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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 dblreedr

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  1. Thank you both for this. The great news is, the doc brought up the need for biopsy. No fight necessary. Min 5 week wait for it - but only because I've only been back on gluten for about 7 weeks and he wants me to be on for at least 3 months. I'm good with that. We are also going to do a full set of blood tests, but I need to do them just before the biopsy so that the gluten levels are about the same for both. The doc was young, and works out of the university hospital. I'm assuming that may well have made a difference in how seriously this is taken. That and the massive weigh-tloss and unexplained abdominal infection I had 10 years ago... Actually, he was concerned enough about the weight-loss to ask if I want him to investigate further if my biopsy is neg. Now I'm going to spend the next 5 weeks checking off all the items on my bucket list of gluten-filled delicacies - many times over.
  2. So, I 'm finally seeing the specialist tomorrow - after a hard push to convince my GP to make it happen. I first had to go off gluten and then back on before I could get any further with the system here. What a nightmare that's been. I had neg. blood tests about 5 yrs ago. My niece did too, but her biopsy 2yrs later was pos. and her specialist said all family members with neg blood tests needed to get biopsied (My brother is also celiac, but he was diagnosed after they thought he had stomach cancer, so my understanding is blood tests weren't run for him). Between difficulties convincing my GP in Canada, a trans-atlantic move, no med insurance for 2.5 years, it's only now I'm getting this all sorted. I'm sure the Doc will want me to do blood tests again, so can someone please list what I should be getting? My GP wanted to send me for tests, but didn't know which ones to requisition. Seriously. Also, does anyone have any information I can use to convince the Doc that a biopsy is mandatory if blood tests are neg again - reasons why a diffinitive diagnosis are necessary? I do have 4 kids, and that to me, given the widespread reluctance to test for this, is more than enough reason to have a diffinitive diagnosis. I'm so tired of fighting for myself with the medical system. Every time I see a new medical professional, I have justify my medication allergies. What happens to you when you have morphine? Well, gee, I don't really know for sure because the last time a doc didn't believe me when I said I was allergic, I only have vague recollections of mass panic while the nurses replaced all the tubing out of my click your own medication machine, but the time before that, it was swelling and unbearable itching... TIA. C.
  3. Time for an update. After 11 weeks off gluten, I was no longer freakishly cold and requiring up to 5 layers including a down vest to stay warm. I had no canker sores, and the knee/leg pain I'd experienced since childhood pretty much disappeared. And for the ick-factor - after a life-time of floating stool, it started sinking. During those 11 weeks, I was meticulous about what I ate and came in contact with. So much so, I only ate at home because I am shy and self-conscious about making any kind of fuss. The plan was to stay on Gluten-free for at least 12 weeks. I didn't quite make it because we had to make an unavoidable over-night trip to Germany. So, I prepared myself with celiac restaurant information printed in german to avoid any misunderstanding. Long story short, I got glutened. My plate showed up with bread on it and the 'roast' chicken had been lightly coated in flour. Hubby removed the bread and wiped the crumbs off my plate. I didn't clue in to the flour on the chicken until I'd had 2 bites. I stopped eating it then. Ironically, the meal arrived with no yogurt dressing for fear it may have been thickened with something containing gluten. Yes, I should have had them take the plate back and I should have complained, but back to that shy and self-conscious and don't like to make a fuss thing. Also, I have to admit, I didn't seriously think I would have a reaction to such a small amount of gluten. As an aside - the hotel sent me a satisfaction survey and I raised the issue there. I woke in the middle of the night to abdominal pain. Not severe, but very there. I maintained gluten-free for breakfast. Yoghurt and fruit salad. Hubby and I talked it through in the car on the way home, and agreed that I may as well go ahead and start my challenge. So, here I am eating all the things I've missed. Cherry pie, chicken sandwiches, raisin toast topped my list. As for symptoms, I was sceptical about how fast they can come. The pain in my abdomen has not eased since Thursday/Friday when I first got glutened (this is new - I occasionally had severe pain before, but not constant and bearable). Since then, I have a canker sore forming, major gas, my knee/leg pain is back, and so are floating stools. I can see why people abandon their gluten challenge. I'm going to stick with it and arrange to see my GP near the end of April and push for the biopsy. I don't know how long it will take for that to be arranged, but I won't be available for it until at least mid-May (family coming for a visit), so that would be at least 6 weeks back on gluten. In the meantime, I'm making a gluten bucket list and throwing my taste buds a big ol' party.
