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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. Hello Jules, Her tTg/Iga is very, very high and that will not occur from just the diabetes alone. Since Type 1 and Celiac share the same genetics and can occur together, it would be great if she could have the complete Celiac panel run and not a partial. I do not understand the test for Immunoglobulin so cannot comment on that but her tTg is concerning for Celiac. With her symptoms, she should be fully screened for it, along with your other daughter who has Hashi's. I also have Hashi's and that's another one that likes to pair with Celiac Disease. Tests in the full panel include: tTg/IgA and tTg/IgG- Since your daughter's tTg was sky high, the IgG version of testing usually done may not be needed. DGP/IgA- This tests for reaction to gluten in her diet. This is usually repeated with the tTg annually for dietary compliance, if she is diagnosed with Celiac. EMA- This test is usually not done unless the tTg is positive because it has to be done by a technician and not a machine and it is expensive. However, it is VERY important in a panel because if it is positive, then coupled with a positive tTg, pretty much is diagnostic for Celiac. The GI will want to do a biopsy, which is usually indicated for kids or young adults. NO OTHER DISEASE WILL CAUSE A POSITIVE EMA BUT CELIAC DISEASE. Total IgA: This is done to make sure a patient produces enough IgA antibody for testing purposes to be relevant but it will not be needed for your daughter. Her tTg number proves she makes enough antibody. Good luck with testing and make sure she keeps eating gluten until all testing is completed!
  2. I couldn't have said this better!
  3. What would be helpful, Victoria, is to have a full thyroid panel done because you cannot diagnose anyone with Hashi's without a full panel. It is more important to see what the actual hormone levels are than the TSH. Those would be Free T3 and T4. You can have low hormone levels and normal TSH. Your TSH is not too bad but if it starts to climb any higher, that would be cause for concern for Hashi's. At least your lab seems to use the newer ranges for testing. Many labs use outdated ranges that go to 5.00 for a cutoff. When my TSH was a 7, I could barely drag myself out of bed in the morning. I have Hashi's and your symptoms are a laundry list for it and Hashi's is very common with Celiac Disease. You can start having Hashi's symptoms long before the blood work goes off.......like Celiac.
  4. With the 3 positives that you have, Jenna, you have Celiac Disease. Positive tTg and EMA is a slam dunk. At this point, if you do the biopsy, you don't need it for diagnosis. It will be to check for extent of damage. Considering your health issues, it's pretty apparent you have a gluten problem anyway. Congratulations on figuring out your problem. Now you can sit back and watch how amazing it will be when many of your problems resolve or improve dramatically. I had the same positives you did and declined the biopsy. 3 years after I was diagnosed, all my symptoms were gone but I do have other AI issues which are not, but they are much, much better just from going gluten free. Be optimistic this will happen for you also!
  5. These 2 tests are basically the same test except the newer version, the deamidated gliadin test, is more sensitive than the older version. Both tests are valid and very useful when included in a Celiac panel. I was diagnosed via blood work using the older test as I was diagnosed 12 years ago. But I have both tests run when doing antibodies every once in a while to check to see where they are. Both test for reaction to gluten that you are eating so the high number you got is definitely NOT a false positive. I am glad you are getting a new doctor because this one scares me with his lack of basic knowledge!
  6. Is it possible you have a lectin problem? The veggies you listed above contain large amounts of lectins and they are known to cause severe joint pain in those who cannot tolerate them.
  7. I am sensitive also and take this diet very seriously but there are people like Jane Anderson who say things that no Celiac organization would back up. Just plain crazy stuff. Regardless of whether you have DH or are a sensitive Celiac, no one should put themselves into a bubble to live. Mental health is just as important as physical health. As for the hives, I have the same hives problem although they do not cover my whole body. Do you have seasonal allergies or the dreaded mold allergies? Because that can play heavily into a hives problem. Mine were not bad until I had 5 deaths in my family over 2 1/2 years. Then they became really bad. I started sublingual allergy treatment about 2 years ago and now, the problem has dramatically improved. It is the mold that does it and the emotional stress of grieving didn't help. On a humid day, I can watch the hives appear and then when the air dries out, they magically go away. But they are far less dramatic and I get only small patches of them now. The allergy treatment seems to be working even given the fact I have 4 AI diseases. Hives are horrible and like you, I was not content to hear that the docs have no idea and you may have to live with them.....I don't think so! I think for many of us, it is a combination of factors that cause hives. But it does take a while to figure it all out.
  8. I would have to agree with these statements although I think Jane Anderson rarely has good points to make. She who thinks everything is contaminated and gives people the impression Celiac's need to live in a bubble.
  9. I don't know who told you that but it is not true. I have positive RF and do not have RA. RF can be elevated from other autoimmune diseases, such as Sjogren's Syndrome, which I do have. You can have elevated RF without RA, but probably have another AI disease.
