Dr that you feel you have the time to tell him everything. I HATE FEELING RUSHED!!!!

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Before I was diagnosed I would write down any symptom on a piece of paper, then when I went to the dr I would take that paper with me. I also tried to monitor body temp.

Sometimes it is easy to get into the office and forget key things that you wanted to tell the dr about, so write it down!! It sure helped me.

-Jessica :rolleyes:

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