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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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  1. Today
  2. Not enough information to give an opinion, you need to get the full celiac workup if you have a set of symptoms that warrant it.
  3. I would suggest 2 slices of bread a day. A sandwich a day should keep you positive.
  4. Doing great! Been gluten-free for two years, now. No symptoms, antibodies are almost nil and certainly where they should be. Been glutened really bad twice (ate 4 slices of bread I thought was gluten-free once, and ate pasta I thought was gluten-free once) was in bed for three days each time and felt like crap for a couple of weeks. Learning experiences, not done that in quite a while.
  5. I'm not a doctor or expert but I've done a lot of reading and I believe anything that causes major inflammation for the small intestine can cause false positives for celiac antibodies. Sometimes people with Crohn's will have positive celiac tests as well. I wouldn't be surprised in the least that someone with a bad case of Giardia would come up positive. Now, eventually, as you fully recover from the giardia infection you should go back to normal levels but if you don't you most likely have Celiac as well. From what I understand, Celiac doesn't go into remission though it can be latent in people for years.
  6. Hey, happy to see your posting, Fenrir. I hope you are doing well!
  7. Well, you do not HAVE to get tested, but since Celiac Disease is genetic and you have kiddos, you should seriously consider the pros and cons. Take for instance, my hubby. He went gluten-free over 15 years ago per the very poor advice of his GP and my allergist. "Try giving up wheat and see how you feel." Well, it worked. No more sinus infections, feeling achy like he had the flu, etc. He seriously struggled the first year without a proper diagnosis, but eventually good health became more important than rye bread. Twelve years later, I was anemic (well I have been all my life) and went for a routine colonsocopy because all my friends were getting them (the perks of the over 50 club). During my GI consult he recommended getting scoped at both ends because he suspected celiac disease. I could not believe it! But blood tests and my biopsies proved that I had celiac disease. Hubby will be the first to say that I have had more medical, family and friend support with a formal diagnosis. He refuses to do a gluten challenge. His mom was diagnosed with MS and literally died from malnutrition, so we suspect she had celiac disease. He definitely has a problem with gluten. Thankfully, my dx has allowed for my daughter to be tested every few years (even without symptoms). She does not have celiac disease or any other autoimmune disorder yet. I say yet, because the gene pool for AI issues is huge on both sides. Good news is that cancer is rare but you never know. So, this is a decision you will have to make. An endoscopy requires a much shorter challenge. Something to consider. Gene testing too will help rule out celiac disease and might be the first thing to consider as you do not have to be on gluten for that. I wish you well!
  8. Everything you listed above very well could be Celiac Disease and not Sjogren's, but people with one autoimmune disease are at a higher risk of getting another one. Your GP clearly is working with old knowledge in regard to Celiac Disease. There are probably more people who suffer from constipation from Celiac than loose stools. I know for me I never had diarrhea at all, but I was backed up something fierce. I also had swollen joints, headaches, abdominal pain, memory issues, high liver enzymes, fatigue and general cloudy head. Not many of these are symptoms an uninformed Doctor would think to associate with Celiac. You really have to show up prepared to be your own advocate, tell the doctor that according to many of the GI specialists who work with Celiacs (see University of Chicago's celiac disease Center) these are all symptoms that warrant a proper workup for celiac disease. It took me 6 months, two biopsies and an unneeded surgery to get diagnosed and that isn't as bad as some.
  9. Here is a link that will tell you what each of the major celiac disease centers recommend. I reference this site because the woman writing it is a doctor herself who has celiac disease and is also a member of this site. She's done the research for us & put it all together in one post:
  10. Thanks for the input! cyclinglady - I've been trying not to be mad at my GP for ruling out Celiac at a time when I didn't know any better, but now I'm PO'd! Going back on gluten is going to suck. I was accidentally exposed last week, and I didn't go to the bathroom for two days, had my first headache in months, and wanted to sleep all day. Eight to 12 weeks sounds awful! I wish she would have done that test when she was taking blood by the pint for all sorts of stuff I didn't have. Blerg. ravenu5 - Thanks for sharing about your constipation. I didn't know how normal it was to not have diarrhea. But my constipation was also basically untreatable by normal means. I used to laugh when people suggested prunes. I could have probably eaten them by the bucket (though the most I ever tried at once was a dozen or so). I was so shocked when I started going to the bathroom regularly after eliminating gluten. The last time going to the bathroom wasn't an issue for me was when I was a kid! Gemini - It's nice to hear from someone else with Sjogren's! I haven't met anyone else in real life with Sjogren's, and I've never posted on a forum before. And thank you for being sorry about my miscarriage. It super-duper sucked. The miscarriage drove me to a third rheumatologist because I felt like I needed to know what was wrong with me. With two healthy, full-term pregnancies in the last five years and no history of problems, my risk of miscarriage was low, and I felt like the timing (all these new symptoms and the miscarriage) probably wasn't a coincidence. (But my kids have been a huge comfort. My youngest turned a year old the day after the miscarriage, and I feel so terrible for anyone who has to go through a miscarriage without a baby to cuddle. I don't know how it's done!) The first two rheumatologists I went to after my positive ANA and SSA said I didn't have Sjogren's! (Is there a space on this forum for doctor rants?) Anyway, Thank you so much for sharing with me. It's really nice to hear other voices on these things.
  11. blistex etc

