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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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About Chantalle

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  1. Just wondering - my blood tests were negative and it just ocurred to me that I read somewhere about having to be ingesting gluten for blood test results to be accurate. Does this mean that one has to NOT be gluten-free for test results to be accurate, meaning you must be eating it normally or does it have something to do with fasting and not fasting for blood tests? I was being tested for lactose intolerance which requires a minimum 12 hour fast and at the same time I was tested for celiac disease. Would the fasting make a difference with the celiac results? Thanks for you help, Chantalle
  2. I read a recent study on ibs and celiac disease as well. Not sure if it's the same one you read. I'm in the process of being checked for celiac disease. Not sure I have it. Blood tests negative and a 14 month wait to see gastro. May do the enterolab test. Diagnosed with ibs at age 3 (I'm 42 now). I baffled the doctors apparently. I'd be in agony and fall to the floor - terrifying my family of course. After 1 week in hospital my parents were given the Nervous Stomach label. Years after, it of course became known as Spastic Colon and then IBS. Of course, I may still have IBS. I may not even have celiac disease. But I've taken it upon myself to find out more since my doctor doesn't think there is anything wrong with me (!!). I do think that those people diagnosed with IBS, especially for as many years as so many of us, should take it upon themselves to delve further and look at what else there might be. There isn't much one can do with ibs. Cut out coffee, chocolate, etc. Never worked for me. Chantalle
  3. Angel - thank you so much for putting up that list. I can't believe how many active symptoms there actually are - and also the fact that somebody can be sick with celiac and not have what most doctors believe to be the "classic" symptoms. With my doctor it's the fact I'm not "wasting". I fall into many of those symptoms - the one that surprised me was the muscle one - my lower left leg has been "numb" for more than 2 years (although I DO have herniated discs so this really could be the culprit) plus the fact that I experienced tingling and pain in my elbows, swelling, etc. in my forearms and hands. Went for a test at the hospital with a neurologist and he said I didn't have carpal tunnel syndrome - but it was so bad. I seemed to resolve it through wearing wrist things at night. Anyway, thanks again - I'm going to order the test from Enterolab. Chantalle
  4. Enterolab

    Hi Kaylee - I keep screwing up on here and adding to end of posts instead of starting a new topic - hope I have it right this time... Was wondering if you told your doctor (or showed him the results) from Enterolab and what his response was. Did he accept the tests as valid? Was there any way to have it covered on our insurance? Also - what made you take that route anyway? I'm just wondering. It's interesting to hear a perspective from another Canadian as we are dealing in a different way with our medical community. Chantalle
  5. Enterolab

    Hi all - I just sent an enquiry to Enterolabs to determine whether or not they will do testing for Canadian residents. I also enquired as to whether the Gluten Sensitivity test is enough - it's the $99.00 one. Don't forget - that $99.00 equates to about $150.00 Cdn.!! And to put it bluntly, we're not used to paying for medical care here! Well, really that's not quite true! Because I'm self-employed and my husband's company is small and doesn't offer medical coverage, we pay our own. We pay provincial medical (about $200/2 months I think). This covers all doctor visits, surgery, hospital stays, births, etc. Then there's the private medical we pay for which just went up to $311.00 per month. That covers dental (80%), prescriptions (80%), and certain amounts per year for things like massage therapy, chiropractic, podiatrist, etc. It also contains a small life insurance plan. Believe me, when you work for a company here you sure need to consider how lucky you are if they cover all the medical/dental! I always had that prior to our move to this province as I always worked for big companies in Vancouver. Any comments regarding which test I should do is very much appreciated. I'm not sure I understand the differences between them all. Thanks, Chantalle
  6. Thank you NitaB and Kalo for all your help...this site sure helps me feel like I'm not crazy! IBS and it's symptoms have a tendency to make those who suffer feel as though they are hypochondriacs. That's sure how I felt (feel) when I have ever talked about it to my doctor(s). Which is why I have only mentioned it twice since I've been an adult on my own (my mom may have talked to doctors about it when I was young, I don't know). I'm not too sure what I'll do. I could wait to see the specialist (in 14 mos.!), or e-mail Enterolabs and see if they will test samples from Canada. One thing I have to note - which really became apparent to me just today - I've been must worse for the past 6 weeks than I've ever really been. I've always suffered but this time around it is so bad for SO LONG. It seems like this just leapt out of nowhere in a way. Other than the bowel disorders and gas, I could feel pretty much o.k. before. I get these really sick feelings now that last a long time, and the gas and diarrhea is worse than ever. Is it possible that I have had IBS all along and lactose intolerance, but both have gotten worse? I guess the only way to really answer all this is to get that test done through Enterolabs. I'll check their site tomorrow. Once again, thank you - and I'll be watching for those results of yours! Chantalle
