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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About thegreatkatsby

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  • Birthday 01/27/1983

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  • Location Holyoke, MA

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  1. It's definitely the coffee for me... decaf or not. The only kinds of coffee I can drink now and then are the fluffy ones with lots of milk/cream... and they have to be espresso drinks, not drip brewed. I don't know why the espresso is usually ok when the regular kind of coffee isn't... maybe it's the way it's extracted? Perhaps the high pressure has some kind of effect? That doesn't seem to make sense, because espresso is more highly concentrated than regular coffee... but I have had regular coffee in a mug 50/50 with milk, and it gave me gastro problems whereas the espresso drinks typically don't, so it's hard to imagine it's just the milk protecting me. (Note: sometimes the espresso drinks do make me feel sick, but not like regular coffee, which is guaranteed to make me feel sick). I think my tolerance of espresso is decreasing though. :/
  2. Thanks! We had to read it in high school, many moons ago, and one of my classmates nicknamed me. :)

  3. Clever name!!:>)--The Great Gatsby is one of my favorite novels.:>)

  4. Sort of... once you finally figure out what all the problems are/were.
  5. Something I just learned today that made me think of this topic again... apparently there is a new test out from Cyrex Labs that looks for cross-reactive foods in celiac and gluten intolerance people (in cross-reactivity the body mistakes another food for gluten and reacts accordingly.). Coffee is one of the top offenders for this. I first read about it in a forum, but I googled around and found a page with this on it: "Coffee is surprisingly cross-reactive with gluten However Cyrex researchers were surprised to find coffee has the highest rate of cross-reaction with gluten. In other words, some people
  6. I stopped being able to drink regular coffee years ago... way before I was diagnosed as a celiac in January of this year. I don't know why I can't tolerate it, but it is upsetting. For some reason though, I can usually tolerate coffee drinks made with a lot of milk (i.e. lattes, frappacinos, etc). I don't know if the milk helps coat the stomach, or prevent against harm done by the coffee, but it is the exception to the "no coffee" rule for me. The two things I suspect may be part of the problem are the caffeine and the oil (from the coffee beans--I'm not sure what else to call it? extract?).
  7. I'm glad someone brought this topic up again. I'm desperately in need to feedback and advice. I was diagnosed on January 25th of this year, and have tried to remain gluten-free since then. With the exception of one major screw-up (I didn't realize tums had gluten in them and was taking them for several days about two weeks ago before I realized they were making me so sick again), I have been pretty vigilant about avoiding gluten. The first two weeks of gluten-free-ness were euphoric: it was the first time in my life I didn't have daily headaches. Eventually my neurological symptoms (brain fog, anxiety, depression, mood swings, light sensitivity, smell sensitivity, numbness in limbs, etc etc etc) and joint/muscle/bone pain started lifting, and for the most part, with the exception of the tums episode, they have been a lot better. However, my gastro symptoms are still bad, if not worse than before I went gluten-free (it's hard to know if the pain was always there but masked by the greater pain/disorientation of the neuro symptoms, or if it started developing after going gluten-free--I always blamed stomach pain and diarrhea on my migraines and neurological symptoms, or stress). Furthermore, my fatigue is unbearable, especially in the mornings when I find it next to impossible to wake up and get moving. Every morning I wake up so disoriented, feeling uncomfortably bloated and like I have been kicked in the stomach/ribs. Sometimes I fall back asleep while I'm hitting the snooze button... sometimes I sleep through the alarms (two of them!). The stomach pain normally recedes by the afternoon (sometimes to be replaced with a small headache), but the pain and discomfort in the mornings is nearly unbearable. It's causing problems at work, where I am 1-2 hours late every day. Thankfully my supervisor has tried to be understanding, but it's clear that her understanding is wearing thin. The most noticeable symptoms that returned quickly when I was taking the tums were the neurological ones (headache, light sensitivity, hyper-smell, brain fog, irritability, mood swings, etc) and the body/bone/joint aches and pain. Perhaps the fatigue/morning symptoms worsened during that time as well, but they've been consistently bad for months, so it's hard to evaluate how the glutening might have affected them. The neuro symptoms have greatly receded again (it's been two weeks since the tums), but the morning/stomach issue is still bad every day. It's been about four and a half months since I was diagnosed... Although I'm eternally grateful that the neurological symptoms have been significantly reduced, I'm kind of disappointed that I'm not getting better as quickly as I had hoped. I thought my energy and well-being would be much more intact by now, but it seems like the fatigue will never end. The gastro symptoms make me wonder if I have another food problem, or if my tract may have something else wrong with it--although I haven't noticed any significant changes depending on the food I eat (i.e. no specific reaction to dairy or soy that I am aware of... I've been avoiding corn to some extent and I know eggs, by themselves, cause some kind of gallbladder pain so I've been avoiding them too). Has anyone else had a similar experience? Just for reference, my AGA was 321 for IgG (need 30 for a positive), 73 for my IgA (need 30 for a positive), and >100 for my tTG (need 10 for a positive). I'm 28 years old, and eat "ok", although with my busy schedule I do have to rely on processed foods more than I should. I've had migraines and neurological symptoms since I was an early teen, with the apex of all of my symptoms reaching a breaking point at the end of last year (leading to diagnosis FINALLY--yay!). I'm also an overweight celiac, versus a wasting-away celiac. My blood tests for glucose last year showed me a little high, but within the normal range. I also tested extremely low for vitamin D in January, which I have since been working on supplementing. I have problems with insomnia, made worse since going gluten-free, but was recently given medication to help with that (though it doesn't help the morning problems). After the blood test, my primary care doctor and neurologist both said that a biopsy was not needed given the significance of my results. I'm wondering if I should go back to one of them (neither seems to be particularly well informed about celiac, although they know what it is and it was the neurologist who initially suggested I get tested for it), ask to see a gastroenterologist, or whether I should consider asking if I can go to see a celiac specialist in Boston? Any thoughts? About symptoms? Similar experiences? Revelations? Commiseration? I'm tough as nails and having a hard time being a sickly creature.
  8. Working Out

