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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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  1. Mariann, You must be so worried about your son! I am glad to hear that you are all feeling better on the diet and I hope that, if your son does have an additional health concern, it will be fixed easily. Take care, Josephine
  2. Mariann, I was diagnosed with Celiac in September 2002 by blood work and biopsy. In September 2003, the small bowel follow-through showed total healing and my blood work showed no antibodies to gluten. The gastroenterologist said that damage would have shown on the x-ray. He diagnoses and treats a lot of people with Celiac and he seems to know what he's talking about. In the case of a person with minimal damage to their small intestines, perhaps he would not rely on an x-ray for a follow-up; I don't know. This wasn't the case with me and I didn't ask him about other possible scenarios. In my case, by the time I was tested, there was no doubt that I had Celiac. I'm reminded of my mother, who was diagnosed with Type 1 diabetes at the age of 57. She was exhausted and sick for a year before the diagnosis. She was checked specifically for diabetes 2-3 months prior to diagnosis and the test results were "normal". By the time she was diagnosed, she was "this close" to going into a coma. It seems as if there are medical conditions that, unless and until they are full-blown, doctors are not always able to test for and identify. There is still so much for the scientists to learn. How is your family doing? Why did you & your son have the small bowel follow-through? Are you still seeking a definitive diagnosis for yourself and your children? I hope you aren't having additional health problems. Take care, Josephine
  3. Hi, Thomas! You're most welcome! I didn't know about the small bowel follow-through until the gastroenterologist ordered it for me last fall. I, too, had assumed the only way to check would be by doing another endoscopy. Regards, Josephine
  4. Thomas, I'm not sure I understand your posting. In most cases, if someone with Celiac follows a completely gluten-free diet, their small intestine does heal. It is possible to determine if healing has taken place while the person is still alive. I was diagnosed with Celiac just before I turned 41 years old. I had symptoms of the illness from early childhood. One year after going gluten-free, I had blood work that showed no antibodies to gluten. I also had a small bowel follow-through (x-ray) that showed complete healing of my small intestine. The gastroenterologist said that, if he hadn't told the x-ray people I had Celiac, they wouldn't have been able to tell. I'm supposed to see him once a year for follow-up (unless I have a problem and need to see him sooner). Debmidge, how long has your husband been following a gluten-free diet? Has he had follow-up testing (blood work and either endoscopy or small bowel x-ray)? That's how refractory or resistant sprue is diagnosed. If enough time has passed since going gluten-free, the blood work would show if your husband is unknowingly ingesting gluten. An endoscopy or small bowel x-ray would show if healing is complete. Regards, Josephine
  5. Debmidge, I can really relate. Both of your experiences are so much like mine and my husband's. In time, as your husband's body recovers from the effects of long-term illness, he will feel better physically and he will be able to do some activities and hobbies that are interesting and rewarding to him. I hope that he can tolerate the new medications and that they will help him feel better emotionally. Just prior to my diagnosis with Celiac, I was on Effexor, Wellbutrin and Remeron all at once and the addition of the Remeron was a huge mistake. I didn't shake but my legs and arms would jerk and twitch. It was really unpleasant. The Remeron gave me other, more serious, problems and I didn't take it for very long. Kudos to you for working so hard and sticking by your husband when he was sick for so many years. My husband has done the same for me. My being sick with undiagnosed Celiac cost us financially, too. We don't have a house, our car is horrible, and we're in debt up to our eyeballs. I have to work really hard sometimes to focus on one day at a time and what I am able to do today. On a day when I am able to do the dishes or the laundry or some sewing, wow, that's a lot for me. I think of it as being in my own little sheltered workshop. (I think this reflects both my optimism and my discouragement at being "disabled" in a way.) I hope that my energy and stamina will continue to improve and I have no reason to think otherwise but it is a very slow process for me. I aged a lot in my thirties. This illness took a lot out of me because it was undiagnosed for 41 years. So, I focus on today and try not to think too far ahead into the future. Some days, that effort alone can take a lot of energy. Take care. Regards, Josephine
  6. Debmidge, Did you see my reply to you in, "Several Years of Illness"? Regards, Josephine
  7. YankeeDB, Thanks so much! I will definitely do some reading about it! Regards, Josephine
