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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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About carrielynn

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  1. I'm going on a 100-mile bike ride this weekend. The last time I did this, a friend handed me a recovery drink concoction and "forced" me to drink it... it really helped and I didn't feel sore at all the next day. I don't remember the brand... I am now on a gluten-free and dairy-free diet and am wondering if there are any gluten-free/DF recovery drinks that I can purchase quickly at a Whole Foods or health food store -- as in Friday (May 4). Thanks for any information...
  2. I know, I know. I really, really thought this woman had lost her marbles when she led me through this little tapping/singing/counting exercise. But it worked on my problem when nothing else did. I learned how to do it myself and have been able to mitigate some other extreme emotional responses that I've had. The testimonials are pretty amazing on the website and there are a number of well-respected people who support and use it. Since you can download the manual for free and try it, you really don't have anything to lose except some time.
  3. If you both are willing to try anything, you should take a look at Emotional Freedom Technique (EFT) -- see http://www.emofree.com/ which provides a ton of free information and instructions on how to do it. I saw a therapist who used this technique on me. This is a woman who I respect 100% and who has helped me tremendously with other issues using other respected therapies (biofeedback, neurofeedback, CBT, etc). I was experiencing an extreme reaction to someone and I couldn't get past being very angry at him. She performed EFT on me, started tapping on my face and on my hand and asking me to roll my eyes, count and sing while I thought about this person. I honestly thought she had gone cuckoo, but since I was paying a lot of money for the session went along with it. And it worked! Most of the issues I had with this guy just went away! (I had been battling these emotions for years and they were just gone... now he doesn't bug me at all.) The EFT folks use this technique for just about everything, including the phobia you describe here. Give it a shot and see if it helps. You can do it yourself or find an EFT practitioner to work with you.
  4. What kind of thyroid tests did the doctors do? What were your results? I see a thyroid expert (nationally known, written a prominent book, etc.) and he says I probably have hashimoto's disease based on how my thyroid feels and also a sonogram. He can't say definitively without doing a biopsy. I've been taking thyroid medication for 4 years. The last time I saw this doctor (6 months ago) I told him about my inability to lose even a pound and my chronic constipation and he shrugged and said my thyroid was balanced with the medication and that I may need to see another doctor about this problem. I got tested for gluten sensitivity through Enterolab and the results came back positive for gluten and dairy -- I'm showing an autoimmune reaction to both. I have been off of gluten and dairy for 3 months and have experienced a pretty dramatic change in my bowel habits. Within 1-2 weeks of going gluten-dairy free, I went from really bad constipation to daily diarrhea, which is VERY unlike me. I had diarrhea for about 2 months and am now "regular" without diarrhea. I've also lost 5 pounds because I basically can't eat the crud I used to eat, and I feel a lot less bloated. I think dairy may be more a problem for me. I tried going gluten free for 2 months last year and had no detectable changes. It wasn't until I cut out both gluten and dairy that I noticed the big changes. So I don't know what to tell you. You may well have a problem with your thyroid that the doctors don't detect. And you may also have a gluten and/or dairy sensitivity. You could spend a lot of money and find out with Enterolab. You could also just go gluten/dairy free for 2-4 weeks and see if you notice anything. Report back.
  5. My diet has been the same, except for no wheat or dairy. I haven't added anything new or exotic. I have lost 3 pounds though! When I took the enterolab test, I was drinking lattes, eating ice cream, cheese dip, etc. So my results were reflective of me eating quite a bit of dairy. I don't really feel differently, except for the "free-flowing" output, as you put it! I'm sure the Enterolab results only indicate that there's a casein intolerance, not the severity of it. Your score was quite a bit higher than mine -- that was with your little slip-ups versus my full-blown dairy diet. But I'm thinking that my severity was just limited to constipation from time-to-time. No-one else in my family has ever commented on problems with dairy. Thanks for everyone's replies! All stories and advice are welcome!
  6. My husband was diagnosed with celiac disease about a year ago. I went gluten free for 2 months and didn't notice any difference in how I felt. I went ahead with the Enterolab testing and the results indicated I have 2 gluten intolerant genes and that I am having immune reactions to both gluten and dairy. The stool testing results were: Gluten sensitivity Stool Panel Complete Fecal Antigliadin IgA 33 (Normal Range <10 Units) Fecal Antitissue Transglutaminase IgA 18 Units (Normal Range <10 Units) Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units) Cow's Milk Protein Sensitivity Stool Test Fecal anti-casein (cow
  7. We went to Disneyworld about a month ago and had no problem at all with the Disney restaurants. At every single Disney restaurant we went to they brought the chef out who told my husband what he could and could not eat. At one of the restaurants they sent very hot (freshly made) gluten-free rolls to our table along with the meal. (We told every restaurant ahead of time of our food needs and our information was put into a computer so when we checked in the hostess knew what was going on.) We were very impressed, to say the least. Disney deserves huge praise for the attention they've given to this.
  8. Thanks for these responses! Which leads me to my next question... and I know there's no one answer, but how long before I start feeling better if the gluten and dairy is bothering me? My husband, who is a true celiac, started feeling better pretty quickly. Of course he may have been feeling so bad before that any improvement was registered as feeling better. He's been gluten-free for 8 months now. He had lost a bunch of weight prior to going gluten-free but is now gaining it back. Other than the soy sauce (it was in teriyaki sauce, so it was very small amount), I don't think I've had any gluten. We're pro's around here with this stuff and we eat at home quite a bit. When I have eaten out I've limited myself to salads with meat. No blue cheese or croutons, etc. Only vinaigrette dressings. I do get moody and have "down days" from time-to-time so it would be great if this new diet resolved that.
