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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.


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About SGWhiskers

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  1. I just returned from Savannah a month ago. We ate at Churchill's and at the Marriott's Bohemian on the waterfront. I had excellent flavorful meals at both locations. There is also a coffee shoppe 1-3 blocks south of the Starbucks that serves a gluten free cake. I couldn't have it because it contained dairy, but I did pass the sign with my mouth watering every day on my way into town. I ate at another restaraunt on the waterfront that had a relatively good gluten-free meal. I found that everywhere I went, waiters seemed to not be phased by a request for a gluten-free meal and knew what to do more so than here in my midwestern town. I'm extremely sensitive, and had no problems. My biggest complaint was the hotel we stayed at made me 2 wonderful gluten-free meals the first 2 days, then when I ordered those dishes the next few times, they were bland and boring. Oh, there is also a Mellow Mushroom near the Hilton that makes a great gluten-free pizza. They only come in mediums, so it was quite expensive for one person, but with 2 celiac's it would be perfect. The hilton is several blocks in from the waterfront, so you are unlikely to head there. There was also a weird little convenience store that looked like a converted bank or gas station that sold gourmet (including gluten-free) packaged foods and regular prepared foods. Again, it was off limits for me because of other allergies, but might be a place to go if you need some cookies or something. It was a block or two closer to the waterfront from the Hilton. Not a lot is down that way, so it isn't really worth a trip.
  2. The rice that was burnt on has been there for months. We got most of it off months ago, but there are still some black dots burned to the bottom. I've been chiseling it off with alcohol and my fingernail for the past 1/2 hour and it is slowly coming off. The macaroni was never cooked in this pan and was only in the pot for 30 seconds or so. I caught him as he did it. (We have a mostly gluten free house and he is used to not having to think). Fabric softener sheet? Is that a trick for loosening burnt on food?
  3. Hubby absent mindedly put macaroni in my non-stick pan. It was in the pan for about 30 seconds unheated. When I went gluten free 3 years ago, I scrubbed these pans to death. They were unscratched, expensive, and almost new. All was well. Now this particular pan has burnt rice permanently adhered to the bottom. I'd consider myself a super sensitive celiac. Must I really throw this pan out? What if I can chisel the burnt rice off the bottom? What would you do?
  4. Since the researchers don't know the answer to this one, I thought you guys might have the best guesses. I've got celiac. I'm assuming my infant daughter does not. The research shows that ages 4-6 months are the best time to introduce gluten to reduce the incidence of celiac. I've got a gluten free house right now but will introduce gluten to my daughter if there is any chance it might help her avoid triggering the celiac predisposition. I understand there is not a nutritional need for her to have gluten. How much gluten do you think an infant might need for the preventive effects to kick in? How often? (daily, weekly?) How long? (how old before we can go back to a gluten free house again?) Thanks for any thoughts you might have.
  5. Almost 1 Year gluten-free

    I found that calcium/magnesium helped the sensitivity in my skin. I also found that when I tried to reintroduce dairy on multiple occassions, I bruised more easily. I have a milk allergy and had the nick-name banana legs growing up. Last time I tried milk for a few weeks, Banana legs made her return.
  6. Pregnancy

    I'm sorry about the pregnancy. The best things you can do is to stay gluten free and make sure your vitamins are checked and normal. I'm wondering if it would be worth having your hormone levels checked to see if you need to have progesterone supplemented the first 6 weeks of pregnancy.
  7. I had neuro symptoms and felt more awake after several weeks and was functional again by 3 months. My memory improved some around 18 months, but it is still weaker than it was. I discovered that almost immediately after going gluten free, my neuro symptoms showed little bits of improvement, but that when I made mistakes I had more pain and fatigue again. I'm not sure if this helps, since I wasn't asymptomatic, but it sounds like you are not entirely asymptomatic either. Unlike many posters here, my cross contamination reactions did not bring on symptoms that were worse than prior to diagnosis. My reactions have continued to get milder and milder since diagnosis. Although comparing those days to normal days, it feels like someone shot me in the head whereas I was used to that feeling before.
  8. Why Can't She Have It In Moderation?

