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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? - 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


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apprehensiveengineer last won the day on October 14

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About apprehensiveengineer

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  1. Travel with toaster?

    I've done a lot of "hotel hobo-ing" pre-gluten-free and post-gluten-free. Previously, I did a lot of traveling for university sports and was concerned with saving money/having reliable food that would be nutritious while competing. Now I am more concerned with not getting poisoned. Bring [dry] rice or corn grits and cook them like oatmeal using either a kettle at the hotel or in the microwave. This does not take up much room in a bag for flying. I personally make my own rice grits using my coffee grinder (do not use brown rice though - it'll take a long time to cook!), but you can probably buy them pre-made. You might also be able to snag single serving honey, peanut butter, jam, sugar, salt from the hotel itself if you're super thrifty . But I usually just buy a jar of peanut butter, tub of yogurt and some fresh fruit or vegetables from a grocery store. Maybe some jerky if I'm feeling fancy. If the hotel room doesn't come with a kettle or microwave, you can ask for one. I have never had a problem asking for either a kettle or a microwave when I told the staff I had "severe food allergies" or a "medical reason." . You could also use the coffeemaker to boil water/prepare stuff, but I would not if you are sensitive. Lots of people like old, gluten-eating me use the coffeemaker to cook instant noodles and oatmeal (yes, it does actually work). I would hazard that unlike the mugs/cups they give you in the room, the coffeemaker only gets a superficial rinse between customers. I personally bring a single use drip cone and filters for my coffee or just get the hotel coffee.
  2. Nail polish?

    Not saying it's common.... but wheat protein is sometimes an ingredient in strengthening nail polishes. 5 minutes on google found this: 1. "Dr Remedy" http://www.remedynails.com/ 2."Opi" https://www.opi.com/care/care-product/nail-envy-bubble-bath#CM8tslgy8DXDV5P9.97 3. "Nailtiques" https://intl.target.com/p/nailtiques-formula-2-nail-protein-5-fl-oz/-/A-14898479 I'd say... google the brand and read the ingredients. A lot of nail polish removers seem to contain wheat protein as well (found this on my 5 minutes of google). Nothing is sacred.
  3. 1. "It's a rare disease [I don't see why society should have to accommodate or understand it]." People can't fathom that a disease that affects 1% (or perhaps up to 3%, given a recent study) of the population is an extremely common disease. Like... it's one of the most common lifelong hereditary diseases in the world. Type I diabetes and adult peanut allergies affect 0.5% and 1% of the population respectively - most people agree that these are common disorders that deserve some kind of accommodation/general understanding thereof. But for some reason celiac is "rare" and we can't go around making special rules for all people's little problems! 2. "You seemed fine when you were eating gluten." I am sorry I dared not to divulge my personal medical details to you at a time when I was scared and didn't know what was wrong with me. I can see that this was quite disingenuous, because 'no news' implies perfect wellbeing and harmony in all aspects of life. I should have made some dramatic, oversharing social media posts so that all my loose friends, acquaintances and distant relations might be aware of whatever embarrassing and/or mysterious symptoms I have as they happen.
  4. iron question

    Good on you for continuing to train! I'd tread a bit cautiously, as injuries are almost purely a function of your system being overloaded with stressors, whether that be too much mileage, too much intensity, poor nutrition/sleep etc. Celiac disease compounds these issues which are common problems with all runners. If I am not feeling good, I take it day by day and do what I can, even if it is not much or not fast (or nothing at all). I find that running puts your health under a microscope a bit - there's no hiding or pretending away mistakes because the watch does not lie! Often, the first indication that I have been glutened is that I will feel terrible while running - acid reflux, vertigo/dizziness and inability to maintain my normal easy running pace. I think if I did not have this and DH to rely on, I would miss most of the minor CC issues I have had. As a result, I find I am much more conservative than most celiacs with my eating habits - I haven't eaten anything I have not prepared from scratch myself in over a year, and avoid almost all gluten-free substitute products and almost all processed foods. It's certainly a pain, but my ability to run at a high level is more important to me than the normalcy afforded by a more relaxed GFD. Each must find their own balance, however, and I don't judge people for not feeling the same way. Although it's possible that you are still recovering from previous stuff, I'd recommend being very conservative with your diet for a bit (search Fasano diet). This is the advice I wished I'd received when I originally began the GFD - it's much easier to figure out if foods are bothering you if you have an optimal baseline to compare with. After being sick for so long, it's sometimes hard to tell what's "normal", so by being conservative for a bit you'll learn what your body is supposed to feel like (I had no idea I'd had a stomach ache for 20 years lol). Then you can add back stuff and have a good idea if it's working or not. Best of luck with your upcoming training and may the mileage gods be on your side
  5. Airborne gluten reactions