  9. Hi everyone, I sent off a "sample" to Enterolab and recently got my results back. I had previously done the genetic test and found out I have two gluten sensitive genes. Here are my results: ********************** Gluten sensitivity Stool Panel Complete Fecal Antigliadin IgA 33 (Normal Range <10 Units) Fecal Antitissue Transglutaminase IgA 18 Units (Normal Range <10 Units) Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units) Cow's Milk Protein Sensitivity Stool Test Fecal anti-casein (cow
  10. Thanks everyone for all the suggestions and thoughts. The interpretation on my Enterolab report said: "Interpretation Of HLA-DQ Testing: Although you do not possess the main genes predisposing to celiac sprue (HLA-DQ2 or HLA-DQ8), HLA gene analysis reveals that you have two copies of a gene that predisposes to gluten sensitivity (DQ1 or DQ3 not subtype 8). Having two copies of a gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of the gene. Two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity may be more severe." So I'm not ruling anything out and I should get the stool sample test and probably the blood tests too just to see what they say. I just know that my husband felt better pretty quickly and I felt no different after two months of strict gluten-free. We're mostly gluten-free at home... we've got a shelf of non-gluten-free stuff, but my son and my husband know not to touch anything there. Thanks again!
  11. I got my Enterolab genetic results and, like many people here, am confused. Here they are (drumroll....) ************* Gluten Sensitivity Gene Test HLA-DQB1 Molecular analysis, Allele 1 0301 HLA-DQB1 Molecular analysis, Allele 2 0602 Serologic equivalent: HLA-DQ 3,1 (Subtype 7,6) ************* My husband and I both got genetically tested because our son was diagnosed as celiac by a nutritionist. My husband and I both went completely gluten-free, as strict as we possibly could. I was strictly gluten-free for two months and felt no different. (Don't get me wrong, I've got some health issues, but they stayed the same when I was gluten-free and when I wasn't.) My husband did feel differently pretty quickly and noticed improvement. His Enterolab results show that he has a celiac gene. The nutritionist told me that I need to go gluten-free anyway. After reading the Enterolab site, it seems that their opinnion is the whole US population should go gluten-free because we all have gluten sensitive genes. So my skeptic hat is on... my husband does need to go gluten-free, we've discovered. But must I also? I'm willing to give it another shot, but frankly if I notice no improvement, then it's more of a hassle for me.
  12. Our son has celiac. We did the cheek swab genetic test with Enterolab and he has the HLA DQ 2 celiac gene and also a gluten sensitive gene. He's been gluten free as best as we can control for a year and he's doing much better with his mood and energy level. My husband and I did the genetic test after finding this out. My husband's side is the one who has the celiac gene. My side does not (I don't have the gene at least). Our nephew (from my husband's side) is showing what I think are suspicious symptoms for potential celiac disease. He's 4 years old and is growing just fine. But he has really bad yellow teeth, so bad that they had to get them capped. He also broke his arm a couple of weeks ago after falling a very short distance (he fell forward off a very low couch)... it really was a minor fall that kids do all the time. It's just weird that he broke his arm so easily. We are wondering if he has celiac disease. Is it possible that if he has celiac disease that his bones are weak?
  13. Enterolab

    We see very good doctors who we trust who could not figure out what our (now) 6 year old was allergic to that was causing his severe eczema. We took our child to 4 doctors in our city and to one doctor in another city that has several medical hospitals with top doctors in the state. No-one could figure anything out. Then we went to see a PhD nutritionist in our city who ordered a celiac workup. This guy seems to have a dual-reputation, depending on who you talk to. If you talk to the doctors who we respect, they think he's a quack, especially our allergist, who we really like a lot. If you talk to people who have seen him for their problems, they think he's a godsend. Anyway, this guy told us that our son had celiac disease based on the test results and had us take him off of gluten and dairy. Within 3 weeks our child's personality had changed dramatically. He went from being a moody tired little guy to being a happy energetic little boy. We'd been so focused on the state of his skin that we hadn't noticed the personality problems until they went away. (Life was unhappy all the way around in our household because of his problem.) His skin did get better, but he still itches and scratches constantly, so he's still tearing his skin up. We've since added dairy back and in and we don't notice any difference with the itching... if he's on it or off of it. We decided to do some more research on the celiac situation, since the only person who told us he had it was the Phd nutritionist. We did the Enterolab genetic test for him and it came back positive for a celiac gene and positive for a gluten sensitive gene. So my husband and I are getting tested to see who has these genes. Based on those results we'll do further testing. Either one of us (or both) could have the celiac gene. It could be me because I have all these little health quirks and he doesn't. However, he has relatives who have similar skin problems that my son has, as well as depression issues and migraines and other things. Anyway, back to the point of your message. I feel like I'm in the middle here. I really do respect all these doctors and I think they are smart. But the reality is, the only thing they ever offered my son was steroids, both oral and topical. The steroids definitely treated the symptoms and made his skin look better, but they didn't treat the cause. These doctors are not trained to find the cause. It doesn't mean they aren't smart or they don't care. But their training is oriented towards treating symptoms.
  14. My family will be going on vacation in Boothbay Harbor Maine. Does anyone have experience or information about gluten-free options there? Thanks!
  15. Thanks for all your replies. I should add that he itches all the time anyway... that's been a constant for several years now. We hoped that would go away when he went gluten-free but it didn't. But it was weird that he woke up in the middle of the night with an itching "attack". My husband told me that the humidity is at 25%, so his skin is probably super dry, which could have caused the attack. Who knows. On one hand it would be nice if he had a standard gastro reaction so we would know when the accidental glutening happens. On the other hand I guess it's nice he doesn't have bad gastro problems (that we know about). --Carrie