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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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About Gemini

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  1. 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!
  2. 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!
  3. Yes, I agree with cyclinglady. Think of it this way......Celiac Disease can cause ADHD, anxiety and the list of other issues your son has suffered from. ADHD is not a diagnosis of anything. They are symptoms and most doctors symptom treat by putting these kids on meds, which makes me crazy. No 9 year old child should have all these adult problems so there is an underlying cause to it all. So many people have come onto this forum and told their stories of horrible symptoms such as these and then after going gluten-free, over time, they all disappeared. Even myself, who never had any anxiety issues ever in my whole life, will have 2-3 days of severe anxiety if I take a gluten hit. I have not been glutened since Sept. of 2014 and that was the last time I had any anxiety issues. There is most definitely a connection!
  4. jenn....did they ever do a complete Celiac panel? If not, then they haven't done enough to rule Celiac out. A negative biopsy does not rule it out, either. I say this because all the symptoms your son has and has had, both gastro and neurological, scream of gluten intolerance on some level. I would not rule out Celiac or NCGI just yet!
  5. Check out this thread: I am not sure if gluten-free oats would keep tTg elevated. I tolerate them just fine so have no experience with this. Has your daughter been tested for other AI diseases that would cause tTg to remain elevated? Have they repeated the DGP along with the tTg?
  6. Yes, jenn....thrush can be common with Celiac. I had thrush problems for years and it never truly resolved until I discovered the Celiac. I would follow the anti-candida diet and take meds but it always came back, until I went gluten free. All the good gut bacteria that keeps yeast and other organisms in check are not usually there when a person has Celiac or eats a poor, processed food diet. So, the bad bacteria run amok and you end up with thrush. It can also happen with repeated antibiotic use because antibiotics wipe out all the good bacteria, along with the bad. You are an RN so get what I am saying. Did they prescribe anti-fungals? Poor can be painful if it gets bad enough.
  7. I spoke with my co-worker this morning and he was only too happy to help! The name of the medication he takes is Promacta. It is a synthetic protein that stimulates the production of platelets in the bone marrow. It is not an immune-suppresant, which is always preferable. We are in the United Sates so what is available in your country may be different. It is also insanely expensive, as meds are in the US, but our insurance system covers the cost....or at least the insurance we have through our work covers it. It can be complicated here. You may be able to get this where you are and it will probably not cost as much as you have a different system. The other medication is called N-Plate and that is an injection you have once a week. That kind of limits you traveling because you have to make sure you receive this injection once a week. I believe this in not an immune-suppresant either. My co-worker did not use this because he likes to travel and that would have been problematic for him. These are 2 options and there are more. He suggested you go to: Have they pestered you about removing your spleen? Don't sweat any mistakes you make with the gluten-free diet. We all do in the beginning. I also see why you may just opt to go gluten free without a definitive diagnosis. You are between a rock and a hard place and the wait times for an endo can be long. I would go gluten free myself if I were in your shoes because it is important. ITP is an associated condition to Celiac because it is an autoimmune disease. You have the ability to trip for other AI's with Celiac, if you are still consuming gluten. Don't get me could trip for more AI disease even being gluten free but the odds are much slimmer. I have 4 AI disease in total and I believe it's because my Celiac diagnosis was missed for so very long. I am happy to say it's been 11 years gluten-free for me and I have not had any more rear their ugly heads.