    Nice. I'm talking butternut, spaghetti, pumpkin. The hacksaw actually works beautifully, I just need to buy a kitchen-specific one. Squash are woody in texture, so you power through it in about 10 seconds if you have good hacksaw technique
  6. iron question

    I am a very high mileage distance runner and I've been taking iron pills daily since I was 16, when my ferritin was 0 and my hemoglobin was 90g/L (very, very bad). Since diagnosis/GFD at age 24, I've become much less reliant on iron pills. Previously, I was taking 130+ mg of elemental iron a day to maintain proper bloods (our coach has us our whole team get a CBC done 3x per year). This is a lot of iron and I have no idea why any doctor thought this was ok, but I guess this proves that if you jam enough iron into yourself, you can defy anemia even with untreated celiac disease. In my last 2.5 years since diagnosis, I've had a bit of a mixed bag of ferritin results. I actually stopped taking iron for a while during my first year and came back with normal-high values, but recently I have been anemic stemming from a very bad glutening I sustained in May. At my 2 month "re-check" my ferritin was better, but still bad (improved from 9 to 20 ng/ml), presumably because my gut had not entirely healed from the previous episode and/or I was experiencing some low level glutening. So to answer your question... I'm not sure I would worry about the saturation results as I think those can be "off" is when your body is in the state of trying to rectify its low iron status. If your ferritin is going up, things are working. The other thing to know is that if you run a lot, you will need more iron in general as the high impact nature of running damages red blood cells, causing them to have to be replaced more often. Depending on when you were diagnosed, your gut may also be less able to absorb iron than regular folks. I definitely would not stop taking iron if you are a celiac runner with demonstrated iron issues, especially if you are a pre-menopausal female. If it's bothering your stomach, you might consider switching brands or taking a lower dosage pill more frequently (this is better for absorption anyways). I currently take 60mg of iron per day, but in two pills in addition to keeping on that steak and liver. I've never tried liquid iron, but I know many who vouch for it, so you could try that too.
  7. Airborne gluten reactions

    Oh geeze. That's horrible... and that would definitely do it. I live in an older apartment (c 1940s) in which the drywall is definitely wheat-based, and realized I kept getting sick when I cooked squash. I knew that the squash was not the problem (obviously), but stopped eating it nonetheless as the pattern was clear, even though I couldn't figure it out. Sometime later, when I was going through my toolbox, I realized that my small hacksaw (which I used to cut the squash - much easier than using a knife) was sitting amongst all these drywall screws that I had removed from the walls recently. D'oh! Now, I had been washing the hacksaw before/after kitchen use... but since the edges are serrated, it would not be possible to get rid of any serious wheat contamination. I felt very, very stupid and now I suffer through using my kitchen knives on my squash. Anyways. Glad you figured out what the problem is and hopefully they're done construction soon. These mysteries happen to the best of us!
  8. Enzymes and Probiotics

