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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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apprehensiveengineer last won the day on October 14

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  1. !!! A few months ago, I had poor experience with GFCO certified corn chips that are made by Nature's Path; I was eating them absent-mindedly and noticed an "off" taste that was definitely not corn. I took a look at the chip, and it wasn't as yellow as the other ones. Spat it out and rinsed my mouth as much as possible. I tried to shrug it off (maybe I was being paranoid and imagined it!), but I did get a bit sick later. All I'd eaten that day was fresh veggies, eggs and rice, which I was pretty sure were ok. Anyways, I filed a complaint to them, which is not normally something I do as I suspect that I react to stuff under 20 ppm/don't want to cause alarm if I am not certain what product it was that made me sick. As it turned out, my specific bag had been made in the allergen free facility/line (they also make gluten-free stuff on shared lines that they "clean carefully")... however it was revealed by the rep I emailed that they make many of their gluten-free products on the same line. I cannot tolerate oats of any kind, and most of Nature's Path's products are cereals that contain "gluten-free" oats. Previously, I had been totally unaware that Nature's Path even produced the chips I was eating (they bought out a smaller company that used to make the chips). Anyways, I stopped buying them full stop after this... very unimpressed. Not really a fan of the "we clean our non-gluten-free dedicated lines very carefully" thing (especially coming from a company that primarily produces cereal!), but also pretty unimpressed that the rep I spoke to "lay-splained" celiac disease to me when I asked an informed, clear question. I get it, it's not illegal to call oats gluten-free, but not all celiacs are able to tolerate them, so it's irresponsible to refuse to be open about their use in your products/facilities. Anyways... this company's attitude makes me a bit nervous to say the least. You didn't say what cereal you were eating originally, but you might consider the oats thing. I know they make some cereals that are oat-free, but due to the issue I described above, they might be problematic if you're oat sensitive. I personally used to eat those oat-free cereals but noticed that they seemed to bother me (didn't know why, thought it might be some other ingredient) and stopped eating them long ago.
  2. Airborne gluten?

    If you are still worried you can also ask that the dry ingredients be mixed/poured outside (eg. on a deck, balcony etc.) and only be brought inside once combined with the wet ingredients. I believe someone else on the board once posted this as a suggestion, and I took it up to avoid roommate mutiny. Before I insisted on this, I would always get sick when roommates baked, even if I wasn't there at the time or hid in my room during. It might be however, that your current method is fine for you though - not a lot of studies in this area to prove anything either way.
  3. I worked briefly as a server, and I would vouch for the fact that glasses, plates and utensils are not washed carefully in most places, even nice ones, even if they have a dishwasher. The place I worked at had a sort-of dishwasher for the glassware - it was basically a 2 minute bleach/steam sprinkler cycle. Lipstick on wine glasses would still be on there at the end, to give you an idea of how well it cleaned particulate matter. Anyone thinking that thing was getting particulate matter off at a ppm level would be dreaming. In addition to this, servers would wipe off glassware that came out of the "dishwasher" with linen/rags that get tossed around/dumped on counters by the bar (covered in beer, used to clean up spills). Servers also don't wash their hands very often and handle food a lot - bread basket, cleaning off plates etc. Many coffee places also often dump their coffeemaker baskets in the sinks, which are often filled with crumbs from baked goods and sandwich prep. I'll eat my hat if those things get any more than a rinse before they go back in rotation for a new batch. Similarly, coffee cups are sometimes stored below food prep areas or shelving. All of this might sound paranoid, but if you're super sensitive these things could make you sick. They did for me. I wasn't thinking about these things until I kept getting sick, even when I was ordering only wine or coffee (even in my own thermos!). I have since opted to only get bottled/canned beverages from bars/restaurants unless it's slow enough that I can ask for a glass to be rewashed carefully for me. When traveling, I bring my own ground coffee and use a cone/paper filter to make drip coffee.
  4. I"m Soy free, getting there was hard.