  8. Sorry....I just don't buy into this hype that many Celiac patients do not heal. I have been doing this for a very long time and have seen a lot over 11 years and am surprised how people "follow" a gluten-free diet. If you do it right, then you should heal, unless you have underlying problems or don't fully understand how to do the diet correctly. Being glutened once in a great while will not keep you from healing, either. I see many Celiac's cheat and then wonder why they do not feel good. My new doctor, who is very well versed on Celiac to my surprise, gets really annoyed because she says many patients are either not compliant or fail to learn how to follow the diet correctly. I also see this with the diabetic population. Lots of cheating going on and poor dietary habits which they think can be remedied by more insulin. The protocol you quote is one that every person should be following, not just Celiac's. Healthy eating of whole foods, with some carbs/processed foods thrown in. I do eat some processed foods because, as a classic Celiac, I am thin and can always use a few extra pounds. I cannot be that lucky that I am magically avoiding all these so-called contaminated foods. I know they exist but I tend to buy very mainstream brands, from reputable companies that do a good job of keeping their food clean. You do have to be careful but that's where education comes into play and experience. I have not been glutened since Sept. of 2014 and haven't found that hard at all. I also do not eat out that much and have found that's where you are most likely to be hit, not from packaged foods. You know how I got glutened? Like you, it was a convenience thing. I got hit by a salad from a restaurant. I ate out because I was leaving on an international trip the next day and there was no food in the house. I thought a salad would be safe.....but not from Wendy's! It was the only fast food place I ever went to because they had salads. Never again! I was able to eat some processed foods from good companies while early in the diet because I had to. I was 20 pounds underweight and it is really hard to gain weight on a whole foods diet. But, my experience is that many of the processed foods out there are safe for us but you have to make sure you pick good, mainstream companies. Do the research, as you should do. If that many companies had contaminated foods, no one would heal. But many, many people heal well so there are more things at play here than just saying processed food is contaminated. When food and special diets are involved, people get very emotional and don't always do what they should.
  9. The doctor should be doing a full Celiac panel and not just a tTg. If a full Celiac panel is done and the tTg and EMA are positive, then a biopsy is not needed for confirmation. However, in minor children, doctors do not follow this protocol and seem to want to insist on a biopsy. I always felt it depended on blood results and symptoms in order to have a biopsy done. I had the full Celiac panel, failed all the tests by large numbers (close to what your son had) so refused the biopsy. I was too sick anyway to do one but there was no doubt I had Celiac Disease. Your son is feeling about what many people feel when their tTg is still that high. Six weeks is just the beginning of healing so he has a while to go and it still depends highly on the person. I was so sick that when I went gluten free, I started to heal immediately and the extreme gastro symptoms cleared up relatively fast. I was able to return to work after 1 week but was still tired for awhile, until the anemia resolved. I was still able to function well enough at work, though. If you want to have a biopsy for your son, then continue to feed him at least 1-2 slices of wheaty bread per day or the equivalent until he is scoped. Although, I think a doctor would have to be an idiot to not recognize Celiac in a person with a very high tTg like this. Don't worry....your son will heal well because he is young but do give it some time after the testing is complete.
  10. Chiachick.......yes, prednisone can skew Celiac testing because it's an immuno-suppresant and you are looking for antibodies in the blood work. They even use prednisone to treat refractory Celiac. It should make some of your Celiac symptoms calm down or go away temporarily but that is not optimum, is it? You want answers. From your history and that of your children, plus your ethnic background, I would say you have a very high chance of having it. As I was scanning your post, I kept thinking how much like a Celiac your symptom list reads. Add to that ITP, which is an associated condition. My co-worked has ITP but he was older when diagnosed and the docs aren't even looking for Celiac. Shameful. Have you been offered other treatments for this? I am in the US and there are a number of treatments available instead of prednisone. Here is one which my co-worker had done because he did not like the side effects of prednisone...... They had him on a much larger dose than you and he only did that for a short time before he said enough of that! The IVIG treatment worked pretty well but he ended up having about 3 in total, over time, because they don't last forever and they are very expensive. Insurance covered them here but you are tied up for a day being infused and if you have any major stress in your life or catch a virus, it can crash your platelets, which is a common thing with autoimmune disease. Then you get to have an emergency infusion to pump those platelets up. He is now on a medication that causes your bone marrow to pump out a lot more stimulates production in the bone marrow so, even if your autoimmune system keeps killing them off, you still have a decent amount because of increased production. He is happy with that one as there is no need to be on immuno-suppressants. I can get the name of the medication for you, if you have an interest. His platelets usually come in at about 65,000, which is good for a person with ITP. Personally, I firmly believe that underlying Celiac Disease can be one of the causes of ITP. I would see what happens with your kid's testing because if they do have Celiac, then it's looking pretty good that you may have it also. There is probably a Celiac gene in there too. If you have any other questions about ITP, feel free to ask. I hate to see you play Russian Roulette with your health and platelet levels by keep going on and off the diet. If you cannot get answers for Celiac, then consider going strictly gluten free anyway. If your platelet levels improve and you stabilize, then your body is telling you something important. I hope you feel better soon!