    Stick around on the forum and you will learn a lot of information about research, advice, coping, and cooking. You are a great husband for doing research for your wife. When I'm describing cross contamination or cheating on the Gluten Free diet, I like to make a distinction between reactivity and sensitivity. All celiacs are highly sensitive to gluten, meaning they will have microscopic damage from even small (think crumb size or less) amounts of gluten. There is a study floating around out there that states that 90% of celiacs will have intestinal damage from 20 parts per million of gluten contamination in their food. The other 10% will have damage from smaller amounts of gluten. As celiacs, our sensitivity levels are similar. Essentially zero tolerance to avoid intenstinal damage. Then there is how a person subjectively reacts to the gluten. How does it make them feel? Some people get a little gassy from a random crumb. Others, feel pain for days or weeks from foods processed on the same lines as gluten foods. There are some celiacs who stop reacting to gluten altogether after a period of time (however they still have intestinal damage from eating gluten). Everyone's reaction is different. People who are regular cheaters on the diet will often not notice how they are reacting because it just feels normal for them. For this reason, I often advise people to be extremely strict in the beginning of the diet, so they find out how good they can feel totally gluten free and then when they add back slightly riskier foods like gluten-free oatmeal, grains, foods from shared lines, restaraunts, and friend/family cooked meals, they will be better able to tell if they are reacting. Now, why would you and your wife care about occassional intestinal damage? One study suggested that undiagnosed celiacs have a 2x chance of dying from all causes, but that celiacs who are intermittent consumers of gluten have a 6x chance of dying from all causes. The same blood tests used to diagnose your wife can be used to monitor her compliance with the diet. 6 month then annual checks are sometimes recommended. The numbers should drop over time and eventually fall into the normal range if she is able to get all the gluten out of her diet. Cross contamination happens to all of us, especially in the beginning. It's a lifestyle change once you are diagnosed, but with time and education, most of us are very happy with our gluten free foods and healthier bodies.
  9. Your encouraging post about skin sensations and trigger points resolving gave me the boost I needed today. I am very discouraged (although I always have hope)and your words helped immensely. Thanks!

  10. As a speech pathologist, I have not seen literature associating dyspraxia with celiac. There may be some out there I have not seen though. There is some evidence of speech language impairments in adults related to celiac and gluten ataxia. There is also evidence that gluten ataxia causes lesions in the brain. I'm guessing the association between celiac and dyspraxia (as well as other speech-language disorders) is understudied. As a celiac with neurologic issues, I would not doubt a possible association. I developed mild slurring, stuttering, and mild to moderate word finding problems as my symptoms became more severe. It really made communicating with other speech pathologists embarassing. Not all my symptoms have returned to baseline. My vitamin levels were normal for the most part. I'm just a celiac with neuro problems instead of GI problems. The good news is that if there is a connection, now that your daughter is on the gluten-free diet, she will only improve. is the national speech pathology website and there is lots of information for what you can do at home on there. Consider getting her vitamins tested to see if she is low in anything specifically. The best thing you can do is treat the celiac and treat the dyspraxia and processing issues. The more aggressively and sooner the better on the dyspraxia and processing is my opinion. The sooner those are under control, the less difficulty she will have with all aspects of school and especially language which is so important to get well established in the early grades. Read up and start a 10 minute/day home exercise games and you will be ahead of this in no time. I've found that parents who schedule fun, brief activities daily with their children make better progres than families who make structured speech work time for 30-45 minutes a night or than families who do nothing at home. The 30 minute kids get stressed and resist therapy. The zero home intervention kids just take longer.
  11. Skin Pain And Sensitivity