    I don't know how much these symptoms are related to celiac or not--but after an intense workout (i.e. more than just a walk around the block or 30 minutes on the elliptical) I have noticed the following things: my whole body feels like it's swelling -- including my legs and feet (which puff up), and my abdomen feels uncomfortably swollen lack of flexibility / stiffness extreme fatigue surprise diarrhea & stomach cramps(as if I drank plumbing fluid that "cleared my pipes") brain fog depression / weird dark thoughts/feelings severe soreness the next day (and even more so the day after that... i.e. 2 days later) I think there were other things--but I can't remember everything because it has been a while since I've done anything intense (obviously it's not something that results in much joy). Plus I think I retained more water and even GAINED weight from exercising (even though that doesn't make any sense). I was diagnosed celiac in late January and have been gluten-free since then. I don't think my body has healed enough yet for me to see any major differences, but I'm hoping to see changes once I do attempt to start exercising and doing sports again. I also used to have what I thought were "panic attacks" during sports practices... an allergist tested me for everything and found I was allergic to nothing, so he diagnosed me as having "cholinergic urticaria", which is more or less a condition where the patient responds to heat/exercise/over-exertion with an allergic reaction (most noticeably, hives). Now I'm wondering if this reaction to overexertion could be related to celiac. Hopefully, time will tell.
  9. Gluten Free Cookbooks

