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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.

cyclinglady

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About cyclinglady

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    Female
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    CD diagnosis: 3/2013, DGP IgA positive only, Biopsy: Marsh Stage IIIB,
    Hashimoto's Thyroiditis, Diabetes, Osteoporosis, Thalassemia
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    Orange County, CA

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  1. Hey, I had Hashi's some 15 years prior to my celiac disease diagnosis. My doc put me on a very lose dose of Armour. It did bring down my antibodies (by half), but they were extremely high to begin with (anything over 30 was positive and mine initially were close to 4,000). My nodules and enlargement stayed constant. Both actually went away since I have been gluten free! Like Gemini, I am on Armour for life! But that's okay. Just had my TPO checked yesterday, in fact, and now the number is 360. So, better, but that lab range is anything over 15 is positive. No reappearance of the nodules or enlargement. I am also on a low carb high fat diet to treat my diabetes too.
  2. Dang! If I lived that close to Chicago, I would definitely go to the University of Chicago's celiac center even just to hang out with some celiacs or celiac-savvy folk! (Maybe visit Aunt Mary too....) Consider a second opinion. Some people spend more on their Friday night bar tab instead of paying for a second opinion (cash) if they went out-of-network (insurance). Your current GI must suspect something (e.g. parasite). Maybe he is hoping it will resolve on its own (frankly sometime this approach works), but that side pain for over a year is not normal. Keep advocating. 😊
  3. Even when glutened, I have YET to have a positive TTG (IgA or IgG). Before you give up on a celiac diagnosis, get the GI to order the rest of the panel. Make sure it is firmly ruled out. This happened to my 20 year old niece. celiac disease was completely ruled out (blood and endo), and colonoscopy clear. Finally, a pill camera found Crohn's at the end of her small intestine out of reach of both scopes. Note that she could still develop celiac disease one day. Not saying you have Crohn's, but be persistent and continue to advocate for your health! Keep eating gluten!
  4. Listen to these wise people! Believe me, I like exercising. I am a very fit older lady! But when sick, glutened, recovering from surgery or injury, I skip working out. I stayed off my beloved bike for almost a year because of vertebrae fractures. Instead I focused on first healing the fractures and then building up slowly. It is hard to be patient! Listen to your body! Save your excess energy for studying. 😊
  5. Oh, yes! It just takes time. I know, hard to hear, but it took a lot of time for your symptoms to develop. Most members feel noticeably better in a few weeks. Just rest as much as possible. Spend time learning the Gluten free diet. There is a steep learning curve to the diet. Want to shorten it? Eat as much Whole Foods as possible. Think stews and soups. Things that are easy to digest. Eliminate dairy until you start to feel better and then re-introduce it. Many celiacs become lactose intolerant because the enzymes that help digest lactose are released from villi tips. Not villi, no enzymes (or at least a reduction based on patchy damage). Do not eat out for a while! Hang in there!
  6. George, i am sorry that you are not feeling well! ☹️ I am not a doctor, but just trying out drugs to stop your symptoms just seems like a band aid approach. It sounds like he suspects IBS which is really, in my opinion, "I be stumped". Has inflammatory bowel disorder (IBD) (more lovely autoimmune disorders) been ruled out? This includes both Crohn's and Colitis. My niece was diagnosed with Crohn's finally with a pill camera after all other tests were given. The damage was not within reach of any scope. I am just throwing out suggestions. Hopefully, you and your doctor will figure it out soon!
  7. Celiac disease is an autoimmune disease that happens to have a known trigger -- gluten. Flare-ups develop (antibodies) causing damage. Not just in the small intestine, but systemically. One gluten exposure can cause antibodies to increase for days or months! Antibodies are being measured during the celiac blood tests. If there is no gluten exposure, there will be no antibodies. These antibodies can come down in some people in as little as two weeks. Recommendations require gluten 2 to 4 weeks daily for the biopsies taken via endoscopy in order to be sure to catch damage, but 8 to 12 weeks for the blood tests. The endoscopy is considered the "gold standard" in helping to diagnose celiac disease, but there are other things that can damage the small intestine. So, the blood test helps solidify the diagnosis. So, if you want a good result on your endoscopy, you need to be eating gluten daily for two week prior at a minimum. I know it is tough and you are feeling sick. Wish there was a better way to catch active celiac disease.
