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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 clevercate

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  1.     Hi Kathy,   It's been awhile since I saw your post back in April. I meant to comment back then but I've been so overwhelmed by this  whole  gluten business that I had to step back for an emotional breather.  Now I feel I'm ready to get back into the game! Firstly, how are you doing?  Everything can change so often and so fast with having gluten ataxia  and then attempting to go gluten free that sometimes "progress"  doesn't seem to be happening. Like you, I was diagnosed at U.B.C.,  by Dr. Sian Spacey, absolutely NO help at all. Anyway, I switched immediately to another ( personable) neurologist back then but haven't  been to see a  specialist about the ataxia  since '05. It seems there hasn't been much research done on GA ,  and only in the past few years-I knew about GA back  at my diagnosis, asked to be tested for gluten intolerance back then. I allegedly was tested and the results were negative ( they often are for GA I discovered ) and was told, basically, that was it for me...I  say "allegedly" because the neurologist's office "forgot" to phone me with my MRI results! Meanwhile I've had toe/finger tingling over the years , as well as a white lesion on my MRI that didn't arouse anyonbe's attention, unexplained double vision last year, cerebellar atrophy, stiff ankles, vertigo,  most other typical GA symptoms and also a terrible depression that is starting to lift.  In  my research I've found: - neuroligical issues are notoriously difficult/slow to heal ( but not impossible) - many people with GA  give up after a few months on a gluten free diet - "gluten free" often isn't. I stay away from most gluten-free products as well as all cereal grains, yeast ( see "gluten Dude" article ), have rice sparingly, dairy & sugar moderately, eat mainly "whole foods" ie. fruit, veggies, legumes, eggs, nuts, organic tofu, I really don't like meat but have bits occasionally and I don't mind fish. What works for me might not work for someone else-it's so individual. - symptoms may get worse before they get better-it can be 6 mo.-1year before ANY progress is made. I've been doing well, but I'm sure I've got some trace or cross contamination exposure. It's been a roller coaster ride! I do GREAT for a few days then REALLY bad ( worse than before!) Then there's "withdrawal" symptoms you can go through, especially if you've been full of gluten for years (me) I could go on, but , for now, be in touch if you like. It's so rare to contact anyone with GA let alone someone nearby ( I'm in Vancouver)   clevercate   ( P.S. good reading material)   (very good ) ( post by SUSAN JENNINGS on January 10, 2011 )     ...
  2. "Gluten-Free New York" I'm sorry to have to say this but I had a terrible visit at this store. Could be that the gal there was having an off day, I don't know, but my time there nearly spoiled mine. I had heard such good things about the store too. My story-I have GLUTEN ATAXIA- quite rare, my brain is damaged by gluten and I must stay away from all cereal grains, even "gluten free" because even 1 ppm of gluten is too much for me. I'm  fine with whole foods, moderate dairy, proteins, organic soy, nuts, veggies, fruit etc...Needless to say, I could see most of the stuff in the shop was made of gluten free cereal grains...fine for most but not for me. Once I nicely explained  this to the lady in the shop she showed me a few items then "switched off. She offered no help or suggestions ie. lost interest once she could tell I wouldn't be purchasing anything. A family came in and bought lots- my son ( he has no dietary restrictions ) and I were  ignored. Don't get me wrong, we weren't treated rudely, we just became invisible! We left, walked back out to Columbus and bought humus, veggies, plain yogurt and fruit. There also were selling  some of the identical gluten free stuff there for much cheaper. Lesson learned:don't be bowled over by glowing reviews, have a plan B. Oh, the shop is VERY awkward to  get into ( stairs up to a door that opens out and knocks you off the step) and very small ( tough if you have mobilty problems ). You'd have better luck at markets if you have more severe dietary restrictions :  Trader Joe's, Zabar's, Whole Foods, and Gracefully (East Village ) are all good.
  3. Hi all,   I'm a newbie to the forum. Right now I am doing my " homework". I've been looking for safe -to-eat mixed nuts and found this: "We are Certified Gluten-Free by the Gluten-Free Certification Organization (GFCO). The GFCO certification meets more stringent requirements for gluten-free products than federal guidelines. Certification assures that the product contains less than 10ppm gluten (5ppm gliadin). No testing method is available that measures to zero."   Hope this helps.