  11. Karen......I know this is an older post you made but I wanted to make a comment on what you said in this paragraph. MS would not raise Antigliadin antibodies in someone as that only elevates with Celiac Disease from the gluten you are eating in your diet. What it might raise is the tTg numbers as MS is an autoimmune disease and tTg can be elevated by some AI diseases other than Celiac. Your tTg was normal. Good luck with the testing results but I think you know you must eat gluten free. You could very well have NCGI and that will give you the same symptoms without the villi damage. Whatever happens, stay gluten free and I bet many of your symptoms will subside!
  12. armour thyroid

    I have yet to find any thyroid hormone that does contain gluten. I know many believe that Synthroid is not gluten free but I think the problem lay in the fact that the company will not label it as such or verify it directly. A CYA statement. I use Nature-throid, which is almost the same as Armour. Contains both hormones and both are gluten free. You can ask to read the insert in the med package from the pharmacist to see what the ingredients are also. But calling the company is a good option!
  13. OK......after looking at all the links and reading the labels on the products, I have to play Devil's Advocate here...which I am sure will surprise no one. Am I outraged? That's a little too far up the anger spectrum for me. I guess I look at things differently than many. This annoys me, it truly does, and no one should be able to label something as gluten free if it contains an ingredient that cannot be in there if it is supposed to be gluten-free. However...........after reading the ingredients list on all the packaging, it was clearly plain to me it was not gluten free and I would have put it back on the shelf. Probably call the FDA, for whatever worth they are, and lodged a complaint. This will happen and this is the main reason why you have to read labels each and every time you purchase something. My other annoyance with a segment of the gluten-free crowd is when diagnosed with Celiac Disease, it is essential you buy one of the great books out there on the disease and educate yourself. That means learning how your GI tract works and how to eat gluten free correctly. I don't care how you do it...whether you read or talk with a reputable dietician, just do it. No excuses! If you do this, then you will be able to easily tell what is safe and what is not. Is this way infallible? No, nothing is, but its as close to perfect as it gets. This disease, like diabetes and others, relies heavily upon personal responsibility and knowledge. There are many scams in this world but if you pay close attention to detail, which the ingredients list would fall under, your answer is there. If still in doubt, don't eat it! Does this let companies off the hook? No...but it sure beats being glutened all the time because people aren't paying attention. You cannot just look at a gluten-free label because it's easy and grab and eat. We don't have that option. My guess is that the companies involved are ignorant about Celiac Disease. They see all this testing protocol involving numbers and think if they bring those numbers down to acceptable levels, we can eat the barley malt. Duh! And you know some people will and that's why their products sell. The "anal about their food" Celiac's who actually strive to be as gluten-free as possible like all of us, are a small minority and that's fine. I read labels and figure out myself if something is safe to eat and it has worked well for me for 11 years. I won't even comment much on the "sour dough bread that is safe for Celiac's to eat" nonsense. I know it's hard for some people to change the type of bread they have eaten their whole lives but it can be done without ruining your life. I figure the diagnosed folks who are still very new to the diet only have to eat it once and get really sick before they learn what utter nonsense that is. Or they will be smart and come on here and ask. There is no money in treating Celiac Disease yet so no respect or interest. That will change when Big Pharma produce the "cure"! Then, we'll be all over the news.
  14. United Airlines Club Lounge

    I have only had great experiences at the Virgin Atlantic Lounge. They have a great menu and offer some things that can be done gluten free very easily. Never been sick from anything I've eaten there and I'm very sensitive. I think that American carriers are very different than their European counterparts. You get much better food and most people there know what's in food and what gluten is. We have a lot of catching up to do! I think a nice letter outlining your problem, maybe from a lawyer, will do the trick. You just have to push the right people around......... Good luck!
  15. With positive blood results and anemia, this is most likely Celiac Disease. Your doctors are just behaving as doctors do and hinge everything off of the biopsy. I hope they find evidence of Celiac after all these biopsies because then you can get on with your life and get rid of that anemia! If not, then its just another case of patchy damage they have not hit the sweet spot on. I hope they do not tell you to continue eating gluten when clearly, you need to avoid it. Good luck with all the results!