  8. Learn more about testing for celiac disease here: http://www.cureceliacdisease.org/screening/ You do have to be on a gluten diet for ANY of the celiac tests (blood and biopsy) to work. While the endoscopy (with biopsies) can reveal villi damage, many other things besides celiac disease can cause villi damage too: http://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/ So, both the blood test and endoscopy are usually ordered. There are some exceptions, but those are not common.
  9. Exactly what are your allergy symptoms? Were they IgG or IgE? Allergy testing as a whole is not super accurate -- especially the IgG. Were you on any H1 or H2 antihistamines for the last five days when you were tested? As far as celiac testing, four days without consuming gluten probably would not impact testing.
  10. In my research, diabetes (type 2) is genetic. You either have the genes to develop diabetes or you do not. Additional weight is most likely due to insulin resistance. I happen to be a thin diabetic. I have never been heavy. I was brought up to consume the Standard American diet (SAD) full of process and sugary foods. The problem most celiacs have is that they just simply convert the SAD diet into a gluten free diet. I disagree. We need to consume foods that naturally contain nutrients that are good for us. Fortified foods were only developed during the last century. In the 20's they added iodine to salt to prevent thyroid disease (goiters). In the 30's they added Vitamin D to prevent rickets (fortified milk was better than that nasty cod liver oil). In the 40's they started fortifying flour. Why? They found that kids entering into the military during WWII were malnourished. Yes. They were malnourished. Remember, the Great Depression preceded the war. Read more: https://www.ncbi.nlm.nih.gov/books/NBK208880/ I consume very few grains because I do have diabetes. I eat fresh veggies (full of fiber), meats, fruit, eggs, and dairy along with plenty of fat (which does not raise blood sugar). I do occasionally fall of the wagon, but never the gluten-free wagon! Granted this diet is not for everyone. We must choose what works best for our individual health issues. But chances are we do not need to consume processed junk food in a daily basis. It is not healthy for a celiac. It is not healthy for anyone! So, everything in moderation and enjoy a varied diet.
  11. Only GIs can order a complete celiac panel at Kaiser. Your results look negative, but those are just "screening" results. You are not IgA deficient (used only as a control test for celiac disease) so that means the TTG IgA test worked. If you suspect celiac disease, ask for a GI referral. Keep eating gluten!!!! If you go gluten free then all the celiac tests will be invalid. You should rule out other issues like Crohn's, SIBO, etc based on your symptoms and health history. I would ask for a complete celiac panel from the GI. Why? Not all celiacs test positive to the TTG which is a cheaper, but excellent test but does not catch all celiacs like me!!!
  12. You only need one positive on the celiac panel. I tested positive only to the DGP IgA and had a Marsh Stage IIIB intestinal damage. Good luck!
  13. Welcome to the forum. First, you need to get copies of your celiac test to confirm you actually had it done and what the results were. Second, to confirm a diagnosis, you must obtain biopsies via an endoscopy. Were the doctors gastroenterologists? Third you need to research celiac disease. Yes, you can be asymptomatic, but could still have instestinal damage as the small intestine is vast. here is a good place to start: http://www.cureceliacdisease.org/screening/ You might think you are a silent celiac, but ever been anemic? Had your bones checked?
  14. @jddh So...did the restricted diet you were going to implement work (FODMAP or Whole Foods)? I recall that you were mis-diagnosed at one point with refractory celiac disease, but it was later determined that you were getting trace amounts of gluten in your diet. If you are not catching colds, I assume that you have healed from the damages of celiac disease? I hope so!!! 😊