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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Store.

Still A Bit Confused By Celiac Disease (Also: Celiac Petition)

3 posts in this topic

I've been researching Celiac Disease like mad and I am still, admittedly, confused by some of what is said about this illness. This recent video and petition discusses the confusion about Celiac Disease (video below). And by the way, I've been treated this way countless times by doctors, so sign the petition and watch the video by clicking here. I also saw my GI doctor for the first time and he treated my Celiac Disease by handing me a pamphlet and told me to stay away from Gluten. So I thought, okay. That is simple enough.

From this video with TV Actress Jennifer Esposito says, "...They think you eat a Gluten-free diet and therefore you're better. And that's not the case." I understand that the Gluten-free diet is one of the most important aspects of treatment. My thought was eating Gluten-free would help heal well...mostly everything on its own because that is how it has been explained to me. I suppose I really don't know enough. And the information my GI Doctor gave me was simple, "Eat a Gluten-free diet and you are better." He didn't say anything all.

She also speaks about nerve damage, stomach problems, etc. Does anyone know of other associated with Celiac Disease? Is there a list? And what do I do to get proper diagnoses (of course, see a bettet GI doctor for starters)?

Anyway, I'd like to say it is becoming far too common with how rudely this doctor's treat their patients - or just other people they either don't believe have these ailments or they just don't like. The petition is short of the needed votes, and I have seen work many times before.

Also, what he said at the end about stress and that it obviously took a tole completely overrided her and her doctor's explanation of Celiac Disease. She explained that Celiac Disease was the culprit of her knees giving out (exhastion). He explained and finalized (he is the doctor!) that stress was the culprit. I don't know if this was policital, to downplay Celiac Disease, or what was going on, but it is inexcusable.

Thanks for your help.


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Hi Robby-

Here is the University of Chicago's complete list of symptoms that are associated with Celiac Disease. The malabsorption of nutrients caused by celiac damage of the small intestine can effect any system in the body -- the human body will compensate when missing nutrients until it can no longer function. This is why those of us that went undiagnosed, misdiagnosed or dismissed for decades are often in very poor health by the time we get diagnosed.

Keep reading, researching and learning - I remember well when I realized that simply removing gluten wasn't going to be enough to get my body to heal, but healing is possible given time and determination.

How were you originally diagnosed/told to remove gluten - based on blood work? endo? symptoms alone?


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I was diagnosed by an Allergist who did blood work on me. My Iga level was 138.09/20, which I have asked out here and have heard that is pretty high. From here on, I've just been eating Gluten-free but still feel absolutely terrible. Something is still wrong and I have seen worthless doctors, which is eating up a lot of time and money.

I definitely have the determination. Seems like it is lacking in many of the doctors I have seen.

Thanks for the reply!


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    • How do you know what's causing what?
      I am in same boat, yesterday my stomach was churning and bloated and I don't know what the cause was.  How about keeping a food diary? Just note what you ate and how you feel. A few days may be sufficient to discern a pattern, either some rogue product or a previously unknown intolerance. I have read that after gluten is removed further intolerances which were hidden can become apparent.  I don't know whether you could cut yourself some slack from a full vegan approach whilst your body heals? If not, maybe you could substitute say milk with coconut milk or similar to give your body a break whilst keeping calcium levels high? If you join coeliac uk you can check your sauces etc on their gluten-free database, they'll also send you a book which became my bible until I got a hang of which brands I could eat safely. Finally, have you excluded cross contamination from pots and pans, toasters, shared condiments etc?  Good luck!
    • Blood results - odd
      My results were similar – Low ferritin but normal B12. Although my ferritin levels were low, my Iron serum levels were normal. So might be worth getting your iron levels checked out to see if you have any deficiency in Iron. Also I was deficient in Vitamin D, which is perhaps more of a problem in England rather than the US - Our milk isn’t supplemented with vit D and we obviously have less sunshine.
    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels.
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum! theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
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