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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 FREE Celiac.com 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 Celiac.com Store.

Gemini

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  1. I work out regularly and I would say NO to working out if you have been glutened or are really tired. You know what happens to people who work out when they are really fatigued? They suffer injuries. I was not well enough to work out until I had been gluten free for 4 years but I am much older than you so I doubt it will take 4 years for you. Drop the work-outs for now and just go for walks outside when you feel better. The fatigue has to be better before you try to do gym work. I know you didn't want to hear that but I don't want you to end up injured, on top of everything else. Take care of yourself for now and let yourself heal!
  2. Truer words were never spoken.......insurance companies operate like Ponzi schemes. I know there are times when a person really needs insurance but navigating their ridiculous policies is enough to make anyone go crazy.
  3. Welcome, Caro! As I told another poster (Gertrude) the other day, no other disease but Celiac Disease will cause a positive EMA. Why is it that many docs don't seem to grasp this? As for your tTg/IgA numbers falling a bit, thyroid disease will also affect that particular test. So, if your thyroid function has improved since the first testing you had done, that could account for the lower tTg number. I also have both Celiac and Hashi's so my advice comes from experience, not from a medical degree. May I ask you how they treated your thyroid without thyroid hormone or surgery? I find it odd that someone would recommend surgery when that is what you do for Graves Disease or hyper thyroid, as it is often called. You say that your thyroid function improved but with Hashi's, that usually does not happen without using thyroid hormone. If you are new to Hashi's thyroid disease, then the gluten free diet may help to the point where you do not need thyroid hormone. Mine was too far gone from long undiagnosed Celiac so I am on hormone replacement for life. Not a bad thing......I am glad they have good replacement hormone choices. BTW...I do not take synthetic hormone like Synthroid. I use natural thyroid hormone which contains both T3 and T4 hormone. Worked much better for me. Lastly, both Hashi's thyroid disease and PCOS are often seen with undiagnosed Celiac. Both are associated conditions so your other health issues are clues to the whole picture. Good luck with the docs but from what I have read here, you sound like a bona fide Celiac to me!
  4. Although this was an incredibly informative and great post, I only took exception to one thing you said and that is what I put in bold lettering above. Eating gluten free is very healthy, if done correctly. The Western American diet is very unhealthy but it doesn't have to be either. If you feel badly after being on the gluten-free diet for awhile, you either have an intolerance or allergy to something you are eating or you are not eating the right foods....gluten-free or not. I am glad they found out you had Celiac, even though most people do not want that news. The things that can happen from going a long time undiagnosed are not pretty and can cause more grief than Celiac itself.
  5. Gertrude.....just a few comments after reading your posts..........no other disease but Celiac disease will cause a positive on the EMA test. I have never heard of a false positive on that either. It is a test that is done by hand and not by a machine because of the way it has to be done, so having a false positive is almost impossible. Your doctor should have known that. Many people trip just 1 or 2 tests on the panel and they have Celiac Disease. With autoimmune testing, you can test 2 different people with Celiac Disease and they can have wildly different test results. Couple those with a positive gene test and the likelihood of it being Celiac is almost 100%. The fact that the doc didn't find villus atrophy just means the damage is not extensive enough for them to find.......yet. I am sure they would prefer you to keep eating gluten until that happens but you do not want to do that. So.........after you have been gluten-free for awhile, have them run the Celiac panel again to see if your EMA goes to normal, which it should if you eat very gluten free. With positive gene results, positives on your Celiac antibody testing, and positive dietary response, that is a diagnosis!
  6. I have always noticed that the table wine in Europe is pretty damn good! I am a wine lover and so is my husband but he does like his Green's beer.
  7. The reason they set the limit at 20ppms is that through scientific study, they have proven that the vast majority of people with Celiac Disease do not have an autoimmune reaction to amounts below that......it is a safe limit for most. Also, just because that limit is set at 20ppms, does not mean that gluten-free products contain that amount of gluten. Testing for lower levels becomes more expensive with each increment down closer to 0-5ppms, which translates into higher priced products. Unless you eat a lot of processed gluten-free food, which can have a cumulative affect for some, most people do well with the 20ppm limit.
  8. WHAT??????? No Green's beer in Belgium????????? Do they export all of it? My husband loves Green's beer and says it is the only decent gluten-free beer made. He's tried quite a few but none of them compare to Green's. Thank you for this detailed report. Sounds like you had a lovely time. Happy Belated Birthday!
  9. Anyone who is still young should be able to recover bone density without taking those horrible meds they like to push on people. You still have your hormones, which play an instrumental role in bone formation. Getting plenty of calcium, magnesium and Vit.D and K2 is a good place to start and then do weight bearing exercises for good measure. For women, you need to weigh at least 126 pounds to make bone on your own and for men its around 145. Anyone weighing less than that should absolutely be exercising on a regular basis to make up for the lower weight. I stopped the progression of my osteoporosis in my spine by doing weight training. It hasn't gotten better, that I know of, but has remained stable. I will not take the meds because too many doctors and dentists told me not to. They see the side effects from them, plus the side effects are more serious in younger people......meaning anyone under 75 years old. They are probably warranted to take if you are 75 or older because losing bone mass really accelerates at that age, if you have the problem. But if you are under 40, don't sweat it. It's that youth thing....you can inflict abuse on your body and it still bounces back!