  7. Well, I feel a bit sad right now! Reading all this helps me a lot. My blood test was negative too (I'd like to ask her for a copy of it). It is nice to read that others feel as I did. I felt like she was angry at me for being so down that the test was negative! I began to feel like I was nuts myself. Now at least I know that there are others that feel this way. To me, it would have been an answer to all this awful pain, diarrhea, gas, etc. I really hate it. She tested me for lactose intolerance and I'm positive for that. I'm struggling with that. If I even have a cookie with whey powder in it I suffer. I took 2 Lactaid pills to see if that would be enough and it wasn't maybe. I don't know - I'm suffering right now as a matter of fact. Thing is, I took 2 Lactaid pills and only had one small cookie and still feel awful. Thought it would take more than that to make me sick. Anyway, she referred me to a gastroenterologist and the wait is 14 months! That's because they have ruled it as "routine" based on the fact my bloodwork for celiac came back negative (she really didn't believe I have it and said so - told me I don't have the classic symptoms! My feeling on that is that she would obviously need to suffer all this since 3 yrs. old, as I have, to really know how I feel! She signed it off, meaning she agrees there is no hurry to get me in to see the gastro. I felt really dejected... I will have to think about getting this test done at Enterolabs, however I'm in Canada and don't know if my doctor would believe the results if they were positive anyway. Doesn't really matter I guess, if she does or not, as I could still go gluten-free. The advantage to having a firm diagnosis of celiac is that in Canada we can get a tax right-off for all gluten-free food bought under the disability act. It would certainly make things easier economically if that were so! Well - guess I really wanted to comment on the posts here that show similar results as mine. Maybe once I get the dairy thing under control, I'll feel better and it won't be gluten afterall! Chantalle
  8. Enterolab

    Hi all - I checked out the site for Enterolab and the price list. I think the full test with gene test is something in the range of $350.00 - that would be American so being I'm Canadian and our dollar is worth MUCH less than yours right now (!!!), that would be big bucks for me. I called the local chapter for celiac association and the woman I talked to told me she isn't aware of stool tests available here although she knows that there were some looking for funding from the government to do it. I told her about Dr.Fine and Enterolab and she was interested to find out about that. She also told me that even though my bloodwork was negative, that when I see the gastroenterologist, I should be sure to get the proper bloodwork done again and he may do a biopsy as well. Also told me to make sure I DO NOT change my diet right now and go gluten free as it will mess up any tests. She says that since my son has severe acid reflux disease since age 10, that he should be getting bloodwork done at least too. I still haven't heard from the gastro's office yet and no doubt I won't get in until sometime in the summer (takes forever to see specialists). In the meantime I'm watching my lactose and taking lactaid to see if symptoms remain after I have the lactose intolerance in check. Chantalle
  9. I got my results today and my bloodwork for celiac came back negative. Now, I should be elated right? I'm not unhappy about it, however, I still feel ill and in a way it would have been an answer to all the questions, you know what I mean? My neighbor who has just found out recently she has celiac felt that way. She said, yes, it was a pain to deal with the eating, but she just felt relief because she now knew what the problem was. Her two sisters were tested as well after she found out she had it. One sister had results that were borderline, was re-tested and it came back negative. But this sister has all the same symptoms as my neighbor. ???? My neighbor feels that she should be looked at further. My doctor kind of quietly said that she didn't really think I had the symptoms for celiac and I think she was referring to the fact that I'm not underweight. In the end she gave me samples of pills to treat IBS and a referral to see a gastroenterologist. Mainly because I've had all these same symptoms since 3 yrs. old, not because she thinks I might have celiac. She did say that the specialist would decide if I was a candidate for a biopsy. However, I did test positive for lactose intolerance! She had decided to test me for that because my symptoms do sound like those of lactose intolerance. She said I wasn't off the charts or anything but that the results mean that it's like you can't be just "a little bit pregnant". Either you are or you aren't. I just can take pills prior to eating lactose and I'll be fine there. But the thing is, I don't ever drink milk and don't eat yogurt. I only eat cheese on occasion. So having these symptoms so often and so bad can't be from lactose to my way of thinking. Lisa - thanks for your understanding message. Depression is always hard to deal with. I take a very low dose anti-depressant because I have horrendous PMS and was suffering badly for 2 to 2-1/2 wks. per month! My husband just LOVES these pills! As do I! I couldn't go off them - my life did get so much better with them. I have a friend who takes two different kinds of anti-depressants at the same time. And I'm the one that made her go to her doctor - she didn't realize how bad she was - but I sure did. Her life is so much better now. I asked my doctor what tests she did for celiac btw. She told me, but I just don't know if it was for the 3 things normally tested as per the information on this site. Thanks for listening. I'm more determined than ever to find out what's wrong. I've decided to clean up my diet and make sure I'm lactose free. But I'm not going to go gluten-free yet. Although I think I will try it even if the specialist says I'm o.k. and don't have celiac. There has to be something irritating my bowel.... Long letter - sorry! I'm a super fast typer! Chantalle
  10. meant to post to you separately but new to this and screwed up!
