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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 FREE Celiac.com 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 Celiac.com Store.

apprehensiveengineer

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  1. I'm going to guess the additive effect of a few months of mystery CC glutenings (since resolved), plus heavy training load. The last time I had my antibodies/iron checked in Feb 2016, both were good. Since diagnosis to that point, I'd been taking iron supplements only sporadically, but stopped altogether at that point as my ferritin was quite high (hemochromatosis runs in my family, so some concern about taking too much iron). Unfortunately, my DH is only speculative - I've seen a dermatologist in an attempt to get it biopsied/prescribed Dapsone, but she was convinced it had to be acne as it "did not look exactly like in her textbook." My protestations that this was because it she was looking at the remains of a rash that I'd picked the heck out of were sadly ignored. I do have a GI appointment coming up in a few weeks though.
  2. Ok... drum roll.... Cyclinglady wins! I am just anemic - ferritin is quite bad (10ng/mL), but hemoglobin still intact. Didn't get a look at the full results (Canada problems - doctors only give you the full print-off if you harass them for it), but everything else was apparently ok. I'll be downloading the full results for my file tomorrow from the lab. Not too worried about this, as I've been much more anemic in the past and managed to recover pretty quickly via supplementation. I'll be back for a second blood test in 6 weeks to check it's worked. So while this certainly answers the question of why I've been feeling so crappy for the last few months, the iodine thing still remains a bit of a mystery. I have been avoiding large hits of iodine for about a week and will probably keep at it for a few more to see what (if anything) happens. But for now... more steak and liver haha.
  3. I learned to drive a hard bargain after 3 years of useless doctors appointments in which I was told I was a hypochondriac/"stressed out student" Results are in, but all the medical receptionist said was that they were "non-urgent." Hard to say if that means there were no positive findings, or just that whatever they found isn't serious enough to kill me before my follow-up appointment later in the week.
  4. Ok - so bloods have been taken, now I await the results! Luckily the doctor I saw at the walk-in (grad student problems, ugh) was actually pretty good and I didn't have to fight him, which was a nice change for me. Got my TSH, antibodies, blood glucose, iron and a few other markers on the checklist. I've been gluten-free for a little over 2 years as an FYI. I was definitely a bit sloppy with CC in my first year (doctor did not offer me advice beyond "do not eat gluten"), but seemed to recover pretty well - felt pretty good after 2-3 months. Over the last 8 months or so, I've been feeling increasingly tired/terrible despite being ultra careful with my diet/CC. At first, I thought I might be mystery glutening myself, but at this point I can't think of how to be more cautious without resorting to some unreasonable bubble boy type situation. This leads me to believe that there might be something else wrong with me - but we'll see.
  5. Yeah, not too surprised that this is the way Canada has decided to do things. Canada has what I would describe as a paternalistic "for the greater good" approach to health/medicine/safety regulations, which is sometimes good (bike/motorcycle helmet laws, outright ban on sales of unpasteurized milk) and sometimes frustrating (this scenario). In a way, I kind of get it - there are a lot of misinformed people out there who get the heebie-jeebies when they see "scary" or "unnatural" words on food labels and assume they're bad to the detriment of their own (or their kids') health. That said this is certainly a pain for anyone who must limit iodine intake for medical reasons. If that turns out to be me, I will be very sad because I really like chips and they are a great emergency food (though some brands have low/no salt versions I guess).
  6. Thanks cyclinglady, I was hoping you'd respond! Although I'm hopeful that if it is indeed Hashimoto's that I might feel more like my old self, it's nice to have a realistic perspective on the matter. In distance running there are some notable cases of Olympians with Hashimoto's (see Kara Goucher), but I've also had teammates with the disease who had to quit the sport because they couldn't keep things under control. I have a cousin who as type I diabetes (same side of the family), so diabetes is definitely on my radar. I once had a blood test (pre-diagnosis) that showed above-normal blood sugar, but I have also read that this can occur in undiagnosed celiacs. I'll be adding that to my laundry list of blood reqs to be sure though With regard to my anemia issues, I haven't had any since I was 16 (so, 10 years ago). At this time I was undiagnosed and a vegetarian (very bad idea as it turns out!). I feel fairly confident my issue isn't anemia as I used to get my iron checked 3x per year (track team protocol, reviewed by sports med doctor who specializes in endurance athletes), and it was always good even when I was undiagnosed thanks to heavy supplementation/steak eating. My most recent post- gluten-free blood test had me with normal-high ferritin despite not taking any iron supplements (can't recall exact numbers, but the doctor was very shocked/impressed). I guess my main challenge for now will be to convince a doctor to test me for all these things. For whatever reason, most doctors are convinced that young, fit people cannot have real health problems.
