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      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 is Celiac Disease and the Gluten-Free Diet? 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

apprehensiveengineer

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  1. Itching of short duration.

    Are you currently gluten-free? Did you have the rash while you were still eating gluten? I have found that though I still get flares, that they are much less itchy now than when I was eating gluten on a daily basis. My words come with a grain of salt as I have not had my rash biopsied (I am however, quite confident it is DH). When I was eating gluten, I was so itchy that I could not sleep and had trouble concentrating on stuff during the daytime. I fantasized about burning my skin off/bathing in bleach (obviously I did not do either of these things). I was basically beside myself itchy. It was worse at night, but also exacerbated by sweating. I would sometimes stop in the middle of a run to scratch because I couldn't take it. I've been gluten-free for 3 years, and super, super gluten-free for almost 1 (ie. minimal packaged food, no eating out etc.). The rash still itches, but tapers off much faster and is much less intense. If you're already gluten-free/have a celiac diagnosis, getting the rash biopsied might not be all that useful (have to be eating gluten to ensure positive result). If you get other skin conditions ruled out and still have the rash, it might mean that you need to be more careful about being gluten-free. In my first two years gluten-free, I followed the general recommendations for those with celiac disease, but found that I couldn't fully shake the rash. Advice from this forum about being more conservative/careful helped a lot.
  2. Mars bars

    Got bored waiting at the grocery checkout and remembered to check the packaging. In Canada Mars Bars appear to not be gluten-free, as they contain barley malt. It is indeed clearly labelled on the packaging/allergen warning.
  3. If you suspect you have lyme disease you should get tested for it. You don't necessarily need to have the classic "bull's eye" tic bite reaction. I've not had it, but know people who have and it can be quite devastating if left too long before treatment. The symptoms of lyme disease and celiac disease overlap quite a bit, so difficult to tell unless you test. You could of course, have some other random bacterial/viral infection (mono?). So maybe run it by a doctor. That said "flu-like symptoms" could be related to gluten ingestion. Aching joints, headaches, and lethargy are common. I've never seen chills/sweating as an official symptom, but I do get that personally (especially at night). I think I've seen other people say that on this forum as well. I noticed that you said you felt worse when exercising/wanted to get back to the gym. I was a collegiate track athlete/still pursue the sport and have found this to be particularly challenging. I think that when you are still symptomatic, the best you can do is to take it day by day, and be conservative. It took me about 2 years of being gluten-free to be able to train consistently and not feel like I was always holding my self back. Some of this was the learning curve with the diet, but I also think that I was still recovering from the previous years of hard training in a depleted/sick state. Even though I am much better now, there are still random days where I feel terrible. If I have a hard session scheduled, I'll change it or move it back a day or two. I'll probably still exercise, but keep it light and stop if I feel myself breaking down.
  4. Stopping Dapsone Question...

    I have not taken Dapsone, and cannot provide any experience with regard to any potential side-effects coming off it. Here are some things that have helped me. People with DH appear to be more sensitive than "regular" celiacs, so an extra layer of caution may be required to get rid of the rash: 1. Don't eat out. 2. Don't eat food that you have not prepared yourself in a clean environment. 3. No oats, even those labelled gluten-free. 4. Limit high iodine foods (seafood, table salt, dairy) temporarily until rash fades. 5. Follow a dietary protocol similar to the Fasano diet (no processed foods, gluten-free or otherwise). After rash is under control, consider adding foods back in, taking note of effect on rash. Even if all these things are done, the rash could still take a while to go away completely. I have seen a big improvement in the last few months after really bearing down and doing the things I've listed. I do still get some sporadic "breakouts" in response to being cc'd, but much better than before.
  5. Gluten ingested by the mother does not transfer to the breast milk in a sufficient amount to cause intestinal damage in a baby with celiac disease: https://www.breastfeeding.asn.au/bfinfo/coeliac-disease-and-breastfeeding Organic food is also irrelevant - organic farming practices still involve the use of pesticides, just ones classified as "natural" by the USDA. Natural pesticides may or may not be safer, as natural pesticides are not tested as thoroughly from a human toxicology perspective. At least with conventional pesticides, there is ample scientific literature on the effect of doses used in agriculture. Aka... just eat veggies and don't worry yourself or your wallet so much : https://blogs.scientificamerican.com/science-sushi/httpblogsscientificamericancomscience-sushi20110718mythbusting-101-organic-farming-conventional-agriculture/ I'm not saying that OP's concerns are not real - I'm just saying that she should investigate these problems with the help of an MD or a RD before making drastic and potentially deadly restrictions on the child's diet without due cause.
  6. Please please please take your child to a doctor for advice on changing his diet and/or testing for celiac disease. Growing children are very susceptible to malnutrition, and a restrictive diet should be avoided unless medically necessary. Last year an infant died because their parents insisted on keeping the kid on a gluten-free, vegan diet due to a self-diagnosed "allergy": https://globalnews.ca/news/3462366/baby-died-from-gluten-free-diet/ It is also my understanding that gluten proteins cannot be transferred via breast milk.
  7. I'm no geneticist and certainly no evolutionary biologist, but I think it is fair to describe the specific HLA DQ genes involved in celiac disease as "celiac genes." Unlike many other diseases (where genetics are more loosely associated with the disease), 100% of celiacs have those genes. Like with many genes, genotype does not equal phenotype. Many people carry the gene that causes red hair for example, but there are not many who actually have red hair. The interaction between these and other genes and the environment is unclear, but you need to have those building blocks to get the disease. This is why HLA testing can be used to rule out celiac disease in ambiguous cases or if a person is already on the GFD.
  8. Airborne gluten reactions