  11. Celiacfreeman - I fogot about fatigue. I have that most of the time... It was nice to read your response and hear about how you thought you were "normal". The neighbor that suggested I check into whether I have celiac was talking to me about normal when it occurred to me that I probably don't know what "normal" is. Normal to me IS feeling like this all the time - which is not feeling good at all. How could this take me so long to really think about? I don't know if I have celiac yet - I'll get my blood test results tomorrow - but I do know that I must have something wrong. I've NEVER complained about it until now (well, once maybe - and it didn't go well as far as the reaction from my doctor at the time). I've been living this way for 39 yrs. - maybe that's why... I'm hard pressed to really, really know if I have felt normal. I think about it and I would likely have to say that there are times when I have felt pretty well. The bowel disorder was always present however. One thing sticks in my mind - camping with the family (as a child) and 3 solid weeks with extreme diarrhea and nobody else with even a bit of it. It was blamed on the water we were using - hmmm. Can only one person have Beaver Fever and about 10 others not get it? That was only one incident. Well, thanks for your response. Interesting to compare with others to see the similarities. Chantalle
  12. The diarrhea has to be the most intrusive of the symptoms I get. However, the opposite has been common for me for years. Bloating and gas is second in the most annoying dept. When I get pain, which for years I believed to be from IBS, (and still could be) that's pretty bad. I also get a sick feeling in my head, headaches and a kind of spacey feeling, especially after I eat. Were any of you ever diagnosed with depression? I was, but there was a very, very good reason for it at the time so hard to say it is related. Just wanted to get an idea about what the normal symptoms are; or general symptoms across the board I guess. Chantalle
  13. Hi - just wondering why it seems that blood tests for celiac are inconclusive? And can I request a stool panel test via my doc? I'm in Canada and getting tests done isn't an issue if you have a doctor willing to work to find out what's wrong with you (luckily mine is!). I had blood tests done today and she (doctor) requested lactose intolerance, glucose and the bloodwork for celiac. Does anyone know why she would have requested the lactose intolerance? Is it commonly connected to celiac? She asked me if I'm lactose intolerant and I'm not sure - I don't like milk, can't take calcium (tried 3 different kinds over 4 mos. and was sick every day - I believe some people can't take minerals - calcium being a mineral). I do like cheese, and eat yogurt sometimes. Anyway, still have diarrhea and I'm truly exhausted and feeling sick. Bloodwork took 2.5 hrs. and I wasn't warned so had to sit and read magazines that were minimum 1 year old! Thanks for your input! Chantalle
  14. I was really nervous about this appt. She was surprised when I told her I'd had IBS since I was 3 yrs. old. I told her the reason she didn't know was because I hadn't had the best of experiences in the past with my doctors when I discussed IBS at all with them. I believe the protocol was to soothe the patient as it was thought to be caused by stress and possibly depression or something. I felt as though my old doc was condescending. Anyway, it scared me away from ever mentioning symptoms again. This doctor was so different. I've been seeing her for 8 years or so. She said to me "have I ever made you feel that way before?" I told her no, and it wasn't really her that I was worried about - just the feeling I carried around all these years about previous doc visits. Anyway, long story short I'm being tested tomorrow for celiac, glucose test and lactose intolerance. I may still end up with still having IBS only and may have to continue living like this - but that I know how to do! Not all doctors are tough to deal with. This doctor has ALWAYS sent myself and kids off for tests rather than cause worry. Anyway, thought I'd share a good experience with you! Chantalle
  15. I'm very new to all this. I have been diagnosed with IBS since 3 yrs. old (of course wasn't called that then). I have always, always been a terrible sleeper - insomnia often and never sleep through the night - I'm up at least 5 times a night and have a hard time returning to sleep (particularly if my hubby is happily snoring next to me!). I didn't realize that this might be a symptom of celiac disease. I'm going to see my doc tomorrow to request I be checked for celiac (nervous about it as I gave up years and years ago ever saying anything about my IBS symptoms because doctors always made me feel like I had some sort of mental issue!). I'm always tired - guess I need to do even more research on this.... Chantalle