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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.

Newbee And A Runner
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6 posts in this topic

Greetings everyone. I have just been diagnosed with Celiac. Through blood test only. I have a couple questions. I apologize first because these may be repeat questions, as I'm sure as new people are diagnosed, they have questions that have been asked before. I have read a lot of the board, but not all of it. My first question is, Any celiac runners out there? If so, when you do your long runs, what energy bars or what carbs do you "load" on? Also, as I mentioned I have just been diagnosed through the blood test and my Dr. is currently talking to a gastroenterologist to get me hooked up with. I know all doctors are different, but is is customary for the specialist to want to do a scope to confirm diagnosis? Also is this definately a hereditary disease. My parents are shocked as well, as they have never heard of Celiac and they are frustrated as well. It's sometimes hard to explain everything to them, they are in their 70's however, so I assumed they wouldn't have heard of this. I haven't either until now. They can't believe they would have it. I'm not telling them they may at this point, I will wait to see what the gastro. says. But you have any answers, they are appreciated. As you all probably know, my first reaction was that of depression and (I don't know why) anger. I'm calming down now and I'm accepting this. I believe I can do this, but wow, this will be one of the biggest challeges in my life. I'm glad you all are here! This site and board look wonderful. God Bless you all.

Sorry for the lengthy message.

Have a great day!

Christina

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hi christina-

welcome to the board. I am sure you will find it a life line, as most of us have. As to your questions, I am not much of a runner, but I am an athlete (mostly of the biking, boating, x-c skiing sort.) your question comes at a good time, as I was jsut working on it today. I have been taking almonds and chocolate chips with me, or Enviro-kids bars. the berry one is pretty yummy, though not all that powerfull a fuel.

I just called up Hammer Gel and Clif Bar today. Both guys I spoke to seemed very knowledgable. The guy at Hammer said that all hammer porducts are gluten free. I only use their gel, but he said it was all safe. the clif bar guy said that at this point NONE of their porducts are gluten free, but they are working on developing a gluten-free bar. He said that the clif shots have barley in the brown rice syrup.

It is a hard change to make, and a big one. BUT, two months into the gluten-free diet, my body is starting to feel strong again. I feel strong out on my bike for hte first time in too long. Stick with it, and I hope that you get to discover a whole new body.

Good luck

Libby

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Hi Christina,

Can't help you with the running part, but I would recommend you speak to your doctor and a nutritionist about this. Try to seek out a knowledgeable nutritionist, they can be most helpful. Unfortunately, the nutritionist my doctor sent me to see knew less about the gluten-free diet than I did! I have recently found much more knowledgeable nutritionists (of all places - at my local grocery store!) that are very helpful.

On to the medical part of your post. Yes, it is very typical to do an endoscopy and take several biopsies of the small intestine. While the blood tests have become much better predictors in recent years, the biopsy is still the only sure fire test. Do not be apprehensive about the endoscopy - they will give you a mild sedative and you won't remember a thing. Mine was a breeze!

Yes, Celiac absolutely is a genetic disorder that is inherited. If you are positively diagnosed, and if you are rich, you can have everyone in your family genetically tested to see who is responsible! :P However, just because it is hereditary, does not mean one of your parents will have the disease. One of them has the gene responsible for the disease, but there is something that triggers the gene to make it activate the auto immune system in the disorderly manner which is Celiac. Not everyone carrying the gene will develop Celiac.

I absolutely understand your feelings of anger and depression - been there, done that! Trust me, those feelings will pass! I have been gluten-free for almost a year, and other than some minor bumps on the road, I feel better than I have in decades!

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nthei, You have probably already come across this advice, but be sure NOT to go gluten-free prior to your biopsy as that may influence the results.

Many of the gluten-free grocery sites (some advertise here and you can do a search) sell energy bars that are good. My favorite is the Bumble bars.

Good luck and welcome! :D

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Thank you so much everyone for your replies and advice. I'm sure in the beginning, at least, I will come asking more questions, as I'm going through the motions of getting a complete diagnosis. My family seems to be more frustated then I am, arguing that I can't possibly have it and what not. I know they fear for me and they know that I'm scared about this initial phase, but I don't like fighting with my support structure. I also think they are scared of the possibility that they may have it, so thank you for the advice on that subject.

I must apologize, I am definately new as proven by my post, I didn't know how and I accidentally created a new topice, I'm sooooo sorry. Will do better in the future.

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Carb Boom is another gluten-free energy gel option (it and Hammer Gel are two of the tastiest out there--imho).

Search the Hammer Gel website (http://www.e-caps.com/) for "gluten free" and you should get two hits. One speaks to the gluten-free status of their products and the second is a surprisingly lengthy response about Celiac Disease--including some of the genetic aspects.

Carb Boom's FAQ talks about gluten-free here: http://www.carbboom.com/energygelfaq.htm#15

For hydration & electrolytes, Ultima Replenisher is gluten-free (see http://www.ultimareplenisher.com/news/story.cfm?ID=37).

Good luck!

-------

Update: I just received a response back regarding Endurox R4--a recovery drink from Pacific Health Labs--confirming that it, too, is Gluten Free.

Edited by txgoblue
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