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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 rahga

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    I teach speech communication at a state university in Minnesota. I have been married for more than three decades. My wife and I have three children (all married) and four grandchildren. We love reading, travel, good food, and playing with the grandkids. Gluten intolerance and celiac disease run in my family.
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  1. I had a similar experience. This lasted close to a year for me: sleeping 10 - 12 hours (sometimes more) with occasional bouts of insomnia. Vitamins (double dose) help, as do digestive enzyes and fiber. At least that has been my experience. I am 56 and was diagnosed in November of 2009. I was strict about my diet from day one and by October or November of this past year my energy was back to near normal levels. I still have an occasional day when my energy lags or when I cannot get to sleep. Most days, though, I feel terrific. My guess is that if you remain patient with this, life will slowly come back together for you. I hope that helps.
  2. When I had a TIA last fall I wanted to know if it was related to my newly diagnosed gluten intolerance. I found these articles and ran them by my GP, neurologist, and gastroenterologist (a celiac disease specialist). Each of them took the information seriously. Of course, this hardly proves gluten intolerance was the cause of my TIA. But given the utter lack of any other possibilities, I now have a powerful incentive to remain gluten-free
  3. New research suggests a link between celiac disease and strokes and TIA's (transient ischemic attacks). El Moutawakil B; Chourkani N; Sibai M; Moutaouakil F; Rafai M; Bourezgui M; Slassi I Celiac disease and ischemic stroke, Revue Neurologique [Paris] 2009 Nov; Vol. 165 (11), pp. 962-6. Neurological manifestations of celiac disease are various. An association with ischemic stroke is not common and has not been well documented. We report two cases. OBSERVATIONS: The first patient had experienced several transient ischemic strokes in the past 2 years and then had an acute ischemic stroke involving the territory of the right posterior cerebral artery. Investigations revealed celiac disease with no other recognizable etiology. The clinical course was marked by persistent visual aftereffects, but no new vascular event. The second patient had been followed since 1998 for celiac disease confirmed by pathology and serology tests. She was on a gluten-free diet. The patient had an ischemic stroke involving the territory of the left middle cerebral artery. Apart from a positive serology for celiac disease and iron deficiency anemia, the etiological work-up was negative. DISCUSSION: The mechanisms of vascular involvement in celiac disease are controversial. The most widely incriminated factor is autoimmune central nervous system vasculitis, in which tissue transglutaminase, the main auto-antigen contributing to maintaining the integrity of endothelium tissue, plays a major role. Other mechanisms are still debated, mainly vitamin deficiency. CONCLUSION: Being a potentially treatable cause of ischemic stroke, celiac disease must be considered as a potential etiology of stroke of unknown cause, particularly in young patients, and even without gastrointestinal manifestations. Lohi S, Maki M, Rissanen H, Knekt P, Reunanen A, Kaukinen K. Prognosis of unrecognized coeliac disease as regards mortality: A population-based cohort study. Ann Med. 2009 Jun 23:1-8. Background and aim. Clinically diagnosed coeliac disease patients carry an increased risk of mortality. As coeliac disease is markedly underdiagnosed, we aimed to quantify the risk of mortality in subjects with unrecognized and thus untreated coeliac disease. Method. Blood samples from 6,987 Finnish adults were drawn in 1978-80, and sera were tested for immunoglobulin A (IgA)-class tissue transglutaminase antibodies (Eu-tTG) in 2001. Positive sera were further analysed for endomysial (EMA) and tissue transglutaminase antibodies by another test (Celikey tTG). EMA- and Celikey tTG-positive cases were compared to negatives as regards mortality in up to 28 years of surveillance, yielding a total follow-up of 147,646 person years. Dates and causes of death were extracted from the nation-wide database. Results. Altogether 74 (1.1%) of the participants were EMA- and 204 (2.9%) Celikey tTG-positive. The age- and sex-adjusted relative risk of overall mortality was not increased in either EMA (0.78, 95% CI 0.52-1.18) or Celikey tTG (1.19, 95% CI 0.99-1.42) -positive subjects. However, antibody-positive cases evinced a tendency to die from lymphoma, stroke, and diseases of the respiratory system. Conclusions. The prognosis of unrecognized coeliac disease was good as regards overall mortality, which does not support screening of asymptomatic coeliac disease cases.
  4. I was diagnosed this past fall as well and have been gluten free since Thanksgiving. I had a few days of incredible energy and clarity, but that faded and around the start of the year began to go down hill big time and it has pretty much been daily G & D ever since. The lesson for me has been that I need to go back to square one and proceed verrry carefully. I wasn't being careful enough on (what I assumed were) minor issues and am paying for it now. Fortunately the brain fog is mostly gone. I, too, am in grad school, and going gluten free enabled me to burst through on some deadlines. But if I am going to finish the degree I need to be very conservative regarding my diet. I don't know if that helps... I thought you might appreciate knowing you are not the only one.
