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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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SeMeCl

Specialists?

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I have Celiac, but have had very little medical or family support on this area of my life. I would like to know if I should have a doctor or specialist. What do they do for you? What are the benefits?

This is a non-issue until I get back to the US in 3 months, but I would still like some answers.

(Any suggestions of good doctors in Colorado?)

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I have Celiac, but have had very little medical or family support on this area of my life. I would like to know if I should have a doctor or specialist. What do they do for you? What are the benefits?

This is a non-issue until I get back to the US in 3 months, but I would still like some answers.

(Any suggestions of good doctors in Colorado?)

How were you diagnosed? A little more information would be helpful to answer your questions. And, welcome.

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I was poorly, but almost certainly correctly diagnosed through a blood test by my family physician.

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I was poorly, but almost certainly correctly diagnosed through a blood test by my family physician.

Well, recovery time depends on the dedication to the diet and the extent of damage done before gluten free diet began. Have your begun the diet?

If you feel you need to see another doctor or have further testing, you must continue to eat gluten.

I would suggest that you have a metabolic test done to check for any deficiencies due to Celiac and go from there. Any GP can order that done.

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I was diagnosed at the age of 15 by my family physician. He took a blood test and told my family to look up gluten, he said I was mildly gluten intolerant. There was no biopsy because I only learned a year after my diagnosis that this could be important in addition to a blood test. I don't even know what the blood test said to be honest or what was tested, no one ever discussed that with me. I don't have doubt that I am sensitive to gluten, but I also don't know if there are other conditions affecting me or what I need to do in addition to the diet for myself. I have been on the gluten-free diet for the most part since 2002, but I have week or 2 periods where I eat some gluten.

Do you think I should seek a specialist? Is it worth it to have these questions answered?

I am out of the country until January so I plan to stick to gluten-free until that time, but I wonder if I should revisit this diagnosis once I return to the US.

Any opinions are helpful.

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MORE COMPLETE, MORE DETAILED, MORE RANTY. (Couldn't edit the other.)

I was diagnosed at the age of 15 by my family physician. He took a blood test and told my mom, who told me, to look up gluten on the internet. He said I was mildly gluten intolerant.(He also told me I could eat some gluten.) There was no biopsy because I only learned a year after my diagnosis that this could be important in addition to a blood test. I don't even know what the blood test said to be honest or what was tested, no one ever discussed that with me, and I don't believe anyone told my mom either. Because of results from the elimination of gluten, I don't have doubt that I am in some way sensitive to gluten, but I also don't know if there are other conditions affecting me or what I need to do in addition to the diet for myself. I have been on the gluten-free diet for the most part since 2002, but I have week or 2 periods where I eat some gluten. I finally am at an age where I can drive myself to a doctor, a specialist if it is necessary. I just don't know what the specialists do, I had a terrible GI for a possible IBS diagnosis, which was never resolved, I just got told, "maybe it's IBS because we can't say it's anything else..." (2 tests and a shrug of the shoulders). I was given 2 medications, but stopped taking them because I quite frankly didn't trust the GI's opinion and I am tired of medications. I have been on birth control since I was thirteen for never regular menstrual cycles, which have gotten increasingly worse, and ovarian cysts (in a 13 year-old). I am considering seeing a OB GYN again for this problem. I am sick of birth control, when I need it for not getting pregnant, fine, but that is more of an option (I know this is for a different forum). So there is my situation.

Do you think I should seek a specialist? Is it worth it to have these questions answered?

I am out of the country until January so I plan to stick to gluten-free until that time, but I wonder if I should revisit this diagnosis once I return to the US.

Any opinions are helpful.

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Okay, well when you say specialist do you mean a gastrointestinal doctor? If you do they are doctors to begin with. I have a doctor and a specialist and it sounds to me like you should get a gastrointestinal doctor ;)

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Maybe a nutritionist or dietitian. You need to know how important it is to stick to the gluten-free lifestyle. A little cheating here and there can do a lot of damage.

