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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.


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About mamabear

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  1. Happy birthday and may God bless you today!

  2. Celiac Sprue & Doctor Too!

    If you have celiac sprue, it is imperative you follow the gluten free diet in order to heal, but it unfortunately is no guarantee healing will occur. Fortunately that(refractory celiac disease) is the exception. Not sure what the latest statistics are. I think another benefit is decreasing your chances of having other autoimmune phenomena occur. I personally believe it is a spectrum of disease, with gluten sensitivity on one end and refractory sprue on the other...following the diet helps us to help ourselves!! Getting well and staying well. It's really not all that hard. Someone told me to think of it as eating what your great grandmother would have eaten 200 years ago(minus the bread of course!) processed foods, all fresh!
  3. Thanks from me,too, Patti........I haven't had a sugar cookie in 3 Christmases and I can't wait to try them! My kids have missed the annual cookie bake...we've done it, but I don't like to touch the wheat flour!! Puts a damper on their fun, so now we can have our favorite Christmas treats again. Any other suggestions or warnings as to the food dyes, sprinkles,etc...?
  4. Celiac Sprue & Doctor Too!

    I am so glad to hear you are getting some answers to your problems! Sounds like you may have gotten some docs to listen up and think outside the box,too. Good for you! Keep on getting well and please keep us informed.
  5. Celiac Sprue & Doctor Too!

    Many thanks to all for all the encouraging and kind words. I look forward to participating in this forum and continuing to accelerate my learning curve about celiac!
  6. Celiac Sprue & Doctor Too!

    Hi, Jestgar I found Gatorade helps; tonic water helps;multivitamins help;exercise helps........and I ,too, am fascinated by the spontaneous movements !! Calcium/magnesium/zinc tablets helped awhile, but they are twitching away right now!! However the Ca/Mg/Zn did help the severe charleyhorses I was getting. Sounds like you have a smart and compassionate doctor, and you are on the right track. Good luck to you!
  7. Celiac Sprue & Doctor Too!

    I think docs are reluctant to label a patient with a disease unless they have specific proof of the same. If you had no serologies or biopsy with which to diagnose, that's a different matter. Celiac is not as easy as diabetes when someone's fasting blood sugars are greater then 125. But if your blood sugar were 120,wouldn't you think you might have a problem?? Medicine is certainly not an exact science....surprise! And being suspicious when you haven't quite nailed it down is important. For you, I would suggest the visit to the GI. Giving up bread is just the start of a gluten free diet. Your symptoms and positive family history suggest the diagnosis, so let us know where you go from here. About half of my patients who have positive serologies/biopsies have normal to above average body size. Any one else have any ideas here?
  8. Celiac Sprue & Doctor Too!

    Did they do the full celiac panel of serologies on you? I have had patients that were first negative with the panel, then(by their choice) stayed on a regular diet, and when symptoms escalated, we retested. 4 of 6 patients retested showed antibody response. None of those had EMA or tTG. They were all celiacs by their symptoms and signs......refused biopsies.....went gluten free and are getting well. I think that gluten intolerance is part of the spectrum of this whole thing. Dr. Isadore Rosenfeld had an article in the Parade magazine this spring. He said celiac disease is 1% of Americans and wheat sensitivity is 30% !! Pretty staggering numbers.......So back to your question, I agree with Nikki-UK. I am personally not aware of any medical articles about it, but it would seem possible. If I get some more time this weekend, I'll check the PubMed website. Oh, the other 2 patients were convinced they would benefit from the gluten-free diet and also went gluten free.
  9. Celiac Sprue & Doctor Too!

    Wow......after reading this post, I would be satisfied with no biopsy and staying gluten free. Too many potential pitfalls for you with anesthesia.Unless they come up with an anesthetic you should be able to tolerate, I personally would not feel the need to get tissue diagnosis on you. There are researchers looking for even better specific/sensitive tests all the time, and biopsy might become a thing of the past. One advantage of biopsy to me is if you are not responding to the diet;and the biopsies worsen; and immunomodulating drugs are being considered, it would seem to help guide treatment. Maybe they'll get good enough to use serologies for that,too. Isn't the originator of this thread an anesthesiologist? Maybe he'll check in and offer some suggestions for meds that you can use.
  10. Celiac Sprue & Doctor Too!

    Oh, I feel the same as your GI. And I would imagine he still wants a biopsy to prove it beyond doubt. The antibody testing can be as misleading as the biopsies, so it still makes it tough to decide to do as a patient...less tough for the docs ordering the test. Knowing as completely as you can know, only empowers you in the years to come. As far as I would be concerned, you have it(only false positive I've read in the literature is for lupus... rarely) based on your positive tissue transglutaminase.....the biopsy should complete the picture. I can advise the patients I've known for a long time when they don't want the biopsies done...I know them well and may agree it's in their best interests NOT to do it. I also have seen in my practice that all patients who biopsy for sprue don't always have ALL serologies positive. One of mine only had Antigliadin IgA positive and her biopsy was positive. Having the absolute diagnosis opens up your doctor's eyes to follow you more intensely if things go awry. Hope this helps you to decide. It surely is a confusing condition!!!
  11. Celiac Sprue & Doctor Too!