    Round-up/glyphosate does not cause a celiac reaction directly: https://gmoanswers.com/ultimate-gluten-free-does-glyphosate-cause-celiac-disease-actually-no You did not say if you had been formally diagnosed with celiac disease, but if so, gluten is harmful for you no matter where it comes from, even if you do not seem to react to it. Some people with celiac disease seem not to have strong/obvious reactions to barley for example, but it is most assuredly causing intestinal damage when they ingest it. If you have not been formally diagnosed, then perhaps you are not reacting to gluten at all - the foods we eat are chemically quite complex, and it is difficult to isolate which components might be making us sick. If you are able to eat gluten in China without issue, then it might not be the gluten. Perhaps there is some other subtle difference between your diet in China vs. Canada that is causing your issue. I hope that you are able to figure this out, as this can be quite frustrating. I think sometimes people with celiac disease or apparent NCGS hop on the conspiracy theory/alternative medicine train a bit because we feel that we have had our legitimate concerns disregarded by mainstream science. This is certainly true - research in this area is underfunded, and many healthcare practitioners are not up to date on existing research and give incorrect advice as a result. I don't think however, that is a good reason to abandon hope and reason entirely - I'd rather ride the bus with the flat tire than invest in a magic carpet.
  9. Parallel rash on chest + belly button?

    I have cold urticaria (hives in response to large temperature changes). Basically, I break out in hives if I take a hot shower or go from inside-outside on a cold day and don't wear enough clothing. The hives primarily appear on my upper stomach/lower chest, or on uncovered skin exposed to the temperature swing. I also get hives when I contact or ingest things I am allergic to (soy, grass, cats). All of these issues were diagnosed formally by an allergist/immunologist prior to my being gluten-free. You might consider seeing a specialist to see if you have any allergic conditions that might be contributing to your hives. I don't think any of these allergic problems I have have anything to do with gluten/celiac specifically, but these and my other immune issues (asthma) improved quite a lot after being gluten-free for a while. If that is indeed your issue, you might find that to be the case.
  10. This is something I wish that more people would consider. It's why it's so hard to get people tested who have less obvious symptoms. If you had asked me 4-5 years ago if I was in good health, I would have said yes without hesitation. I didn't seem to have any serious health problems, I was a high level athlete (how could I train/compete at a high level if I was not in optimal health?). Why would I think any different? It took being gluten-free for a while for me to realize what being healthy actually felt like. For example, I didn't know what it was like to not have a stomach ache because I'd always had one. 20+ years of stomach ache! I had nothing to compare the feeling with. I only realized when my stomach stopped hurting that I'd never felt that good in my entire life. When it comes back due to accidental glutenings, I can't fathom how I functioned like this before.
  11. Please Help DH rash on genitals?

    Dairy and eggs are high in iodine (as is seafood/fish), which aggravates existing DH lesions. You might find that after all the deposits leave your skin that you can re-introduce these foods, assuming you don't have issues with these foods for an additional reason.
  12. Share early DH experiences.

