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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.

GalaxyDuster

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  1. Thank you all very much. I actually cried when I got the answer. I wanted an explanation that I could "fix." Now I'm back to thinking I'm just weak and possibly crazy. I know I'm not crazy, but you know.
  2. Well guys, my blood test came back negative for celiac disease. Total IGA =161 (normal), IGA-TTG was < 1. I'm really quite surprised. My GI appointment was bumped up to 5/10 at least, so I won't wait til June to see them. My quest to find out where my lost 40 lbs went continues. Thank you all for your kidness and expertise while I waited for my answer. I can come back and let you know what they found out, in either case. Thank you very much again. All of you stay well!
  3. That explains EVERYTHING. I had Aetna PPO about 4 years ago, and it was horrible. Absolutely horrible, and expensive. They jacked up the price the year Obamacare came out, from $550 a month (family) to $725 a month and I got stuck paying it for a year. I dropped them like a rock when open season came around. They are a greedy and worthless insurance company.
  4. Hi Ahhhnold (is that like Shwartzenegger?! ), I am also waiting for my endoscopy. In the meantime, the people on this message board suggested that I request the celiac antibody panel to be drawn. Do you know if that was included in your blood work? If not, you can ask your primary care doctor to order it while you wait. That might shed light on just what's going on in your body. I had mine drawn yesterday and am waiting for the results, but they typically can be back within a few days. Why not give it a try?
  5. I know what you mean. On one hand, I don't want celiac disease, but on the other hand, it would be a "fixable" problem that would explain so many of my health problems... all the way back to age 11, honestly! From my understanding, from the very nice and knowledgeable people here, only one test being flagged high counts as a positive or potential positive. Letting the GI specialist know this means that they will (should) take extra care when doing and endoscopy and taking samples for biopsy. Good luck! I hope you get your answers!
  6. Blood was drawn this afternoon... they said I could get results tomorrow or even the next day! I also have a GI appt scheduled for June 9th. I am so glad I will have at least some kind of answer pretty soon. I'll let you all know. Thanks again for being so helpful!
  7. I got my script from the doc... it's for total IGA and TTG-IGA. Guess that's a good start? It also says "fasting" on the requisition, do I really need to be?
  8. Thank you so much. It's so nice to have such friendly and helpful people to talk to while I await my answers. I had an interesting experience yesterday... I ate a bowl of Kraft mac n cheese... then passed out for 4 hours and woke up vomiting. I've had a lot of experiences like that after eating over the past 2 years, but I never put those pieces together because celiac disease was totally off my radar. Just found it very interesting. I've been pushing down lots of gluten-y foods just to make sure my tests will come out right. So tired of waiting! Really, if this isn't the answer to my 40 lb mysterious weight loss, fatigue, and painful gas/bloating... then what's left? Cancer doesn't seem likely in a 33 year old, but I am really scared. Thanks for helping me through this. Anyone who stumbles accross this place is lucky to find such supportive and kind, helpful people! ETA: Another question. I take an antihistamine every day (sometimes twice) for the weird itching I get... will that affect the blood test?
  9. I just wanted to say, because of your post I did ask my primary care doctor's office to order this antibody panel for me, and they thought it was a very good idea. I should be able to have it done next week (still waiting for my GI referral). Thank you!
  10. I would definitely recommend getting tested first. Everything I've read so far (it's been less than 2 weeks of a learning curve, but I'm learning!) has said your antibody tests and endoscopy/biopsy tests may come out as false negatives if you start a gluten free diet first. Believe me, I've thought about trying it just to relieve this very long-standing suffering, but I really want the answer in plain writing first. I hope you find your answer and get to feeling better! I am not sure if the pain in my back is part of this nerve damage process. Lately, even the skin hurts to touch (like, the touch of clothing). On my upper legs, too. It is just so weird. Feels like going crazy, doesn't it?
  11. At this point, if I was to diagnose myself on symptoms alone, I'd be absolutely sure that this is what I have. 10 days ago, I would have never even considered it. Now I just feel so confused and crazy and unsure. What am I even going to do if this is not my answer? The pain in my back is so severe. I would love to have my answer and just make it go away. I hate feeling like I'm just crazy, crazy, crazy!!!
  12. I just got a call from my new doctor's office. They said my vitamin D is still quite low, and magnesium is quite low. Everything else (even RBCs and iron, they said) were normal. They agreed to send me a script to have those antibody panels done. But now I'm wondering, shouldn't I still be anemic and have low iron, if celiac disease is my answer? I feel like I'm going crazy. I wish this idea had never even been put into my head.
  13. For the last couple of months, I've had intermittent periods of sweating and chills with increased aches around my back and sides. I'm also more tired. Even the skin is sensitive, like when you have the flu and even clothes or light touch "hurt". I've also thought about how I had those swollen lymph nodes on my MRI last year (the CT scan I had months later showed the lymph nodes to be normal sizes, however). It was from October 2015 (positive MRI) to January 2016 (the negative CT) that the changes occured. The finding was incidental, the MRI was for the back pain and they just happened to see "many enlarged retroperitoneal lymph nodes, up to 1.5 cm." Can any of these symptoms be associated? Wouldn't the lymph nodes stay inflamed if it was celiac disease? I feel blind here, I just don't know much about it, but I've been reading a lot and considering all the possibilities. ETA: I had a weird IGE allergic process about 4 years ago where I got dermatographic itching and hives all over my body, my feet swelled up so bad I had to call into work and go on prednisone. They never figured out what caused it. I had an ESR drawn in October of 2015 (around the time of that MRI) and it was normal. I know it's non-specific, but if it is celiac disease, shouldn't the ESR be high all the time?
  14. Yes, and my oldest daughter has all kinds of symptoms of being very sluggish and tired and exhausted and I have to say, if I turn out to have this disease, she's next on the list to be checked out for it!
  15. I have to admit, I have considered this possibility. It's like I can't digest *anything* properly. ...But I really want to know exactly what's been wrong with me, and I don't want to mess up the tests by starting a gluten free diet too soon. I don't want to be in a place months from now where I wonder what's really going on. I really, really want a straight-forward yes or no answer. I am going to keep pestering the doctor to try and speed this up. I have been suffering for so long, I just want my answers right now!!!