  8. YankeeDB, Thank you for your suggestions. I was diagnosed with Hashimoto's thyroiditis about 28 years ago and I've been on Synthroid ever since. Every time they are checked, my thyroid and vitamin and iron levels are fine. I've been on Losec for reflux for several months and that seems to be under control. My digestion seems to be fine. Do you think food sensitivities would cause fatigue as the only symptom? I'm so sick of going to the doctor. She listens to me now that she knows I actually have something wrong with me but I don't want to push my luck. I hate the blank stare she used to give me when I'd complain of symptoms before diagnosis. I have cysts on my ovaries and the ovaries are changing physiologically (that's what the doctor said). I have to go for more follow-up testing but it's not supposed to cause fatigue (unless it's cancer but they say they're confident it isn't). I'm still ovulating so I'm not menopausal yet. Something to look forward to. ; ) Thanks again. Regards, Josephine
  9. Debmidge, I've read a few of your posts and I can really relate to what you've written about your & your husband's experiences with Celiac. I was extremely ill for many years before a gastroenterologist tested me for Celiac (blood work & biopsy). I've been gluten-free since October 2002 and, although I am much better than I was, I still do not have a normal amount of energy and stamina. When I was really sick and exhausted all the time, the doctors figured I must have been depressed because all of my blood work was normal (they didn't test me for Celiac). None of the doctors thought I needed psychotherapy; in fact, they often commented on my good attitude and strength of character. I spent three years taking various anti-depressants which didn't work and only made me more tired. When I was diagnosed with celiac disease, I stopped taking the anti-depressants and felt better. I haven't been depressed since then but, believe me, I have felt discouraged many times over my slooooooow recovery from a lifetime of illness. I am not against anti-depressants for people who are depressed. I think these medications have helped a lot of people. I haven't worked in six years. If anything were to happen to my husband, I couldn't support us. Although many (or most?) people with Celiac seem to make a quick recovery, for others, including myself, the recovery process is slow. Tests done last September showed that I had no antibodies to gluten in my blood and my small intestine had healed completely. I am extremely strict with my diet. So why aren't I doing better and doing more? No one knows. But I've been sick most of my life and that takes a toll on the body. I aged a lot in my thirties and I tend to think that the aging didn't just affect my face. I found that there was a real grieving process in the first year or more after diagnosis. I kept thinking, "I wuz robbed!" I felt really sad and ripped off. I lost my youth, my pride and my independence. I lost so much time and so many opportunities because this illness went undiagnosed for so long. It affected my education and my work. I, too, encountered cruel doctors and family members. I lost friends. One family member told me some baloney story about how she was severely anemic but still managed to hold down three jobs (she always had to one-up me if I mentioned being sick). Others told me I wasn't trying hard enough, all I needed was to get off my *** and exercise, I was a loser, etc. Doctors treated me as if I was neurotic, a hypochondriac, a liar, depressive, etc. My brother said mean things about me to his wife (in my presence) and they both laughed. This was after I had told them I was taking anti-depressants and using a light box because the doctors thought I was depressed. (This behavior was not out of character for my brother but it still hurt at the time.) Being ill and dependent for years takes a lot out of a person and, for me and probably for your husband, it will take a while to recover. Even though I was relieved and grateful to finally know what was wrong with me, I still had a big adjustment period, not just in getting used to the hyper-vigilance required for the gluten-free diet but in the idea of having a chronic illness. I mentally reviewed all of my life and relived so many unhappy times in which I suffered needlessly. If your husband decides to attend a support group or see a therapist, I hope he will be able to find one experienced in helping people with chronic illness. Although people with treated Celiac are usually eventually healthy, many have been extremely ill prior to diagnosis, and have also suffered emotionally, and that requires special care (in my opinion). I wish all the best for you & your husband. You've been through **** and back and you should have better days ahead. There is hope. Regards, Josephine
  10. Tom, Looking back, I had symptoms of Celiac from early childhood but was only diagnosed at the age of 41. I missed a lot of time off school and work. I had a lot of trouble with bosses and co-workers thinking I was lazy because how else could anyone take that many sick days? It was really difficult. The doctors always said there was nothing wrong with me so I, along with everyone else, expected me to behave as a normal, healthy person. Regards, Josephine