    Before diagnosis and while I was in the intial months of healing, this was a major symptom for me. It hurt to towel dry after a shower. That was when I knew my doctors were full of crap and I needed to get aggressive with finding out what was wrong. I remember curling up in a ball and crying to my husband one day because my towel and my sleeves and his touch were hurting my skin so badly. I had already been to a neurologist to no avail. Once I got my diagnosis, it took a few weeks, but things improved a little. The stricter I got with my diet, the better my skin felt. After about 3 months, the towels and sleeves didn't hurt anymore. 6-9 months later, I was able to tolerate my husband nicely touching my arm or leg without it making my skin crawl. Now 2.5 years later I'm retraining him to give me a back rub like a normal person again. Time on the gluten free diet really does move faster the longer you are in the diet. Hang in there. It's hard to believe now, but it really does get easier as time passes and as you see baby steps toward improvement. As a side note, all of my neurologic symptoms have improved on the gluten-free diet, but not have been eliminated totally. Almost all are back to a level which is intermittently annoying, but not impairing. Trigger point therapy was very effective in helping speed up getting rid of the muscle knots that went along with my tender skin. I had both trigger point injections and a physical therapist who taught me trigger point release to do at home. I was pretty aggressive in doing 30-90 minutes at night before bed while I watched TV.
  12. My Doctor Refused To Test For Celiac

    Before you get off gluten, I would go back to her and restate that you would like the celiac blood testing and if she refuses, request that she make a notation in your chart that you requested and she refused the testing. I suspect you will get the blood work you are wanting. Then, go back on the gluten free diet if the results are positive. If they are negative, still go on the gluten free diet for 3 months because there are many many people who respond well to the diet even though they don't test positive on blood work or biopsy. Your doctor has a potentially valid arguement for wanting you to just try the diet. There are plenty of people here who have never been formally diagnosed and are happy with their response to dietary changes. That being said, you still have gluten in your system and now is the BEST time for you to try to get a formal diagnosis if you want one. I have one and am glad I do, but would never put myself through a 2-3 month gluten challenge to getting a formal diagnosis now that I've been gluten free and healthy. Good luck and be clear with your doctor about what you want.
  13. Products At Labor And Delivery

    Thanks for the well wishes. I'm just counting down the days. Some days I think I'll be in labor by morning. Others, she feels like she will stay here for the next 2.5 weeks. The hospital has already given me permission to take my own OTC meds and I will be communicating with the nurses regarding dosages etc. I'll only take my own percocet if it is prescribed to me. I'll just substitute in my pills for theirs. I would, of course, talk to the pharmacy first to try to do it the right way, but it has been my experience that it often takes 2 days to get confirmation from the generic manufacturer regarding the gluten status of a medication. If I deliver on the weekend, that could mean I would be home before the gluten status is verified. I'll request IV meds as opposed to pills first anyway. And really, I would only be taking them as a last resort because I don't want to add managing constipation to my list of post natal worries. I had laparoscopic surgery in the past and wasn't remotely close to needing pain meds. I know a c-section or severe tear could be a different story though. I listed all the products I checked out at the hospital for the baby for others information, but since we don't use any petroleum/fragranced products on ourselves, we won't be using any of their chemical laden products on her. Since she is rooming in, we should be able to do her bathing, diapering, etc. ourselves with our own products. I wasn't planning on bringing any oils for her skin. Do I really need those? I know she does not need a bath and the vernix is a protective coating that can be left on. We will give her first bath when the time is right for us. Not when it is right for nursing. I really do appreciate your support and suggestions.
  14. I had a vegetable steamer that I cooked rice, veggies, oatmeal, and gluten pasta in before going gluten free. I scrubbed and cleaned that thing forever. I kept getting glutened. I finally decided there must be gluten embedded in the mineral deposits on the heating element. I soaked and scrubbed with vineger to get the mineral deposits off, but I never got rid of it all. I'm very sensitive to cross contamination, but I would recommend getting your own to avoid this type of problem.
  15. Pregnant And Missing Gluten!

    I didn't get a direct craving for gluten, but I did want my old favorite munchies. At some point, I gave in to the carb cravings and increased my purchases of the gluten free substitutes. gluten-free waffles have kept me happy recently. Fortunately with my pregnancy, the cravings went in waves and I moved on to something new every month or so. Congrats and remember this craving will pass.