  7. Hmm... I decided to dig a bit here, since that's a really good point which I hadn't thought about! I live in Canada and it turns out that here when salt is used as an ingredient there is no requirement to list iodide as a sub-ingredient or specify that the salt is iodized (link to Canada Food Inspection Agency rules here). Similar to the US, all of our table salt must contain iodide and this must be a listed ingredient. I use a non-iodized salt for my own cooking, and it is plastered with all sorts of warnings to that effect. So I guess in my neck of the woods, there's no way of knowing if the salt is iodized unless you call the company to ask. If I had to guess though, I would assume that if the product was made in Canada, the salt is probably iodized because it is so rare to find non-iodized salt here (I live in Vancouver, which is the Canadian epicentre of hippy-dippy alt foods tinfoil hat-ism and had a hard time finding it). I don't eat much processed foods, but those I do consume are all manufactured Canada. So, it is possible that my observed issues with processed foods containing lots of salt could be an iodine issue. Anyways... hopefully I'll figure it out. Feeling like garbage intermittently is getting real old haha.
  8. I've been feeling increasingly run-down over the past few months and suspect that I might be developing Hashimoto's. I have an aunt who has both celiac disease and Hashimoto's, who later developed thyroid cancer in her 30s - so I would say that my suspicion is extremely reasonable. Over the years I've had numerous blood tests were my TSH was measured (most recent ~16 months ago), but as I understand it these numbers can still be within the normal range in the early stages of the disease. I have no had any thyroid function tests of any kind since beginning to feel this way however, so it's possible that my TSH might be off too at this point. I'll be headed to the doctor this week to ask for a complete thyroid panel (TSH and antibodies), but I had a question about symptoms that I couldn't find a definitive answer to online. I've noticed that high iodine foods, in addition to worsening my DH, seem to make me feel acutely "worse" in sytemically. Until this week, I thought I might have been experiencing some trace/mystery glutening, but the more I think about it, I see that in the last few weeks all of the "bad" days I had were ones where I consumed more iodine than usual (chips, milk, fish, salted peanut butter etc.). I suppose it is possible that I am being low-level CC'd, but I have been extraordinarily careful for the past few months with my diet (following the Fasano diet with a few exceptions such as certified chips & nut butters) and kitchen precautions, and it doesn't seem to have made a huge difference. I am aware that in persons with thyroid disease that excess dietary iodine can cause problems, but couldn't find much on the interaction between this and celiac disease. Since iodine affects those with DH in the absence of thyroid disease, I was wondering if anyone could comment on their experience with this - does iodine make those with DH/but no thyroid problems feel systemically worse, or is this more likely indicative of me having Hashimoto's? This is more for my own curiosity as I think my family history/symptoms/major risk factors are enough that any competent doctor would test me for it (we'll see if my optimism carries though haha). The main symptoms I have been experiencing during these episodes in order of most to least apparent are: extreme fatigue/muscular weakness (I am an elite distance runner and go from 2hr-long running workouts to barely being able to function in the span of a few days, seemingly at random), difficulty breathing/feeling of something being in my throat, flaring of old DH spots/random hives, GI issues (no D, just weird BMs and some general discomfort). It seems these symptoms will last maybe a day or two and resolve pretty quickly assuming I don't continue consuming high iodine foods. I still however, feel generally run down even on my good days, so I'm talking trending from bleh-to-awful as opposed to good-to-bad. For reference, when I have been glutened definitively, I tend to experience more aggressive GI symptoms and also tend to feel very terrible for at least a week (and get DH lesions that take weeks/months to heal). Thoughts?