    I use Blistex and I can tell you it's gluten free. I happen to use this one because I'm sensitive to sunscreen plus I just like a simple product without a lot of crud in it. BTW, here's a reference from Jan. 2014 where Blistex responded: Blistex: This company got back to me on January 31st, 2014. They said “…all of our Blistex lip care products are gluten-free; meaning that they are free from wheat, rye, barley, and oats.” Here's a link to the site which reported this. They list numerous other lip products as well.
  12. I was recommended to take at least 10g of gluten daily prior to the endoscopy.
  13. Yesterday
  14. Hello, So I've got a endoscopy schedueled on May 20th and my question is how much gluten do I need to be eating to maintain sensitivity levels? I found out 10 days ago that I potentially could have celiac. I had been on a pretty full gluten diet up until that night and then tried to cut it out for a few days until I found out more information. During my 10 days I have introduced gluten a couple times already. GI said to continue eating gluten up until the procedure. If I haven't really been on a gluten free diet, only a couple days here and there so far, how much gluten do I need to maintain for a proper biopsy that is two weeks away? Any info is appreciated. Thanks
  15. I haven’t found any large scale studies on this, but only a handful of individual case reports suggesting that in rare cases giardia can temporarily mimic celiac (both the serology & villous atrophy) until it is treated. I think this is a complex matter as giardia effects patients differently (most are asymptomatic whilst others suffer from chronic symptoms including malabsorption) for reasons that may not be well understood. In my case - My GI agrees that Giardia can directly cause villous atrophy that cannot be distinguished from Celiac. As the healing of the villi can be a slow process, I will schedule a repeat endoscopy 6-12 months after my giardia was treated. Ttg antibodies can also take 6-12+months to completely normalise, especially if the starting levels are high. 6 months would have elapsed at the end of this month, so will schedule a repeat test, hoping for a normal Ttg result to prove the theory. I have decided to remain on a normal gluten diet until it can be proven that I’m a celiac and not just suffering from a giardia infection. I have reason to be optimistic as my Gliadin IgA levels are negative (not iga deficient) and also given the sharp decrease in ttg levels 4 weeks after giardia was treated.
  16. Get ready, gluten-intolerant folks and celiac disease-sufferers: Now you can drink vodka without worrying. Stoli has released a line of “one of a kind” ... View the full article
  17. From wine to makeup, the venue was packed with all things gluten free. ... There were also plenty of non-celiacs at the expo, with problems too. View the full article
  18. It took all of 3 years before ALL of my symptoms resolved and it was the neuro ones that were the last to go. If you have been careful about your diet, then you may not be getting glutened as much as you think. It sounds like you have been careful because you are questioning things you should question to get clarification on. I am sure if you were doubtful, you would refrain from eating something until you know for sure. Neuro symptoms can last for much longer than other symptoms. Please be patient because my last neuro symptom was the one that took 3 years. Have you been tested for vitamin deficiencies? The B vitamins are important for neuro health, especially B12.
  19. With sufferers from celiac disease and carb-cutters alike uniting in a front against gluten in recent years, finding gluten-free dining options is becoming ... View the full article
  20. Week late aftershock!?

    I had a similar problem, I was glutened after a meal out at the beginning of April and am still experiencing problems, obviously not as bad now, but bad enough. I have also become intolerant to xanthan gum since, which cuts down the foods I can eat even more. I'm already intolerant to dairy, soya, and a whole lot of other stuff. Cyclinglady is right about the auto-immune disorders, and I've noticed I have similar problems to her. I too, eat easy to digest foods until the glutening symptoms pass. The sinus infection might also be a reaction to the glutening, it effects people in different ways.
  21. Thanks, I'll check out the information in the link. Do you remember how long you were on a gluten-free diet before your vertigo disappeared? I have been on the diet for 2 years, but I might be glutened from time to time since I am not an expert food label reader. My dizziness still persists.
  22. Thank you, Arlene, for making tea come out my nose! I should have known not to read your post while drinking......
  23. 11 years gluten free, I have never been glutened by natural flavorings. I know some of the older literature on Celiac says it may contain gluten but they rarely do. For more info, I have put in a link that briefly explains how it works with labeling for those. The link is dated 2013 but I have yet to read any updates that list any pertinent changes to this. It will take a few years or longer for a person with Celiac to really learn how to read a label to the point where they feel comfortable with eating that food but I guarantee you'll be a food expert! As to your other question, yes, Celiac most certainly causes balance and neuro issues. I suffered from extreme vertigo for years, which disappeared after being on the gluten-free diet for a while. I had no idea it was connected to celiac disease but it completely disappeared on the diet. I also never had anxiety issues but now, on the rare occasion I sustain a hit, the anxiety is bad. It disappears after about a week. This is well know to Celiac's but many doctors still don't get all the symptoms we suffer from, that are related to gluten ingestion. Frustrating!
  24. SugarCube, I saw your other posting today. I can not believe that I missed your original posting! Maybe I was doing something super fun that week (oh, my parents were visiting!). Your celiac blood panel was positive and you had intestinal damage that was caused by both celiac disease and Giardia? After treating the Giardia, your CD resolved or went into remission? Are you consuming a diet containing gluten still? Have you had a follow-up biopsy? I read your link to the study, but that feature just one patient (a child). Have you found any other larger studies? Inquiring minds want to know!
  25. Week late aftershock!?

    Remember, celiac disease is an autoimmune disorder like lupus, MS or R. Arthritis except the trigger for a flare-up is known -- gluten. Unfortunately, no one knows what causes lupus or MS to flare-up (lots of theories, but no definitive answers). For some celiacs, a flare-up is just a day or so. For others a week or months! I can vouch for months! My antibodies were sky high after a glutening last summer six weeks after the occurrence. I also became lactose intolerant for three months! I was so bummed! Plus, my symtoms were so different from when I was diagnosed. I am sorry that you were glutened. I hope you feel better soon. Oh, I tend to alter my gluten-free diet to include soft easy-to-digest foods after a glutening. Maybe this will help you.
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