    Yeah, you should be ingesting gluten for a skin biopsy unfortunately. If possible, you might try to get one done now (with a current outbreak) on the chance that this might be sufficient to get something measurable. I had an intestinal biopsy/endoscopy done while gluten-free on the premise that there was something wrong with me, and so there was some value in taking a look at my intestines (and if you're in there, might as well check for celiac). You might try to frame it to the doctor like that - an itchy rash is clearly something and if you're going to try to figure out what it is, you might as well do a DH biopsy of it while you're at it. It might also be worthwhile pointing out that many with DH are seronegative because their bodies produce different auto-antibodies (eTG instead of tTG). Anti-eTG is not assessed at most labs. Rashes are tricky and difficult to diagnose because a lot of them are quite similar in presentation. What you describe does sound plausible as DH though, especially if it was associated with a gluten exposure. I have been glutened in crumb-infested/beer-coated places while not eating a couple of times (not touching your face is hard even for adults!). I know that some people have had success using disposable wipes for surfaces and hands, so that might be something you can do for school or birthdays where kid messiness will be an issue.
  13. I did a foray into the genetics of celiac disease after getting my HLA DQ screening done. It seems that the assumption that celiac disease is a "European disease" is more of an artefact of scientific racism/bias; white people have historically done most of the science (and still do to some extent), and so focus on their own populations a lot and so a confirmation bias exists. This has lead to the assumption that other ethnic groups are less susceptible. More recent screening has revealed that celiac disease is actually similar in terms of frequency in North Africa, the middle east and Pakistan/northern India. The highest rate of celiac disease is actually the Sahrawi ethnic group (Africa)! The common thread linking all these regions is early historical adoption of wheat as a staple grain. Presumably, the gene and/or the disease played a useful role in evolution in wheat-based societies at some point. Depending on what your specific ancestry is (East Asia is an ethnically diverse area), it's perfectly reasonable that you have celiac. Articles talking about non-European celiac disease: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3264942/ https://www.ncbi.nlm.nih.gov/pubmed/20639708
  14. Empathy!

    @cyclinglady Good to know - must have missed it! I saw the article when it first came out, posted on GFWD's twitter. Can't say I'm particularly surprised, given the lack of definitive instruction on many topics relating to the GFD. It would be very interesting if a follow-up study could be done where the effect of different lifestyle choices (eg. eating out, eating 'may contain' foods etc.) were made. This would certainly provide a basis for more specific instructions beyond "don't eat gluten," which is all I got. @Moggy - I am quite low income (grad student) and manage to do ok food-wise. All I have in my kitchen is a stove top, hand blender, coffee grinder and a kettle. I make my own flour (for pancakes and thickening) and grits using rice in my coffee grinder. I mostly just eat fresh meat, fresh produce, rice, and dried beans, all of which are inexpensive. I splurge a bit on chocolate, peanut butter, and coffee (whole bean). I make a lot of one pot stews, chili, soups and curry. I usually cook in big batches in a large stock pot, so that I only cook 2-3x per week and eat that same meal for lunch and dinner. A crock pot would work well too if you can afford one. I follow a low iodine diet, which has helped tremendously with the rash. You can google the details, but basically you limit seafood, fish, dairy, and iodized salt. It's not a forever thing, just until you've shed the antibodies from your skin. I found the results to be quite quick (within a few days), so perhaps consider trying this to see if it helps.
  15. Empathy!

    If it makes you feel any better, a recent study indicates that you are probably not crazy: https://academic.oup.com/ajcn/article/107/2/201/4911450 If you don't have time to read the whole thing, basically the "average" compliant celiac accidentally consumes >200ish mg of gluten in a day. The recommended max (to avoid significant intestinal damage, cancer risk etc.) is 10 mg per day. Kind of surprised no one has posted this article... but then again, it's easier to bury your head in the sand than to perhaps consider that what you already find difficult/restricting may not be entirely adequate. I'm betting that >200 mg adds up from small exposures in poorly controlled shared kitchens, occupational exposures, large quantities of gluten-free foods near 20 ppm, personal care products that you aren't supposed to eat etc. Those with only intestinal symptoms (or perhaps no symptoms) rely largely on imperfect diagnostic tools (endoscopy, bloodwork) to assess how well they are doing periodically - those with DH just need to strip naked and take a look in the mirror and can do so every single day. Anyways, I agree it sucks to be gaslighted by fellow celiacs and doctors on the issues that you described. Scientific evidence in the area of practical lifestyle decision choices for celiac disease is limited, and I think more people need to remember that when they make definitive statements.