  9. Your spleen is on your left side, and is part of your lymphatic system (deals with fighting infections etc.). So not surprising or unreasonable for there to be some pain here due to swelling in response to gluten exposure. I also get this as well. When I first starting having severe symptoms, I actually thought I had mono because of this. Now I only get it if glutened. As a side tip, I'd say avoid any pizza from a restaurant, even if they proclaim it to be gluten-free. All of their toppings, sauces and surfaces are likely highly contaminated from making and preparing the regular pizza bases. Hope you feel better!
  10. @Jmg For sure. I think whatever one's consensus is on the validity of gluten causing problems for those diagnosed with NCGS, one has to admit that these people do have a real problem, even if it's one we don't fully understand. Articles like this do a disservice to that fact, which as you say is nuanced. There are also other autoimmune diseases that seem to respond to the GFD for reasons that we don't understand either. It's also problematic as from reading that one-line asterisk on celiac disease, people come down very hard on people who lack a formal diagnosis, not realizing that this is the majority of those with celiac disease. I'm in this camp and so I avoid providing the more nuanced "various doctors I have seen are about 99% sure that I have celiac disease, but I don't have a positive biopsy/blood because the gluten challenge would kill me." If I tell people that I am not taken seriously, despite the fact that many serious medical conditions are diagnosed purely on the basis of described symptoms and response to specific medications for that disease.
  11. I think the gripe with this sort of article is that it's not telling the right story. When you write anything, you have a choice about whose story you tell and the consequences of it. While such articles are factual in the sense that objectively, a GFD is worse than a similar regular one, the focus of these articles undermines the struggles of those who must be gluten-free while also not really giving any information that is likely to result in changed behaviour. All this sort of article does is justify the anti-gluten-free circlejerk. I think many of the journalists here think they're on the side of people with celiac disease because they're underlining that the fad diet is dumb/pointless/harmful/whatever. While this may be true, the message the reader remembers is this: the GFD is frivolous. It doesn't matter if there's a line in the article that says something about how the GFD is a medical necessity for those with celiac disease. People don't remember the asterisk in the article. All they remember is that the GFD is for idiots. What would be valuable and useful is discussing celiac disease - symptoms, longterm consequences etc. and how strict those with celiac disease must be with the GFD in the context of this research. This will do a better job of convincing people that the fad diet is dumb, but do so in a responsible way that doesn't undermine the real problems faced by those with celiac disease or other medical conditions. Plus, the increased awareness might make someone realize that they should get tested.
  12. Err... don't know what happened to this thread in my absence, but thought I'd add some input that might be helpful. I'd been having some weird low-level CC issues for the last few weeks and couldn't figure out what it was - I eat very conservatively (only eat certified products or fresh meat/produce/dairy) and it was driving me crazy! I saw this thread and thought about it a bit and realized that things seemed to have gotten worse around the time of my last coffee ground purchase, where I'd bought a different brand than I'd been using previously. Anyways, I switched to a fancier brand and things cleared up immediately. If anyone should come across this, the brand apparently causing issue for me was President's Choice. This is a store brand for the Loblaws chain in Canada, so probably not worth worrying about for most. I've not yet had time to contact them about this, but this brand does also offer a number of flavoured coffee grounds (used to buy these pre-gluten-free), so there is some CC potential there assuming they process these products on the same line. I guess I will be sticking with whole bean coffee or smaller/snobbier brands that don't do flavoured stuff for the foreseeable future.