    Gluten is an umbrella term for the storage proteins that are found in grains. They are all slightly different in structure, and an autoimmune response occurs when celiacs are exposed to those found in wheat, barley, rye and oats (in some people). Some people may also have an intolerance to corn or an allergy, but that is likely separate from celiac disease unless the corn is contaminated with gluten (which it can be, depending on the source). I for example, am allergic to soy. It makes my throat and mouth itchy immediately. This is separate from celiac disease, and many celiacs enjoy soy-based foods without problems. I don't know enough about the validity of the methods described in the study you linked to be sure, but it doesn't seem to be that conclusive - no significant differences between controls and celiacs were found for corn. Essentially they took syringes filled with corn or wheat gluten and emptied them into people's rectums (no eating involved) and measured gases emitted (farted out) that are correlated with inflammation for some time afterwards. I am not a scientist in this field, but this doesn't seem a great proxy to me as most of the celiac response is in the small intestine. They do talk about "some" celiacs having a "small" increased gas output in response to corn, but that was less than the response to wheat gluten. Maybe those people are allergic to corn or have another inflammatory bowel disease? So essentially, I'm not really sure that they've found much here. I would also avoid Gluten Free Society's website. A lot/most of their information is not factual or presents facts misleadingly/without context. That said, corn may genuinely be something your system does not appreciate. If that's the case, don't eat it.
  9. The incidence is actually increasing, as frozen blood samples from WW2 show lower rates of celiac disease when retested: https://www.sciencedaily.com/releases/2009/07/090701082911.htm ] It is assumed by most scientists that the hygiene hypothesis plays some role in the increased rates of autoimmune diseases and allergenic diseases in the current population. An interesting example of this is that in an area of Finland bordering on Russia (very high living standard), the rates of celiac disease are much higher than just across the border (lower living standards). The populations are essentially the same except for sanitation. Link to that study here: https://www.ncbi.nlm.nih.gov/pubmed/18382888 It seems that though there is a weak correlation with amount of gluten ingested and development of celiac disease on an individual basis, this is unlikely to be the cause from a population perspective as the amount of gluten ingested by the average person has not changed in the last hundred years or so (when rates were lower). This is despite popular health-blogger-guru-whatever conjecture to the contrary - we actually used to eat way more wheat (https://www.ers.usda.gov/topics/crops/wheat/wheats-role-in-the-us-diet/). The whole GMO-pesticide-paranoia thing seems pretty bunk as well: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3573730/. It seems that because the genetics for celiac disease are very much localized to regions with heavy historical consumption of wheat (middle east, north Africa, Europe), that there is/was some advantage to this genotype [http://www.sciencedirect.com/science/article/pii/S1590865814006008. and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4146836/ . It is postulated that this might be similar to sickle cell disease/sickle cell trait in malaria regions - having the gene is good and improves survival, at the high cost of some people developing the disease and dying/having very maladaptive traits. So for most of history, very few people with the advantageous celiac disease gene developed the disease, but now something is going on (hygiene hypothesis?) and that is no longer true in many populations. Unlike sickle cell trait, we don't know what the advantage to having the celiac disease genes are - but presumably there must be one for ~30% of Europeans to have it.
  10. Airborne gluten reactions

    Ah yes... dry beans. I am fortunate to live near a plant that only processes beans, pulses and rice (Western Rice Mills if you're on the west coast). I doubt that they test, but I would suspect that the biggest part of the risk with that type of food is in the plant where they pack them, as things like barley pearls and wheat berries are often sold as dried goods and would probably be done on the same lines. I would agree that dry beans could be problematic depending on source.
  11. Airborne gluten reactions