    Lisa, Thanks for your insight!'s a question for us. How many of you all have muscle twitches in your long muscles? Eye twitches are fairly common, but I'm talking about visible movement(fasciculations is the medical term)...rather looks like a gutted fish belly.......My legs(primarily my calves) have been twitching (mainly when I am lying down) since the big onslaught of sprue , and before it was diagnosed. It occurred after major surgery to remove a cancerous kidney. And that is when the sprue went into overdrive. A neuro friend said he had no idea what it was from....I think maybe it's peripheral motor neuropathy, and unfortunately the gluten-free diet hasn't helped. Since it has not progressed into anything MORE ominous, I figure it is from sprue. One article said gluten-free diet did not change the neuropathies... Any one else??...Oh, also the numby/tingly thing but this is visible. Ann
  12. You may already have your answer to your condition, but celiac can certainly show low ferritin and no overt anemia. My ferritin levels were dropping with no blood in the stools and had not reached anemia ,technically speaking. Mine was that way, and a biopsy showed celiac sprue with villous blunting .The GI said the duodenum looked normal, but the microscope obviously disagreed! I had no prior blood work, so the "gold standard" made the diagnosis.
  13. Celiac Sprue & Doctor Too!

    It is the "Gastroenterology" journal...Nov.4 ,2006. It is only available as a subscription yearly, and that is $$$$$. This is the official journal of the American Gastroenterology Association. I am going to try and get a copy from my own GI. His office is close to mine. Thank you for your kind words and I AM getting a LOT from being here! I like the company I'm's such great reinforcement for me in so many ways. Back to the journal.....I wanted to see how far the GI policy makers have come with current thought. They must be getting up to speed if their most recent boards were peppered with celiac questions. But we still have a long way to go with hematologists(one article said 25% of iron deficiency is from sprue); rheumatologists(comorbid conditions like Sjogren's,fibromyalgia,RA,lupus,etc...) and neurologists( comorbid conditions like MS,peripheral neuropathy,ADHD,autism)...all of this is in current medical literature or buried in old studies/articles. I asked a neuro friend of mine who had called about an unrelated patient and asked if he ever screened for celiac. He said he has not, but after I tossed a lot of ideas at him, he said he would start. Check the National Library of Medicine website for recent and older articles. If you put that in a search, it will give you a link. It's a long web address and I just have it on my favorites. If you can't find it, I'll try and make a link....key phrase is TRY....I'm not that savvy on links. Most of it is available only as abstracts, but it is usually all you need.
  14. Celiac Sprue & Doctor Too!

    Maybe I wasn't very clear about this particular instance. I think that following the diet for this child is very important. I was worried about directly challenging him with gluten in order to repeat his testing. I believe that will occur inadvertently anyway, and repeat far as a small bowel biopsy...can be done later. Sometimes there is a positive slant to the negative testing. One may intuitively KNOW that gluten is the problem;you haven't made a paper diagnosis;you can follow a gluten-free diet ;and you don't have the insurance companies rating you. Sometimes patients and doctors want to have the final diagnosis pinned down(biopsy) . I personally believe that the serologies give us the story. Antigliadin IgG,Antigliadin IgA are very sensitive but not specific test. Antiendomysial antibodies are sensitive,but more specific and tissue transglutaminase antibodies are considered the most specific in the GI world. There are false positive and false negative results for TTA unfortunately. I have a patient who had only AGA IgA positive ...all symptoms fit celiac...I sent her for upper endoscopy and colonoscopy as she had blood in her stool on examination...the GI told her he doubted she had celiac...the biopsy was positive. He was amazed.....Goes to show it takes all kinds! And you have to be stubborn to keep looking for it. But as you put it, you can just go gluten free.....I have patients that do that,too. Saw two of them today who fit the clinical picture, but don't have the lab diagnosis. I think it makes it harder for them to stay gluten free for the long haul .....they may start slipping with the diet and without the hard evidence....some fall off the wagon. Makes it all quite a challenge. There are articles in the world literature that address doing gluten-free diet without a "proper" diagnosis. I'll try and find some and see if I can post a link. I'm "computer challenged" with some of this!
  15. Celiac Sprue & Doctor Too!

    I have no doubt in my mind that the biopsies can miss the diagnosis. I have a patient whose duodenal biopsies were negative, but was found to have the typical photographic abnormalities found on capsule endoscopy by the same GI doc. I sent her back to him when she continued to lose weight and have diarrhea in spite of being gluten free. It turns out she was not 100% compliant with the diet initially;partly due to hidden glutens. I am happy to say that she had regained 4 pounds of weight on her last visit. Her serologies returned to below normal prior to the endoscopy. Also her unusual rashes(not DH) are resolving now. So, I hope your GI guy reads his current literature! There is a huge review article in Gastroenterology Journal published the first of this month. I want to see how the AGA addressed the need for diagnosis and treatment updates. Since I don't subscribe to it, I'll have to borrow one from one of the GI's. Let us know how the return visit goes. Oh, TIMING is everything in medicine.....if your gut had recovered before the biopsy, it could easily have been read as normal. Also there is some discussion in the literature as to loosening the pathologic diagnosis by calling it earlier when the lymphocytes are infiltrating the villi and not after they are blunting. So, maybe ALL of us celiacs are getting something happening in the celiac world!