  13. I would clarify that I am not attacking the content of the studies or calling them fake. Science is not black and white and relies upon critical appraisal to achieve a consensus on a topic. A study can "do the science right" but ask the wrong question or not answer it in the best way possible. If there is a weakness in the current body of work, it is important that is it pointed out for the sake of consumers (us) and so that other scientists may address these weaknesses. And I think having only one research group test a specific consumer product is a weakness regardless of how well it is done. I am not an immunologist and do not know the field well enough to be able to make comments on the quality of the actual science itself. My concerns were elsewhere. The only assumption I made above was that they were funded - everything else is taken from their website, or a description of how relevant legal framework applies to these statements. They describe their product as a "dietary supplement" which is "not a cure or treatment for celiac disease." Nowhere else on their front page does the term celiac appear (in reference to their product) and the purpose of their product is kept very vague (but refers to eating cake and has a picture of a pretzel, insinuating that their product is not just for CC risks). Choosing to classify as a supplement means one of three things either a) they could not provide sufficient evidence that their product is at least as effective as the GFD or b ) they didn't want to deal with the FDA regulatory process because it's expensive and time-consuming or c) they thought that by making their product a supplement they might make it more accessible (and as a result turn a much higher profit). Or perhaps all of the above. I cannot say for certain what their decision-making process was or if it is effective (if b or c, it would very well be) from this. I am not a fan of the product because as a scientist myself, I think there are too many red flags. Some people may disagree with me or believe that it could be worth it and that is fine. It is however important for it to be out there so that people can make an informed decision for themselves and what risks they think are acceptable. The supplements industry in general is notorious for misleading consumers who don't understand the crucial difference between a drug and a supplement, and making their product seem more than it is. Most often this is mostly harmless (just causes people to waste their money), but in this case there is a potential for harm, so I feel my criticism is justified... especially given the content on their website, which isn't giving much emphasis to "just use this for CC" unless you read the very fine print.
  14. I responded to this topic on Reddit, but I'll do so again here: I think it's worth pointing out that all the research links listed as from the same research group, and that only one study involved actual celiac patients. This is very weak, even if the studies are fine, especially in a disease that is not well-understood (making patient population testing extra important!). There is also no conflict of interest/funding statement, but I'd guess that the research might have been funded by the company - otherwise I can't see why they'd do so many on this particular product. This is not in of itself terrible (research money has to come from somewhere), but it's definitely important to realize that funded studies may not fully release all information in the publication, as per the company's request. That this product is being marketed as a "dietary supplement" as opposed to a drug is also pretty telling. Basically, to be classed as a drug by the FDA it has to work and be safe and you have to prove it via clinical studies. If it's just safe (ingredients proven to be ok) but you can't prove it does anything, you can try to sell it as a supplement. This to me is a bit like the Nima, which is essentially classed as a toy because it does not actually work well enough to be a medical device. Maybe it kind of helps, but clearly not well enough to be sold as a drug. I can understand why this product might be exciting for those who struggle with being strict with the diet or who might be occasionally put in situations where being safe is difficult. However I find it frustrating to some extent as it seems that the celiac/gluten-free community is so willing to take low-ball payouts so to speak. I think if celiacs as a whole HTFU'd and presented a more unified, hardline approach to the GFD, things would be better for everyone as there would be less miscommunication about what constitutes gluten-free and how to avoid CC. This is alas, a pipe dream, but I'm putting it out there anyways.
  15. I have been super anemic (ferritin 0, hemoglobin 9 g/dL) and also experience dizziness as a result of gluten consumption. The feelings of dizziness and vertigo are pretty similar in my experience, but when I was anemic blackouts due to vertigo were more common. That said, I was undiagnosed at the time of being very anemic, so it's difficult to delineate the response I guess. It's usually one of the first signs that something is amiss for me - if it's a low level CC, my stomach problems aren't usually bad enough to be obviously caused by gluten, but if I start feeling dizzy, then I know I messed up. The feeling ranges from feeling I'm kind of floating/in some bizarre virtual reality to the spins (which sometimes leads to vomiting if I'm unlucky). I have found that riding in cars or moving around a lot makes it worse (or makes me notice it more). Caveat here is that I've not seen a doctor about this. Like many neurological issues that are transient, it's difficult to get much if you aren't presenting with symptoms in the office (I've worked with specialists in this area on work matters and this is a huge problem in general). Plus, I get the sense that most doctors I've seen wouldn't think this problem was potentially related to celiac, since many of my more well-known non-GI symptoms (DH-like skin rash) have been dismissed before. Good on you for trying though.