    Solid advice. Wish that more people would consider that this might be necessary for some and not entirely paranoid. Could very well be airborne, but most likely culprit is something you're eating. That said, baking, construction/open drywall, farms/animal food and bulk/flour aisles in grocery stores are legitimate worries. I was recently having frustrating problems with random but minor flare-ups, and have eliminated almost all packaged food (even gluten-free) for a bit. It has helped tremendously. I hope that perhaps my sensitivity levels will calm down in a few years, but not being itchy and scabby is worth almost any cumbersome restriction. I think for me the problem has largely been to do with the use of oats in many dedicated factories (even gluten-free oats make me very, very sick). I came to this when lodging a complaint/notifying a company that I'd had an issue with one of their GFCO certified products. I figured that mistakes could happen, and could not imagine anything else I'd eaten that day could be a culprit (had only eaten veggies/rice/meat) so I contacted them to report it. Their response made me quite sure that the lot my food came from was fine from a legal/GFCO gluten-free perspective, but revealed that they make all their gluten-free products on the same line - which include granolas, oat flour etc. When I investigated it a bit more, I realized that many of the gluten-free products that I suspected were causing me problems (but had no real basis for why) were all made by companies that also make lots of gluten-free oat products. Previously, I had only avoided gluten-free products that contained oats as an explicit ingredient, and had never considered that the residues from gluten-free oats could be problematic. Unfortunately, now that gluten-free oats have been legalized in Canada, it is very difficult to find companies that do not use them in some capacity, which is why I axed most of the processed gluten-free stuff. Presumably, because the oats are considered gluten-free, there is no reason to clean the line or employ any allergen food safety practices from the company's perspective. While this may not be a concern outside of those who are super sensitive, it might worth considering if you are still having problems or have a known issue with oats. At the very least, avoiding most processed gluten-free foods (breads/flours/pastas/baked goods) seems to have helped me a lot, even if minor contamination with oats is not the true culprit. I would vouch for mostly sticking with rice, dry beans, root veggies and fresh corn (from the cob) as complex carbohydrate sources for a bit, even though it's a bit inconvenient.
  12. Do I have dermatitis herpetiformis?

    I'm not sure that this is the original study I looked at, but it does describe the different antibodies found circulating in the blood that is specific to DH (anti-eTG, which is analogous to anti-tTG in regular celiac disease). At any rate, it seems that they can test for it, but many labs do not have the ability to do so or doctors do not know to ask for this lab test. So I suppose if one was very interested in a diagnosis, one could go to a research centre where they would likely have the ability to test for its presence! https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4435051/
  13. Do I have dermatitis herpetiformis?

    I have not been diagnosed with DH via biopsy, but my rash is mainly centered around my neck/jawline/ears and upper back/spine. Despite what many doctors have told me (as an excuse for refusing to consider DH), these are common locations for the rash. You said you get it on your hands and knees, so be sure to mention that as well as those are considered more "classic" locations. The other hallmark of DH is that it lasts a long time and leaves a purple stain on the skin after it has healed. For me, it takes weeks-months for the skin to heal - it's a constant cycle of picking-oozing-crusting-scabbing. I am quite pale (redhead) and when I get either very cold or very hot, you can basically see a time history of purple blotches from all the lesions I've had in the last year or so. If this seem like a familiar comment, be sure to mention that as it's a fairly specific feature of DH. I say this because I've been struggled for years to get a skin biopsy or any kind of real diagnosis on the rash and have mostly given up. If you have trouble finding a competent dermatologist like me, you might consider pursuing a traditional celiac diagnosis via blood test/endoscopy. Either way, you'll need to be strictly gluten-free. As an FYI, many with DH will test negative on the blood test as those with DH tend to make a slightly different antibody that is typically not tested for at most labs. Some doctors may be more or less aware of this. It might be worth it to be insistent that you get an intestinal biopsy done even if the blood test is negative.
  14. Sleep Apnea

    That's horrible about your son though. I suspect that the meds I was on didn't help my bone quality, but luckily I was not on them for most of the time I was growing. Fortunately, my asthma has always been on the less severe side so I've not really had too many scary moments.
  15. Sleep Apnea

    Well, I think it was more that my sleep apnea was a symptom of asthma, so controlling that got rid of the problem. Since most asthma inhalers act to relax the respiratory muscles and/or reduce mucus product and inflammation in the lungs, I'd guess that this strategy wouldn't work unless the sleep apnea was due to asthma/inflammation in the respiratory tract. Same principle for the GFD in celiacs with sleep apnea I would guess too. Though I don't remember having any formal testing done when I was 8, the part about me still not being able to breathe (due to panic) when I woke up would be pretty indicative of asthma. I now no longer need to use any inhalers, which is pretty exciting as the corticosteroid ones I was on have some gnarly long-term side effects (osteoporosis etc.).