  10. I would agree that you may have Celiac because your tTg is slightly elevated and your Gliadin Peptide is very elevated....which means you are producing antibodies to the gluten in your diet. Yes, there is another test called the EMA that is usually not done without other positives (which you have) because it is an expensive test that has to be done by hand. This is why many GI's do not order one right away or at all. As far as the biopsy being the Gold Standard....it isn't, because if you have patchy damage or damage that is just in the beginning stages, they may miss it and then tell you you don't have Celiac, when you do. Many doctors do not diagnose Celiac without extensive damage so even the biopsy may not give you the answers you need. This is why diagnosing Celiac can be so frustrating. I would ask for the EMA test as you already have 2 other positives on your incomplete panel. If that is positive, then coupled with a positive tTg, that is a slam dunk for Celiac without the biopsy. You could also ask for gene testing, to see if you have the genetics to trigger for it. If the EMA is negative, then a biopsy would be the next step.
  11. With the numbers that you got back from your blood work, it is highly probable that you have Celiac Disease. I an not sure what this test means as I have never seen this before: Celiac Disease Dual antigen screen: 199 but having a tTg of over 100 points heavily to Celiac and your DGP shows that you are reacting to gluten in your diet.......significantly. I had extremely high numbers on my blood work and declined the endoscopy. I was too sick to have it done. I have never doubted my diagnosis, ever. No doctor has ever doubted my diagnosis, either, once they see my diagnosis blood work. I think doing the endoscopy is good if your blood work is inconclusive or barely positive but with really high numbers like you have, it probably is not necessary unless you will need that proof to stay on the diet. I have never found the gluten-free diet to be hard or difficult but it is inconvenient, at times. You have to do a lot more work when you travel but Celiac has not kept me from traveling out of country. As an adult, the decision is really up to you and what you are comfortable with. I wish you all the best!
  12. Like Ennis suggested.....protein, healthy fats and bread. Yup...gluten-free bread. I am a thin Celiac and I did not really gain until I started eating gluten-free bread. Udi's has a couple of choices that are very healthy breads........they are very whole grainy. I sometimes eat PB&J sandwiches for snacks. Or load it up with tuna, luncheon meat and cheese. I agree...it can be hard to get enough calories in when you eat healthy.
  13. You know, Rosie, it is perfectly OK to eat out when gluten free but it does take awhile to learn the ropes as far as what is safe. I would not recommend eating out on a regular basis but occasionally or when traveling, it can be done quite successfully. The FindMeGlutenFree site has reviews by other Celiac's and they do a pretty good job of helping to make that decision on whether or not a place is safe, easier. With each passing year, if you do your homework and ask questions, it becomes easier and easier to do. Just make sure to identify yourself as a Celiac when ordering so they know to take you seriously. I find that makes a difference because of all the fad dieters...or the Celiac's who cheat. They will not take you seriously if you order a gluten-free meal and then eat the bread and that happens often enough that servers tell me about it. Your doctor is wrong...you are doing great! Having your DGP go down so well means you are not ingesting any gluten. You have brought your antibodies down well from very high in only 5 months so pat yourself on the back! I, too, was diagnosed with blood work only because all my numbers were in the ridiculously high range.....no need for a biopsy. The bloating you are having may be from dairy. Have you cut that out or cut way back on it? I can still only eat dairy lite but am comfortable with that. The ability to digest dairy is compromised in many Celiac's due to villi damage but some get it back once they heal. That may be what's causing it. Dairy is a known bloater!
  14. Rhiannon.........you may be interested to hear that OCD, anxiety and depression are all things can happen with undiagnosed Celiac. Seratonin is made in the gut and when your gut is compromised from Celiac, then you aren't really producing much seratonin. Many people notice improvement with these issues when they go gluten free and heal. The gut-brain connection is real! I, too, was excited about my Celiac blood draw. I mean, ecstatic to think I had finally found the solution to my years of misery. I was not diagnosed until I was 46 years old so accrued many years of damage. However, 12 years later, I am doing well and feel much better than I did in my thirties so if you do have it, and it sounds like you really may, keep that positive outlook because the gluten-free diet is not nearly as bad as some people say. There have only been a couple of things that I could not duplicate gluten-free but everything else I do a great gluten free version of. What you lose is convenience, not great tasting food. When you start healing and realize how many symptoms were related to Celiac, it will blow your mind. I would highly suggest trialing a gluten-free diet even if testing doesn't give you all the answers you seek. Many times, people notice a huge difference, positive testing or not. Thank you for your kind words about my father and brother. It was horrible and that is when my hives really became bad. Not surprising, really. But, with time, that acceptance comes around and you deal with it better. I still miss them terribly but it does get easier. I am just glad the hives are going away because they are a major pain in the ass and doctor's don't help much.