  4. Nutella

    Hi everyone,   I realize this is an older post, but I am newly diagnosed with gluten ataxia. I love Nutella and am "doing my homework" to make sure that, besides having gluten free ingredients, there are no issues of trace or cross-contamination gluten in their manufacturing process. This is the reply I received from them today:   Thank you for your interest in the Ferrero "gluten-free" products.  We have confirmed with our Product Development Technicians that the following Ferrero products do not contain gluten: GLUTEN FREE PRODUCTS: Tic Tac Nutella Kinder Surprise Kinder Chocolate   Kind Regards, Consumer Relations     Good I will continue eating this..a childhood favourite. Has anyone tried gluten free toaster waffles  (Homestyle-Nature's Path) 2 toasted with peanut butter, Nutella, and sliced banana in-between to make a "sandwich"? Delicious!    C
  5. Hi Kamma,   So pleased to hear back from you  (and a  big thanks for the Edit. link , so useful and I hadn't found that site yet...). I am still fairly mobile ( use public transit, walk almost every day...) and intend to stay that way. I believe one of the reasons I may have stayed mobile is that I "use" it  each day , including physio exercises for strength and  balance . I too was surprised that my diagnosing specialist ( a top researcher at U.B.C., whose name I won't mention... ) didn't pursue this BUT then she even forgot to notify me of my M.R.I. results- I had to get my G.P. to phone her office 1 YEAR LATER! I was going nuts! Anyway , as you say "that was then, this is now". Yes,  despite what should have happened, it didn't and I am THRILLED at finally seeming to find an answer...even if others "dropped the ball". In fact, I immediately switched to another neurologist and he didn't pick up on anything either. Of course, I was diagnosed in 2004 and knowledge of gluten ataxia was still in it's infancy (  although I discovered info and took it to my specialist, who seemed to know all about it...)   Interestingly enough, I have been keeping a journal because it's easy to lose track of how I'm doing/feeling on any given day. This is where  I'm at right now, and I'm curious so maybe you have some ideas. AND I know everyone is different  but there seems to be so few of us out there ( at least, online and sharing!). In my second  gluten free week I had tremendous improvements , even though I probably had a lot of trace and C.C. happening). I could almost kidding. Just before this happened though I had extreme aching and leg pain in my upper right thigh, the very leg that always been the most troublesome. After it went away *( 36 hours) it stopped hurting and straightened out, my balance improved, I became very steady/stable, and , best of all, my mood lifted. I no longer felt "darkness" all day but  had optimism and motivation. Also less fatigue, better fine motor and I wasn't constantly clearing my throat. Now , I'm not doing as well, gait-wise, and I've noticed that my mood and speech improve in "waves", this doesn't seem to be related to what I'm eating or drinking either-like you, I am learning that "whole"  foods are a must and even "gluten free" can be deadly. Do you think it's, "normal" especially early on, to be experiencing these ups & downs"? I Keep in mind that I'm doing much better than I was a few weeks  ago, many of the improvements I've retained even when my gait isn't great and I know it can take A LONG TIME for such long-term neurological damage to respond to treatment and improve . I am pleased to be seeing any improvements-it's all a bonus to me! At Rehab, back in 2004, they laughed at my not being able to use a cane properly. I've encountered this from almost every medical professional I've visited over the years-this might explained why I decided to "drop off the radar" as far as doctors were concerned  .... Thanks again for your good wishes and feedback  =)   P.S. After re-rereading your comments you say that healing is not a straight line so I guess my fluctuations are  part of a slow recovery ( even partial ) and not unusuall at all. C.
  6.   Kamma & Co.   I'm so interested in reading ALL of these comments. I'm new to this forum, a brief bit of history.  Although I was diagnosed with sporadic ( idiopathic ) spinocerebellar ataxia in 2004, I've always felt there was more to my conbdition than just the " sorry, there's  nothing we can do for you. Go home and don't worry about it " ( an actual quote from my physician!). I brought up the idea of gluten ataxia back in '04  ( it was a fairly new idea then ) and my diagnosing specialist knew about it and did the standard tests for gluten intolerance ( they were negative ). I was retested a few years later-negative again. My M.R.I. at diagnosis showed a white brain lesion as well as cerebellar atrophy and a "diminutive brain stem". I've also had  widespread muscle ache 15 years +), stiff ankles, vertigo, unexplained double vision, tingling hands and feet (n 15 years + ), speech & swallowing difficulties "black" moods, balance & co-ordination problems....the list goes on. A long story of how I arrived at the decision of trying to go entirely gluten free-but I did 3 1/2 weeks ago and the improvements happening are amazing. I have good and bad days and especially have trouble dealing with accidental cross cobntamination and trace gluten but I am THRILLED to think there is something I can do to help myself and , hopefully, start to heal. ANY improvement is an amazing concept to me. Any feedback on this, my journey ahead, and suggestions are appreciated!