  4. It's been checked a number of times over the years (although not recently), with no indication of a problem. YIKES. That's the biggest list I've seen yet.
  5. I have always been extremely sensitive to cold. Even when the temperature in the house is 20 + degrees C, I wear upwards of 4-5 layers including fleece and a down vest. At night, I wear fleece pyjamas and have an extra quilt on my side of the bed in addition to our down one. Since going gluten-free, I have been comfortable with as few as 2 layers in the day and haven't needed my down vest even once. At night, I've given up on the extra quilt, and even end up kicking off the down. I'm curious as to whether this is just a coincidence, or whether constantly feeling cold is connected to gluten consumption. Thoughts?
  6. Thank you everyone. I suspect we are not being quite as good about this as we should. I bought a bunch of Nairn gluten-free oatcakes and related goodies whilst we were in the UK. Hubby and I talked about it, and we plan to go ahead and eat what we have, but once the oaty-yumminess is gone, we will leave oats out of our diet as well. Fortunately, we have a website/database here in Holland that I can search by supermarket/factory, food type and food name to see what's gluten-free. That makes things much easier because my Dutch is terrible and reading ingredient lists in English is hard enough. The one big change I've noticed is how hungry I am. I went from barely finishing my supper to eating a much larger portion than normal and then hungry again an hour later. Also, I'm hungry when I first wake up. Normally, I can't even consider food until I've been up for a few hours. Maybe I can gain back some of that weight I lost. I did bring home 2 gluten-free recipe books from our trip to the UK. Supper isn't a huge issue for me as most of what I cook (except pasta) is quite easily tweaked to avoid gluten. It's the snacks and goodies that have become the biggest hurdle. It looks like the cookbooks may help us with that.
  7. Sorry, it's a rather long post. I am completely frustrated with the medical system. I've felt generally crappy for years and I pretty much stopped telling the doctor everything bothering me because she always gave me the vibe that she considered me to be a hypocondriac. I've avoided seeing a doctor about actual medical issues because I'm tired of being told nothing is wrong. I've suffered from migraines, mouth ulcers (canker sores), itchy zit-like rash, particularly on my face, instances of severe abdominal pain that eventially resulted in the removal of my apparently healthy appendix (they cleaned out a massive infection in my abdomen) and, nausea, heart-burn, severe joint pain, and petechial hemorrhaging. I had an anencephalic pregnancy, I was diagnosed with fibromyalgia a number of years ago. A little family history: My brother was diagnosed celiac at age 45 and I was advised to get tested. My blood tests all came back negative and we thought that was the end of it. My niece (brother's daughter) was subsequently diagnosed when she was biopsied for a seemingly unrelated reason (she also had negative blood tests). Her doctor advised all family members who's blood came back negative get biopsied. So, I went to my GP, explained the situation and asked her to arrange a biopsy. She was NOT particularly cooperative on that front, but finally agreed to arrange to get me into see a specialist, but the waitlist is quite long. In the meantime, my partner accepted a job offer in Europe and off we went. In the first 4 months in Europe, I lost about 35lbs (at 5ft 7in, I can't afford to drop from 140lbs to 105lbs) - I stopped weighing myself after that, but I know I've lost more based on the fit of my trousers. My only change in diet was a lot more pasta, bread and baked goodies than I consumed in Canada. I never did end up seeing a doctor during the 2 years we were in France, but since moving to Holland, I had to see one to get a form filled out for my driving licence. I mentioned the need to get biopsied for celiac at some point soon, and he said I didn't need to get a biopsy, I should just go off gluten for 2 months and then go back on it and see what happens. Anyway, we just went gluten-free this week as per the doc's suggestion (we waited until after the holidays as we went away and didn't want to make life more complicated than necessary), and will stay that way for at least 3 months and then go back on to see what happens. I'm not convinced this is the way to go, but I'm wondering, if going back on gluten ends up showing it to be the issue, should I push for a biopsy for a difinitive diagnosis? I have 4 children (3 adult and one headed that way) and with the difficutlies I've had to get doctors to take this seriously, I am concerned that they wont take the testing of my children seriously without me having a definitive diagnosis.