Where are you going outside of the US? Many places in Europe are much easier to deal with when it comes to eating Gluten-free. In places like Finland and Sweden (I believe) they even have Gluten-free Big Mac's at McDonalds.

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I am talking about a gastrointestinalist, I just feel that I have not been given enough information about my gluten intolerance or Celiac or whatever. I'm trying to figure out if it would at least be a good idea to sit down with someone that knows about Celiac and at least say what they have to say. I know its a little late in the game to consider this (considering I didn't have a voice when I was diagnosed and a mother that didn't ask enough questions.) But late is better than never, right?

I was also considering a nutritionist to help me get on track. Unfortunately, I am already out of the country (in Chile) and although it is not completely unfriendly to the gluten-free it certainly is not Europe or even the US as far as the subject is concerned. So I can't actually get started on things until January.

I just don't know if I should just say "Okay, I'm gluten intolerant or have Celiac. Let the diet continue (I do plan on continuing the diet)." or say "I need/want more answers from someone who knows what they're talking about and will listen to me."

Separate/Related question: How important is it to know exactly what's going on?

Thank you all for your responses. I really need help in determining what is best from people that have done medical end of things.

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Once back in the US, you may find good information from local support groups. They may be able to recommend doctors that are well-versed in Celiac, as well.

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Where in Colorado?

There are a couple great GI doctors in Colorado Springs. Depending if your insurance covers Dr. Scot Lewey or not. My dtr had him for a while due to crohns but they quit taking our ins. We've had 3 different GI offices in town and they are all great. 3 of us have GI issues.

http://www.celiac.com/authors/45/Dr.-Scot-Lewey

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I live in the Denver Metro area, but I am willing to drive to Colorado Springs for a good doctor. My dad lives in the Springs (my hometown WHOO HOO) so I have a place to stay if I need to.

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I wish I could talk to a doctor now and find out if they think further testing is a good idea. Then I would eat gluten, and risk getting sick while I'm not at home, but I would have 2 months of solid gluten in my body (I have been off and on the diet for a while, but have recently been really good) and I would not have to delay testing to get sick at home. If they think it isn't worth it, then I'll stay on track with the diet.

Being away sucks. I know this all may sound weird, but consider it like this, I'm basically just starting off despite some sort of a "diagnosis." I want answers, I want to get to know my body and actually find out what exactly is going on and I am willing to do anything to get the information. For those of you that may not understand just think of when you had no answers, but knew something wasn't right, then you'll understand.

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SeMeCl,

Some people seem to need the official diagnosis with an endoscopy/biopsy result. Others feel that dietary response is all they need to convince them. Each person is different in this. Always bearing in mind that even if you did have an endoscopy, it may not be positive for villi damage. And, if you are "only" gluten intolerant, there may not be any villi damage, even if you are eating gluten. And many GI drs don't acknowledge the existence of just gluten intolerant - it's either Celiac, or IBS!

As far as your question about what a specialist could do for you. I'm only going on what I read here in the forum because I am self-diagnosed (supported by Enterolab results) and avoid doctors if possible. Other than run tests, most GI drs don't seem to know much beyond diagnosis (if they even get that right) - I mean, they don't help you with understanding the diet.

I'm sure there are some nutritionists who really know about living the gluten-free life, but from comments on this board, they are far and few between. Most would agree that you get more information and support on this forum than from any professionals - and it doesn't cost you a cent.

I'm thinking that it really boils down to a mindset. After the anger and pity party (we all go through this) comes acceptance, and with that comes the determination to do what's best for ourselves.

Now, if you want to find out if there are other contributing health factors, you may want to get blood level tests done (I can't tell you what they all are, but there are others on the board who could make suggestions.) Many gluten-intolerant people are also sensitive to other foods and it might be beneficial to have the IgG blood test for foods. I don't think you need a specialist to order these - just a doctor who is willing to do some detective work and not just rely on pharmaceuticals to treat symptoms without finding out what's causing them.

Hope some of this is helpful to you.

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