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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

cyclinglady

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About cyclinglady

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    Female
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    CD diagnosis: 3/2013, DGP IgA positive only, Biopsy: Marsh Stage IIIB,
    Hashimoto's Thyroiditis, Diabetes, Osteoporosis, Thalassemia
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    Orange County, CA

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  1. Nice to know that Disney makes an effort to take care of people with allergies or special diets (like gluten free!): https://publicaffairs.disneyland.com/walt-disney-parks-resorts-receives-honors-allergy-friendly-fare/
  2. Maybe it was not the chili. Maybe you are sick with the flu? Sometimes, we jump to the conclusion that celiac disease is the cause of our current symptoms. I know I have done this. Hormel is NOT considered good, but it is gluten free and safe. I give it to my kid on top of gluten-free pasta or corn chips in her thermos. Add plenty of cheese and it is pretty good. Though I admit, I used to think the burritos and strips I purchased at the beach shack as a kid were SO good! 😆 Even bad cooks can make a simple chili. Follow any recipe, but sub out the spices for Carroll Shelby’s Chili mix which is even certified gluten-free. My recipe is 2 or 3 pounds of cooked ground beef, 32 oz can of beans (I usually make my own beans), a can of diced tomatoes, and Hatch’s green chili’s. I suppose you could add some cocoa to change it up. Do not hold me to this recipe regarding the ratios of ingredients as I do not follow one as my batch size changes, etc. I cut back on the spices when I see my family sweat! 😆
  3. Gluten Exposure for Celiac

    Hey Deb, In theory (based on some studies), your small instestine should heal pretty fast (within weeks), but often there is collateral damage that can take longer (like your bone pain). For me, personally, a gluten exposure can set me back three to six months. My antibodies can last over a year. And worse, I now developed autoimmune gastritis and hives. Yikes! I had some hip and rib cage pain when I was first diagnosed. Two months later I fractured some vertebrae. I had been undiagnosed for so long, that I developed osteoporosis. I assume that once on a gluten free diet, your pain should diminish based on a strict adherence to the diet and your previous experience. I hope you feel better soon!
  4. celiac?

    Good for you for trying to manage your health. My only suggestion would be to find another doctor. Obviously, he does not even follow standard recommendations for screening. I would worry that he overlooks other things too. It never hurts to get a second opinion. Second opinions have saved my family from unwanted surgeries and incorrect treatment. The IgA (Immunoglobulin A) Test, in the case of celiac disease testing, is a control test. If he had ordered it, you would have known if the results are valid or not. Now you are left in diagnostic Limboland. Again, my TTG was negative it has never been positive even in follow-up testing. You can go gluten free for life. My hubby did that 17 years ago some 12 years prior to my diagnosis (per the advice of his GP and my my allergist). But he will be the first to tell you that I get way more support from family, friends and medical. I wish you well!
  5. Sure, you should consider getting tested for celiac disease. There is no test for Non-Celiac Gluten Intolerance or Sensivity. However, you have to be consuming gluten daily for at least 12 weeks as ALL celiac tests require you to be consuming gluten. Learn more about testing: http://www.cureceliacdisease.org/screening/
  6. I am sorry that I was not clear. I only mentioned your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms? It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance. This is not perfect, but it is the only tool in the toolbox for now. My husband has been gluten free 12 years prior to my diagnosis. He went gluten free per the poor advice of his GP and my allergist. So, I am not trying to discount your diagnosis at all. I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure. I am curious because I have had issues over the last year. I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so. Like, you, I am very careful. I have no idea as to how I was exposed. The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant. My hubby did not have any symptoms at this time. He is like my canary. I went to my GI and my DGP IgA was off the charts even some three months later. My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six. My GI offered to do an endoscopy in the summer. Instead I chose to follow the Fasano diet. I still was not feeling well. In December, my antibodies were 80. They were either on a decline or they were increasing again. I opted for the endoscopy. My biopsies revealed a healed small intestine (you could see the villi on the scope too). But I was diagnosed with chronic gastritis and had a polyp removed. So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues. Again, my apologies. I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction. Maybe, like me, Gluten was not the actual culprit.
  7. I am just curious. As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit? If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive, but your doctor still suspected celiac disease. You improved on a gluten diet. Other than observation, how do you really know? Could it not be something else that triggered your symptoms? I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs. But traces of a protein within a shampoo from someone else’s hair that was rinsed?
  8. I just want you to remind you that I just had a repeat endoscopy last week after my diagnosis some five years ago. Even though my antibodies are still elevated, my intestinal tract has healed. But why have I been feeling sick? I have chronic gastritis. Who would have guessed? I do not drink (rarely), take any meds other than my thyroid replacement, and do not have H. Pylori. That leave autoimmune as the most likely culprit. I also have some other minor issues that I think is related to Hashimoto’s. So, I am in an autoimmune flare-up, but celiac disease is not the cause of current my woes. My endoscopy results have validated that I have been doing a good job about avoiding gluten. I can relax a bit now! I think because the treatment for celiac disease is a burden placed on us, it can become overwhelming. Sure, we all eventually master the diet and most of us go on to lead plain old normal lives, but if something is off, celiac disease is the first thing that many of us blame. Actually, we blame ourselves, to be honest. We have to remember that we are often dealing with other health issues too. As far as hair, I buy gluten free shampoo. It is from Costco and it says it right on the label. Nice and inexpensive. Do I really need it to be gluten free? No. I think the last time I swallowed shampoo, my mother was most likely bathing me and I did not heed her warning to keep my mouth shut (baby shampoo may not sting your eyes but it tastes awful!). Like you, sometimes I think it helps to have one less thing to think about and that can be priceless.
  9. Sore nose