  10. Yes, 2 slices of bread per day and sandwiches should be enough to test correctly. I would hate to have you get really, really sick because you ate more gluten than needed for testing. But keep it up and make sure to eat that amount every day....as hard as that is, I know. Your other symptoms are all symptoms of Celiac and if the diabetes your mother has is Type 1, that is the one that is autoimmune and highly linked to Celiac. If you failed the complete Celiac panel testing by high numbers, then that should be enough to diagnose, with the symptoms you are having, but if they only did one antibody test, then the endoscopy might be demanded before they give you a diagnosis. However, damage can be patchy so it has happened that people can have a negative biopsy even with active Celiac Disease. This is why it is best to have as many samples taken from different parts of the small intestine as possible. Be pushy about testing and don't let them make you wait a long time. That really is unacceptable. Would it be possible to have them do a full Celiac blood panel on you? I forgot to add that you need never apologize for posting here. We are here to help so ask as many questions as you like.
  11. Type 1 diabetes and Celiac share the same genetics...they are both a DQ-2 gene. Different alleles on the gene strand but they are like cousins in the gene world, if I understand the explanation correctly. This is why Type 1 diabetes is one of the bigger AI diseases that occurs more frequently with Celiac. It does not mean a Celiac will end up with diabetes but the risk is much higher. If you follow the gluten-free diet well and do not cheat, I think it lowers your chances of tripping for it. My brother's granddaughter was diagnosed with Type 1 last year at the age of 16 so now she will be tested regularly for Celiac. Her mother, my brother's daughter, has Celiac also. Genetics can just suck sometimes.......
  12. I have never heard of night sweats being a symptom of diabetes but they can happen with undiagnosed Celiac or the newly diagnosed who have not yet healed. Celiac really screws up all your bodily functions and hormones are usually the first target....like thyroid disease. You are far too young for it to be menopause. But many people have complained about this symptom so give it some time as they may go away once you are feeling better and your body is working well again. I am glad you are seeing a nutritionist so hopefully, they will order a blood sugar test. I wouldn't get all worked about diabetes, though. Sometimes all these symptoms are just from Celiac and they will eventually go away once your body starts healing. If I can heal well at my age, you will too!
  13. Hi Kathleen.....the sentence above caught my attention. If you are still having these symptoms, you really need to have your blood sugar checked, STAT. These are signs of diabetes. I am not trying to scare you but my brother was a Type 1 diabetic and he was diagnosed when these very symptoms drove him to go to the doctors. Something to keep in mind if this keeps happening. Good luck with your veterinary studies. I love animals too and they are my favorite.....all that unconditional love they give.
  14. Emma.........I also have Reynaud's. It did improve on the gluten-free diet so symptoms are not as severe as they were when I not diagnosed with Celiac. Remember....all this BS is caused by too much inflammation in the body, which the root cause of is Celiac. Tame down inflammation with the right diet and symptoms lessen for everything else. That was my experience. Sounds like you have a good doc because they never look for Sjogren's. I had to figure it out myself and then testing proved me correct, unfortunately. My feelings on meds is if your symptoms are bothering you tremendously and impinge on living a normal life, then you can talk to your doc about it. I do not like taking meds and have never bothered with them. I have severe symptoms too but it's been like this for so very long, it is my normal. Symptoms can be mild to severe and it's up to you what you decide to do about them. I treat symptoms myself and use the Biotene line of products to help with the dryness in my mouth. Biotene mouthwash is fantastic........it has a really clean minty taste without being overpowering. It's very soothing on your mouth because it contains no alcohol, like most mouthwashes do. It's specifically formulated for dry mouth symptoms. For my very dry eyes, I have to use Restasis eye drops (Rx). I tried going off of them and my eyes got really bad so I have had to accept using them probably for the rest of my life. They work really well for me, which is good because I hate using them. There is no pain with it but annoyance that I am dependent on them for better eye comfort. I would also suggest regular exercise to help with the circulation issues. I must admit, I do not go to doctor's all that much. I do not go to Rheumatologist's because they all seem to push meds. I also do not want to spend the rest of my life jumping from one doc to another. When you have multiple autoimmune problems, they want you to see someone for every problem. I find that eating really clean and healthy, regular exercise, and trying as hard as one can to mitigate stress, goes a long way to me feeling good. But if you need to take something because of your symptoms, then do what you need to do for comfort. Everyone has their own level..... Please keep us updated. It is not often I meet another person with, potentially, the same AI problems I have. If you ever develop Hashi's thyroid disease, we would be identical AI twins! Sorry for the humor but sometimes you have to laugh about it or it drives you crazy. Good luck with your testing!
  15. The vaccine does not prevent you from getting shingles, it just keeps it from hitting you as hard. I do not think insurance will even cover it unless you are 62 years or older.....unless that has changed. My doc did not recommend it when I had the problem. She had many patients who got the vaccine and then ended up with shingles down the road. There is no guarantee with it. Shingles are caused by stress and being run down....even if you don't feel run down. It is becoming very common in young people and the doctor who initially saw me when it happened was very young and said it is NOT a problem of aging. Many doctors, including herself, popped with it while in med school because of the crazy schedules they do. The best way to prevent shingles is not to let yourself become run down. Get enough sleep, eat well and try to mitigate stress.......ha, ha....like that is an easy thing to do sometimes. Mine happened after I started absorbing better with my thyroid hormone. I went hyper-thyroid so bad and they told me to stop thyroid hormone for 4 days, then they would readjust the dose. Well, trying to find the correct dose after healing is not easy and I went from hyper to hypo and BAM! Shingles. It's been 8 years and nary a sign of them. I was lucky in that I did not have much pain with it and thought it was from taking the anti-viral so quickly. I hope that is your experience, Raven, and the pain goes away quickly!