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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. 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.
  2. Thank you, Arlene, for making tea come out my nose! I should have known not to read your post while drinking......
  3. 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!
  4. Yes, you absolutely need to be tested for Celiac! Sjogren's seems to be another close friend to Celiac, unfortunately, and if your SSA was positive, then you have Sjogren's. I have both diseases and found myself that my Sjogren's symptoms calmed down once I had been gluten-free for awhile. I still have moderate symptoms but they were almost unbearable pre-Celiac diagnosis. The fact that your symptoms greatly improved on the gluten-free diet speaks volumes and should be looked into. I am terribly sorry about your miscarriage. That has got to be so tough to deal with. Miscarriage is another problem that can occur with Celiac because of the vitamin deficiencies and other reasons. It is very important for you to rule Celiac either in or out if you want to try and have children. Good luck and if you have any questions, feel free to ask away!
  5. You are misunderstanding the term hidden gluten. A food item, of which probiotics are not covered under, can legitimately have trace amounts of gluten and still be gluten free. There is no test that can test down to zero, regardless of what you hear. Most testing generally tests down to 5ppm and the vast majority........ most likely 99% of Celiac's, will not have an autoimmune reaction to the food. I am an extremely sensitive, diagnosed Celiac and I eat some processed foods, from reputable companies, and I am doing phenomenal, 11 years gluten-free. Lots and lots of other people have this experience also. This is not an example of hidden gluten. There can be food ingredients that may be made from a gluten component that may not be as easy to distinguish but if you learn label reading as you should, with time you will be easily able to identify what is safe or something that is questionable. Can it be daunting at first to learn all this new information? Absolutely, but if you can read, you can learn. There are also many probiotics which are completely safe. I have been taking them for 30 years and have never been glutened once from them. The news reports (for what they are worth now) say that there was gluten discovered in probiotics. That does not mean all probiotics are suspect. You can find out from the Gluten Free Watchdog which ones failed and which ones did not, then make your choice to buy. Supplements are not covered under the food laws but those labels and check with manufacturers! This is a pretty good page that explains it well.
  6. It can be difficult to refuse food from others but, with time, you can learn to not let it bother you. Yeah, easier said than done, I know. But your sense of humor came through in places in your post so use that to make "empowered no BS responses"!
  7. This is a common sense answer! I used to eat Godiva years ago and was dismayed they had no interest in appealing to anyone with a food allergy/intolerance. That's OK......Ghirardelli chocolates are very good about divulging what they do and most of their chocolates are gluten-free. Again, you have to understand label reading and investigate further, if need be. Turns out, I think their chocolates are just as good, if not better.
  8. If a food product contains wheat, it must be labeled by law. I have been gluten-free for 11 years and have found that this whole concept of hidden gluten (aside from cc) is really not quite true. You have to learn how to read labels correctly to identify what is in the food you are eating. If in any doubt, do not eat the product until further inquiry is made. Rashes happen for many different reasons but they do seem to occur more frequently in those with autoimmune or allergy problems. Those would probably be the 2 main causes of them. It can be incredibly hard to figure out and doctors are not much better at helping. This is why my 89 year old MIL is trying a gluten-free diet because she is having rash and itching problems that are driving her crazy. No help whatsoever from doctor-land. They just keep feeding her prednisone and that is not a good choice for anyone, never mind an 89 year old. It's a wonder any of us get the help we need!
  9. Hives can be caused by so many things but primarily, it's either allergy related or autoimmune related. You can have autoimmune hives which can result from having one or more AI diseases. I get hives but mine pop when it gets warm and wet......I am severely allergic to molds. They just about appear and disappear quickly, if the weather goes from wet to dry. I use Benadryl to keep them from getting too bad, when needed. I also use children's Benadryl because it works just as well as the adult formula but makes me less drowsy. You can be more susceptible to environmental allergies when you have Celiac. Is this a problem for you and your sister?
  10. The clues keep mounting, don't they? If more docs paid attention to all this, they wouldn't be complaining about how many people go undiagnosed! Part of the problem is the medical attitude.
  11. Although Hashi's can raise tTg levels, usually it's a lesser increase than a 124. I have both Celiac and Hashi's. would not be a false positive at all. You either just have Hashi's or you have both Celiac and Hashi's. Seeing as Hashi's occurs frequently with Celiac, you need to eat that awful gluten for testing. Also, Synthroid may not be the best choice for treatment with someone who has autoimmune thyroid disease. Very often, many find that treating with both T3 and T4 hormone works the best at taming down those symptoms. If you are still symptomatic after treatment, they need to test you for your thyroid hormones, T3 and T4..which very often they do not. They go by the TSH, which is not the best choice for monitoring your levels. You could also have celiac and not be absorbing your meds well. Something to keep in mind.......good luck with testing!
  12. Yes, everyone has the right to monitor their diets as they wish but keep in mind that many companies have shared facilities and do a good job to prevent cc. It is not an assumed automatic that food has been cc'd just because they are made in a shared facility. Lots of Celiac's find companies they can trust, who do not make them sick, without being certified. I assume you never eat in a restaurant or in other people's homes if gluten is present anywhere on the premises?
  13. ANA and Celiac

    I will also add the ANA can come down with long term adherence to a gluten-free diet. I have 3 other AI disorders, along with Celiac and 11 years ago, at my Celiac diagnosis, my ANA was 1:2560 and the last time I was tested in 2013, it was 1:320. Lower the inflammation and numbers go down!
  14. With blood results like these, your husband most definitely has Celiac Disease. The biopsy is just to check to see how much damage. Keep in mind that even with high, high test scores like these, damage can still be patchy. Although I would be very surprised if they didn't find enough with numbers like these! Thank goodness he was able to have a definitive diagnosis and reason for his symptoms! Good luck!
  15. Lacie, a few comments on your test results.............while they are certainly not what doctors like to see when trying to rule Celiac in or out, they tell a little story . The EMA test was positive and you should know that no other disease will cause a positive on that except for Celiac. When you have a positive tTg and a positive EMA, that is pretty much a slam dunk for Celiac. You tested borderline on the tTg back in January and it would not be highly unusual for that to test normal now. Lots of folks never trip an antibody test but still have full blown Celiac. There was little difference in your tTg levels so that is not a reason to rule Celiac out....especially with a positive EMA. The EMA is expensive, has to be done manually by a tech and makes use of immune-fluorescence so it is not likely to be a false positive. You also have Hashi's thyroid disease and that, along with Type 1 diabetes, are the 2 top associated conditions that occur frequently with Celiac. Then you have your positive gene testing. Doctors rarely take into account associated conditions you may have or any other clues like vitamin deficiencies. Having a low Vit. D doesn't necessarily mean Celiac as many people living in northern areas may have low Vit. D from a lack of sun. Even if the biopsy is negative, I would still do a strict dietary trial. There still is a very good chance you have it, with your history and medical test results. I also have Hashi's thyroid disease and they blamed that for everything that was wrong with me. I ended up figuring it out myself and requested the testing that they never offered. Of course, 30 years ago, no one was looking for Celiac but I wasn't actually diagnosed until I was in my mid 40's. Good luck!