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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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Carolina

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  1. I thought I would come back and update one more time. We got a 2nd opinion from another Pediatric GI that is well-regarded. I also preferred a female because I think that will make my daughter feel more comfortable especially in the years ahead. The new Doctor 100% agrees with me on the Celiac diagnosis and said with numbers that high there is no way it is a false positive from the IBD. We also got the MRE results back and they were good...best news ever! So, now we know the IBD is only affecting the colon. Although I want to be able to label it, we have to wait and see. She is not a typical Ulcerative Colitis case because the large intestine is "patchy" with diseased and healthy tissue which leans more towards Crohn’s. For now the treatment is the same, nutritional shakes to calm inflammation, gluten-free diet and Lialda for the colon inflammation. We will check in December to see if the drug is working. She has gained 3lbs in the last week and is officially on the bottom rung of "healthy" weight on the BMI calculator at 5%. I can tell some Doctors just don't like to put IBD/Celiac together, but it does exist. One other thought for those that read in the diagnosing phase, things looked ‘unremarklable’ after the endo per his words, but the biopsy did in fact show diffuse flattened villi, celiac damage.
  2. I wanted to update since we had her appointment this morning. I am forever grateful to a local friend that has UC and spent a long time looking at her case and armed me with incredible information. I shocked him at every turn and it felt so good! We started the appointment with it's most likely Crohn's and ended with 75/25 to 60/40 it is UC and Celiac. I am clinging to that hope perhaps too much. He was supportive of the gluten-free diet change and my desire not to do steroids and start as "small" as possible. He does still want her on a 5-ASA drug. Our next step is also to get an MRI which will give us a better picture. He was impressed I knew about the promethius assay test and impressed that I knew UC usually starts in rectum and works its way up BUT there are some exceptions though rare that will not have disease all the way and will have an area of healthy tissue. Bottom line he leans toward Crohn's because (1) there are 2 spots in colon with no active colitis and (2) a part of the small intestine has something "mild" going on. I am praying we are going to be one of those exceptions!
  3. Haha, I’m on it. Had myself tested last week and all were negative. Understood, we are a family of Type A overachievers and none of us are good at relaxing. Work in progress....
  4. Thank you, allow me to comfort you now. I have had AI issues since college. Reynaud's and debilitating joint pains along with chronic fatigue. I was always in a gray area, blood work trending towards Mixed Connective Tissue Disease. Signs of Lupus but not everything needed to diagnose with certainty. They initially tried to say Fibromyalgia which is the we don't know what's wrong with you catch-all IMO. 100% stress was affecting as I was married and wanted to start a family by this time. Pregnancy put all my issues into remission. My blood work still comes out with lots of abnormalities but until something new presents itself I choose not to think about it. I get joint flare-ups very, very rarely now.
  5. Thank you. Despite what he said initially, I do not plan to ignore the Celiac results. I am working on a 2nd opinion that I want for that reason and to also get another opinion on Crohn's treatment plan. Her procedures were Friday, she had D on Saturday whether it be from the flare-up or procedure and has been fine since. I know others require liquid diets for months after diagnosis to get flare-up under control. Given (huge knock on wood) she is on the better side of that equation, I want to best understand how hard it needs to or should be hit with meds at this point. I hate all the drugs for Crohn's, I will do what is necessary, but not without fully understanding all options while exploring more natural options like diet. I know many are diagnosed young with failure to grow or gain weight, also clinging to hope that even though she is very thin, she has always been consistent on her growth curve...tall and thin.
  6. I just got an email that some test results were updated. I am devastated. Tough to understand it all, but this was the comments at the end... COMMENT: The upper gastrointestinal tract involvement (duodenal) and sparing ofthe hepatic flexure/proximal transverse colon segments are suggestive of Crohn'sdisease. Clinical and endoscopic correlation is suggested.
  7. Thank you all for taking the time to respond. I really don't see how it could be a false positive and I plan to proceed with cutting out gluten regardless. I have great medical where I live and the Doctor is highly regarded. I know he specializes in Chron's/Colitis. I plan to get a second opinion. I am really hoping he doesn't come back with Chron's, I have seen no signs of growth issues so hanging on to that for hope. I'm also puzzled why he would rule it out, when it doesn't have to be an either/or from what I am understanding.
  8. Correct, I have not heard the official biopsy results of endoscopy and colonoscopy. He said based on what he saw on endo he doesn't suspect celiac and based on what he saw on colonoscopy it is clear it is IBD in some form. I have read I should ask how many biopsies were taken to confirm there was enough taken to not be missed. I thought anemia too, but CBC came back normal. WBC were slightly elevated and Sed Rate Westergren was 16 (0-10). Everything else normal.
  9. Hello, I would appreciate some guidance on my daughter's testing results so that I may be armed with the best questions to ask at her follow-up appointment. She is 10yo (tall 75% and very, very thin), consistent growth curve since birth. Had constipation issues as a toddler, but nothing overly noteworthy. Treated with miralax. She occasionally complains of joint pain in her knees and ankles, and I feel her coloring has changed over the years. She looks very pale and just not as healthy. Last spring she had 2-3 weeks of diarrhea with some blood, tested for infection at the time and there was none. Another episode over the summer, shorter duration and unknown if there was blood. Currently again having a flare-up with blood and got a quick appointment with a Pediatric GI. 4 out of 6 tests came back positive for celiac. TTG IGA over 100 (0-3) with weak positives on TTG IGG and IGG as well as a positive in endomysial antibody. Given the blood in stools he scheduled endoscopy and colonoscopy. After the procedures he said he doesn't "think" it is celiac and believe it was a false positive from IBD. The intestines were very inflamed and suggested it was Ulcerative Colitis or Chron's and would wait on biopsy to say more, learn about diets, etc. I would not wish this on anyone, but given no "good" options I was hoping for celiac disease and found some peace that a diet could help over drugs. I am devouring everything I can read before our appointment this week. If anyone has any insight as to why her blood tests would seem so clear, yet biopsy appear clear, and then colonoscopy show IBD inflammation please share. Thank you!