  5. I'd like to change my user name to something more anonymous. Is it possible to do this?
  6. I got the results of two blood tests yesterday. The doc said I have the genetic markers for celiac disease, but the other blood test was negative. He said the genetic test, taken together with the improvements I experience on a gluten free diet, leaves no doubt I am dealing with a wheat allergy "at least." He said he was stopping short of calling it celiac because he wanted to spare me difficulties with insurance... that and a second endoscopy just makes no sense given everything else. I can live with the ambiguity, especially since I am feeling so much better most days. But I need to request a copy of the blood tests. I'd like to see the levels for myself. Anyway, I suppose it's time to move on to another part of the forum.
  7. Thank you. That is very helpful information. I get my blood test results back on the 15th. If they find nothing there, I will likely follow up with Enterolab. This past week I had further confirmation I am on the right track. I have been gluten free since November 25 and, on balance, am feeling better than I have in years. The energy is back, the tarry stools are gone, and I am not sleeping all the time. Then, this past Monday I had a rough spell where I had terrible brain fog and was dragging. We began to check labels of things I consumed during that time and, sure enough - I started an iron supplement that morning and I had failed to read the label. It included wheat germ extract. Needless to say I through the supplement out. I felt better by the afternoon and have been zooming ever since. Strange. Something that minor could render me incapable of working!
  8. Very helpful. I am learning more every day. "stool testing"? Never heard of it, but I will follow up on the lead. Sadly, the official paper test may be more necessary this side of the border. If the insurance companies do not see the diagnosis, they are not going to spring for the costs. Many thanks.
  9. Where can I find the most dependable information on diagnosis ... for myself and my family and for future conversations with my doctors. I'm beginning to realize I am going to have to advocate for myself whatever this diagnosis is.
  10. Love the dogs. Thanks. I am staying with the gluten free diet... at least for now as I am feeling better than I have in a long time. I would just like them to rule this in or out so I can attack the real problem and get on with my life.
  11. That is very helpful. The "95%" line confused me as well. From the reading I have been able to do in the last few weeks that sounds off the mark. I do not know if he ordered a full blood panel or not. I know I paid for two blood tests. One of them was for genetic screening. I am going to have to ask for complete print outs as these doctors want to talk in terms of positive and negative and I want to see the actual numbers. When I get more information I will post it.
  12. I am frustrated and confused. Allow me to explain. I am a 55 year old male with a history of symptoms that sound a whole lot like celiac disease... but more on that in a minute I had an endoscopy last week and met with the gastroenterologist today. Mind you, there was no blood test before this. I went from a conversation with my GP, to a visit to the GE, to an endoscopy. He told me he saw no signs of celiac and when I pressed for details said there were no signs of ulcers. He is a nice enough person, but he is not long on explanations and I strongly suspect he knows little about celiac disease. He told me genetic screening is "95% accurate" and sent me down the hall to get two blood tests. OK, here is a brief medical history... and the reason I am having real trouble making sense of all this. I was a sickly kid... ate like a horse but could never put on weight. Major leg cramps and fatigue. They kept me home from school for all of 3rd grade. I was extremely skinny until 40 at which point I put on a pot gut and 20 pounds and developed perpetual, non-stinky gas. History of debilitating migraine headaches, skin rashes, small blisters on the skin... There is unambiguous celiac disease in the family (nephew) We have autoimmune diseases in the family (mother, brother, et al. w/diabetes) 5 years ago I tried to donate blood and was rejected for having low iron. I also had severe constipation, some black stools, abdominal pain, low blood pressure, and a high white blood cell count. An endoscopy (no biopsy for celiac disease) showed nothing and after a few other tests my iron counts and wbc's bounced back into the normal range so they concluded I must have had some minor internal bleeding they could not find... inconsequential if it did not repeat. This past year I started to deal w/major brain fog, intense tinitis, fatigue, intense gas pains, burning between my shoulder blades, and constipation. To that point, believe it or not, I was clueless. I.e., I had no idea my symptoms resembled celiac disease. I had found ways of muddling through... but I began to realize I needed to find some answers and began to try to connect the dots between my diet and the intense brain fog incidents happening several times a week. Then things got worse. I had a stool w/blood seeping from it (otherwise normal), then 2 - 3 weeks of dark, dark diarrhea, foul gas... sharp pains in my stomach... sleeping 12 - 14 hours a day.... and there is more, but that's enough to give you the idea. Over the past month I have gone gluten free twice -- the first time as a self test. I cut it out again after the endo. Both times I began to feel better almost immediately. The pooping pattern is normal for the first time in years... gas is 80% gone... energy is back. I'm not 100% yet, but I'm getting there. So, I ask you. What is going on? I have laid it all out honestly. Am I misreading these symptoms? Do these doctors know what they are doing?