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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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
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luvs2eat

Do You See Your Gi Regularly?

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I read about everyone's doctors... and wonder if I should be seeing my GI on a regular basis. To be honest, I saw him exactly twice... once to be examined and schedule my blood work and again to have my colonoscopy. He told me then that he had good news and bad news.

The good news was that he knew what was causing my unrelenting diarrhea... the bad news was that I couldn't eat gluten anymore. This was from my blood work alone.

As a (former) nurse and one who's cooked my whole life (I was 49 at the time), I was able to find good food lists... I went gluten-free that day and wasn't often accidentally "glutenized." As I saw steady improvement (I've mentioned before that it took almost a year for my bowels to get back to what I considered normal) I've not found it necessary to go back.

I've been gluten-free for several years and I'd be hardpressed to submit to a gluten challenge to have an endoscopy. Is there a reason to keep seeing the GI doc?

OR... is seeing the rheumatologist once a year okay? About a year after going gluten-free, my blood work showed a high ANA titre... so I had to have almost all my blood removed to rule out Lupus. I see the rheumatologist once a year to repeat this bloodletting and have no Lupus symptoms or elevated anything in my blood. Of course we talk about celiac disease in our discussion of autoimmune stuff.

What would you do if you were me?

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I don't know what you should do. But I don't see a GI either, and I feel fine with that decision. I do see my acupuncturist regularly, and she helps with the celiac symptoms.

What would a gi do with you? Once they tell you you have celiac, that's sorta it right? And, recent research shows the blood test to be every bit as good, or better, than an endoscopy.

Merika

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Wow! What's that deal with the lupus test? They think I may have lupus or something else as I have high ANA too, but I have actually had two flare ups of symptoms. They have never mentioned the blood thing though.

I don't have any current plans to go back to my GI. I've thought about having the blood test run again to see if I'm truly gluten-free, but I don't think the GI would have to do that. I wouldn't want to do the gluten challenge either. Especially because symptoms are usually worse when you go back on gluten.

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I did not see my GI but about once a year until I got significantly glutened last year. After that, I have seen her regularly to follow up on some on-going problems related to the celiac disease. Hopefully I will get back to the once or twice a year follow up again one of these days. I would not worry about it unless I had specific GI symptoms that needed follow up, especially if your primary care doc is reasonably knowledgeable and accepts celiac disease as an issue.

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I only see my GI every 3 years. I have the blood test to check my levels and a small bowel with follow through x-ray to make sure there are no cancer cells. However, this was BEFORE I found out that the barium I have to drink is not gluten-free! The last time I got very very sick on the way home. I will have to discuss this with him next time.

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Sorry, mytummyhurts... I was trying to be funny about the Lupus blood tests. The rheumatologist ordered this whole battery of tests and it took 9 vials of blood to do them all. The guy sitting across from me asked if they were gonna leave me any blood??? haha

He tested everything blood might tell him and examined me, asking questions about every single system to determine that my only symptom was the slightly elevated ANA.

His explanation of an autoimmune disorder was great! He told me my body was like a country (I asked him if that was some kind of FAT joke??? ha) and my immune system was my army, poised to fight off any invader (disease). But sometimes when there were no diseases to fight, the army got restless and began fighting amongst themselves... and this internal fighting is an autoimmune disorder.

Anyhow, I see him now once a year, he asks me 1,000 questions, I say "no" to every one (cross fingers it's always that way!) and I'm on my way!

Thanks for the input on visiting your GI everyone!

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I haven't been back to mine in almost 2 years. I was actually just wondering today if I should go see him again before I start med school just to make sure my antibodies are low and everything. I had a physical with my primary doc a month ago though, and I'm not anemic (which is what happens when I get glutened a lot). Plus, I donate blood every 4 months or so and they check for anemia too, hehe. :-)

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Sorry, mytummyhurts... I was trying to be funny about the Lupus blood tests. The rheumatologist ordered this whole battery of tests and it took 9 vials of blood to do them all. The guy sitting across from me asked if they were gonna leave me any blood??? haha

Okay, I get it now. :lol:

I was going to say, that sounds like a weird test!

I know what you mean though, they do have to take a lot of viles for all the tests.

I've heard that some people even just in the general populations have high ANA and half of them never develop any type of disease related to those. Unfortunately, it is likely I have one as now I have had two flare-ups and it is not fun! Obviously! They were six months apart though and if it they stay that far apart I could probably deal with it. I'm just scared of the organ damage of the more serious lupus. I still don't really understand all of the different autoimmune tissue/joint disorders.

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In the beginning (right at diagnosis) it's usually recommended to go back in 3 months, then wait 6 months, then if the bloodwork is normal, a year, if not, every three months until it is.

You should visit your GI annually and have bloodwork done to make sure you're 100% gluten-free.

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