    I went to Borders recently and was actually impressed that they had about 20+ gluten-free cookbooks in-stock in the store (they were in the health/medical section though--NOT the cookbooks section).
  10. eatmeat4good, you have described the way I have felt off and on for more than 10 years. Sometimes I feel like I'm "inside my head"... like I'm not really there... like I"m watching a movie of my life, or that I'm sitting in a seat in my head while things just happen and I simultaneously feel like I'm there and not. I've tried to describe this to people, but most don't "get" it. I assumed it was related to my migraines because... well, when you can't explain something you blame it on something that you can't explain (like that makes any sense). It's such a bummer to know that I could have made thing better years ago if I had only known... but at the same time, I'll take the view that what doesn't kill us makes us stronger... or at least deeper, maybe? The biggest regret I have is in remembrance of all the opportunities I missed because I was so tired/sick/antisocial to pursue them. Not the big opportunities--it would be hard to keep me from keepin' on keepin' on... but the little ones. Not returning phone calls. Declining outings with friends. Reluctance to travel because of the fear that I would feel sick in a place where I wouldn't know where to run to if I got too tired/sick/miserable.
  11. I'm confused about the weight gain, because I'm significantly overweight and I always thought there was something fishy about it (because even though I don't exercise regularly, i'm a very "on the go" type and don't particularly binge eat or anything that would explain rapid weight gain--plus, after 3.5 years of skating 2-3 times a week for roller derby and GAINING weight... it was confusing). I've seen theories regarding "starvation mode" and the body holding onto calories due to malnutrition... but I'd be psyched if researchers could figure out the celiac/obesity connection.
  12. I think the heightened sense of smell is a symptom of, or a form of, a migraine. The worse my migraine symptoms get, the worse my sensitivity to everything gets... but I've dealt with the light/noise sensitivities for so long that I've adapted to dealing with them. Although I have an above-average sense of smell on a GOOD day... the extreme heightened sense of smell was something I typically only got in the days leading up to a migraine, or the days recovering from a migraine. Towards the end of 2010, the extreme heightened sense of smell never went away... and it was too hard to adapt. Everything made me feel sick and gave me a headache. I could smell everyone's breath, their shampoo, their feet, the detergent on their clothes... I could even tell when women were menstruating. It got to a point where I was in tears about it, so I called my PCP which led to eventual testing for and diagnosis of celiac by a neurologist who was looking for the migraine trigger (journaling hadn't revealed any clear patterns). So, for me at least, the connection between celiac is there, albeit as a symptom/condition of a symptom/condition of the celiac reaction. Is there a name for that? Secondary symptom? It can be confusing. The other thing I'm noticing now that I'm gluten-free is what I suspect are gallbladder problems. I always assumed my nausea was related to the headaches and migraine symptoms, but now that those have eased up, the stomach/abdominal problems are becoming more apparent. I recently posted in another topic about my hypothesis regarding a connection between a reaction to eggs and celiac (you can check it out here if you're interested). As a side note--this may not be relevant but I think it's worth mentioning--my brother is hearing impaired. He had not been tested for gluten sensitivity.
  13. Eggs

    In my case, I'm eating an omelet ordered off a gluten-free menu in a restaurant that is conscious about food allergies.
  14. Glutenings And Weight Gain

    I think it's interesting you say this--because I have suspicions about a potential link being glutened and weight gain. I know part of it is the extreme bloat and water retention... and then the lethargy following it (i.e. not moving enough)... but then maybe there's a metabolic reaction as well that slows down the digestive system in order to hold onto calories? Maybe the damage in the intestine causes the body to jump into "low calorie" or "starvation" mode?
  15. I can tell you my diagnosis came as a surprise, because one of my closest friends is gluten intolerant and my symptoms have been so different! The manifestation that resulted in diagnosis was an extremely heightened sense of smell. It was so extreme that I could smell things that no one should have to smell (I'll leave it at that), as well as grossly exaggerated other smells (perfumes, body odor, chemicals, etc). I figured it had something to do with my migraines, but couldn't figure out why everything was getting so bad. My PCP was perplexed, and sent me to a neurologist who suggested testing for gluten sensitivity. You can imagine my surprise when she told me that my blood test results were the highest ones she had ever seen as a doctor! [symptoms/etc I believe are tied to my experience with celiac include:] fatigue insomnia trouble getting up in the morning foggy brain anxiety mood swings (anger, depression, and other irrational fun times) anemia (which might be related to trouble getting up in the morning) low vitamin D HEADACHES (daily headaches and migraines) neurological symptoms including: visual disturbances, light sensitivity, noise sensitivity, smell sensitivity, touch sensitivity stiff neck and shoulders gallbladder attacks (not confirmed, but I'm pretty confident that's what they were) pain in lower legs (orthopedic could NOT figure out why I was in so much pain when I exercised... nothing showed up on x-rays or bone scan or during physical) dry skin (including a lovely flaky scalp) alcohol intolerance attention deficit disorder eczema bloating abdominal pain gurgling stomach diarrhea [symptoms/etc that *might* be related to celiac:] heat/exercise intolerance (I think this is a histamine problem that I haven't figured out yet--on zyrtec daily to deal with it) I'm sure I'm forgetting plenty of things... but these are the ones I could think of right now. The neurological problems were so bad that they greatly outweighed the gastro symptoms... to the point that I didn't think I had any gastro symptoms. As I have now been without a major headache since the diagnosis and subsequent switch to a gluten-free diet, I have begun to really notice how many awful things are happening inside of me. I also now acknowledge that the things I chalked up to "food poisoning", "too tired", "physiological manifestation of stress", "didn't settle right", etc, were more likely celiac symptoms and not the hundreds of excuses I made up to try to explain to myself what was happening to me. I'm still waiting for my sense of smell to back off... it has a little bit, but I'm still annoyed by it. Time will tell.