    Teresa, You posted this same question yesterday. You did get a response, but you did not answer the questions asked which might help you. We can not diagnose you over the internet. We are not doctors, but just people who can not consume gluten. We share tips, our personal experiences, and ask questions about the gluten free diet. If you have or suspect DH, read through the DH section for coping strategies. Keep to the gluten free diet. Talk to your doctor! It might NOT even be related to celiac disease!
  10. Infertility

    Welcome! Let me put your mind at ease. While is true that some celiacs have fertility issues, it is usually because they are undiagnosed and not being treated. I think your approach of focusing on your health for the next six months to a year prior to conception is an excellent idea. Not only will it help insure a healthy pregnancy, but you will be able to handle and care for that baby for the next few decades! I was in a dedicated gluten free bakery and saw a young family with a six month old baby boy. I love babies and struck up a conversation. They said that the wife had been sick with odd issues and finally got diagnosed with celiac disease. Six months this later, she got pregnant after they had been trying for three years. So, learn the gluten free diet. Choose healthy foods and try to avoid processed junk foods (not good for anybody), excercise gently, reduce the stress in your life, and I bet you will be fine! Green stools can be a sight of rapid transit. It could be gluten, a virus, or food poisoning. Stay hydrated and you will be fine. Celiacs have leaky guts, so you might have developed an intolerance. How long have you been gluten free? Try reading our Newbie 101 thread located at the top of the “Coping” section of the forum. Take care.
  11. I would trust the label over what some customer rep said on the phone but consider calling back and talk to a supervisor. I looked up the product and confirmed there was no gluten. I can not imagine gluten being added. The rep might think “stuffed” is the same as “stuffing” as in turkey. 😆 Seriously, there was a time when blue cheese was questionable as being safe for celiacs. The mold might be been grown on a wheat or rye medium. Learn more from Trisha, a gluten free dietitian and owner of the Gluten-free Watchdog. https://www.glutenfreedietitian.com/blue-cheese/ I do not know about you, but when I doubt a product, I usually do not purchase it as their are some many other good things to eat. I don’t always have the time to do the research and sometimes piece of mind is priceless.
  12. You had a positive on the blood panel. That usually means the next step is an endoscopy, which you had done. So, now you need to wait for the results. I can tell you that my doctor told me that everything looked good, but the biopsies revealed vill damage. I also only had one positive on the panel (DGP IgA). That was five years ago, some doctors have scopes that can now often visually see the damage. Hang in there!
  13. Welcome! Get that follow-up testing. At least help confirm that you are compliant with the diet and that celiac disease is not the root cause of your brain fog and anxiety. Once ruled out, your doctors can focus on other possible AI issues that are beyond your control (unlike celiac disease). For now, you can focus on a good healthy diet. Consider a modified AIP diet. I just read a study involving this diet and IBD (autoimmune) done by Scripps in San Diego. There was a 77% remissions rate. Amazing! This can (in theory) be applied to other autoimmune issues. It helps to validate that diet can heal. http://journals.lww.com/ibdjournal/Pages/ArticleViewer.aspx?year=2017&issue=11000&article=00021&type=Fulltext here are some follow-up guidelines: http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/ Hang in there. Consider Ennis’ tips too, but I prefer and do well without supplements. My doctor has checked me for deficiencies and so should yours. You need to really figure out what is best for you (food, supplements, etc.)
  14. I think if you search through this section of the forum, you will find that many children see a quick drop in their antibodies. Recovery can come fast or slow in both kids and adults. We are all different! I can tell you that my antibodies are still high, yet I had a repeat biopsy done last week showing healthy villi (Marsh Stage IIIB at diagnosis five years ago). So, here I was beating myself up for having elevated antibodies which made it look as if I was not diet compliant, and I was actually healed. Researchers have not done a lot of studies about repeating the antibodies tests after diagnosis to monitor progress (lack of funding for sure). Repeat antibodies testing is not perfect, but it is the only tool in the box right now. We suspect my antibodies (DGP IgA only positive on the panel ever) are up for other reasons (e.g. my Hashimoto’s, another AI issue, residuals from a previous gluten exposure). I do have symptoms but these were attributed to other things including chronic gastritis which, since I do not have active celiac disease, h. Pylori, drink alcohol, and am allergic to NSAIDs and other meds, is probable autoimmune. Great job on keeping him safe! I am glad he is feeling better. He is seeing results from the diet which helps confirm the diagnosis. Systemic issues can take longer to heal, so just keep moving forward.
  15. Shopping for health insurance can be a nightmare, but it was way worse prior to the National Healthcare Act. It was pretty much impossible to compare plans back then. It is still tough though. We are self employed and have been buying insurance for 20 years. If your doctor does not have a secure email system, then send it though the snail mail. It is legal and safe and it is a federal offense to tamper with mail. You can also go to a UPS store or Kinkos and have them fax your letter for a small fee. Depending on the letter content, I would send it registered mail. It does sound like your doctor’s office made an honest mistake. Be sure to follow-up in a few days. They should have your results at the top of his in-basket!