    Have you been tested formally for a soy allergy by an allergist? I am allergic to soy (+ via skin prick), but don't generally have a problem unless I ingest it or have it put directly on my skin. Soy allergies tend not to be anaphylactic. To be clear I'm not doubting your experience - it's quite possible that your allergy is more severe than mine. But... I found that initially, when I was still healing that I had a hard time telling the difference between a glutening and a soy exposure, because there is some overlap in my symptoms and my immune system was pretty out of control/erratic, making association between events and symptoms very difficult. Now it is more clear that many of the events I thought might be soy-related were probably more celiac-related, as with time the reactions became more delineated. I would honestly consider that first, as what you seem to be describing in terms of symptoms seems pretty celiac-related, not allergy-related. I'll certainly sympathize that avoiding soy is quite difficult - the amount it gets pushed in America is absurd, considering that it is a top 8 allergen. I don't think my diet would change much if I was somehow magically able to stop being celiac because nearly all processed foods, personal care products and medications (even many allergy meds!) contain soy. Although it is probably not entirely necessary as these ingredients should not contain soy proteins, I do choose to avoid soy lecithin, unspecified tocopherol and natural flavours in what I ingest or put on my skin. That said, in the case of a handshake, you're looking at a trace of a trace at worst... I might consider that perhaps there are other more likely sources for your problems. I had to get rid of all processed food before I started noticing big improvements, and I'm very certain this had more to do with trace amounts of gluten (at a level that is tolerated by most celiacs, but apparently not me) than it did with soy. You do have my deepest sympathies here - I certainly remember being super, super sick, having no idea what was causing it, feeling crazy and feeling like everything was out to get me. As an aside, if you're looking for gloves, you can get the powder-free, nitrile kind as well (I work at a hospital, and this is the only kind we use due to allergy issues). Hope things get better! Edit: if you're having problems with perfumes/fragrances, you might also have an allergy to that. My mother does, and she gets headaches/nausea/vomiting from being near people who wear heavy perfume/cologne, or in environments featuring scented candles etc. She is also allergic to soy, amongst many other things. I do not seem to have a problem with fragrances though... so her issues are likely unrelated to soy specifically.
  5. This sounds a bit like what happened to me... accidentally discovered that gluten was the source of my various/severe health issues while doing an allergy elimination diet. Unfortunately, none of the doctors I was seeing at the time thought to test me for celiac before suggesting I do this, despite my having a pretty classic set of symptoms/medical history. Sigh. I personally chose to try to pursue a formal diagnosis but without doing the gluten challenge. My symptoms are very debilitating/disruptive, so I would worry that I would not be able to work FT if I did the gluten challenge. Some people do manage to do it though. In the end, my results were negative, but because I was gluten-free at the time of both the biopsy and blood test, this is inconclusive. I had the genetic screening done as well, which confirmed that I do have the genetic ability to have celiac disease (but so do a lot of people). So in the end, I didn't get any new information, nor did anything really change - it seems unlikely that what's wrong with me is something other than celiac/DH, but this can't be proven due to current limitations in diagnostics. I will keep living my life as if I do have celiac, because I don't want to get cancer/other long-term complications due to a false negative. I can't tell you if it's worth it to do the gluten challenge because that's more of a personal thing, but I think it is worth it to try to pursue a formal diagnosis even if you decide not to. You never know - there might still be enough intestinal damage for a positive. I did have to push a little bit, but once I got referred to a GI things were fine. Good luck!
  6. Halloween

    It's because Smarties as we know them in Canada do not exist because it's a British thing... closest thing the US has is M&Ms. In America, Smarties are Rockets (the chalky pill-like candy). I got had by this one on my first Halloween because I forgot this . Should have known as I lived in the US for a bit, but it slipped my mind and I didn't read the ingredient list.
  7. 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.
  8. 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.
  9. 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.
  10. 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
  11. 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
  12. 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.
  13. 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!
  14. 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.
  15. 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.