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    • Frequently Asked Questions About Celiac Disease   09/30/2015

      This 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 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 Store. For Additional Information: Subscribe to: Journal of Gluten Sensitivity


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About Ginger7

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  1. Oh yes, we discussed the pros/cons of gluten-free B4 scope and he is back on gluten until scope. So, I'm looking forward to more information from scopes, which I hope r soon. I sure hope his colonoscopy prep is not as bad as mine was...
  2. Hi, I've posted b4 about my 8 year son who has persistent stomach aches and diarrhea with occasional constipation. His labs came back mostly normal, although a few notable things: Low ferritin Low vitamin D CBC normal ESR 9 (cutoff less than 10) Celiac panel negative serology, one positive gene DQ2 Fecal calprotectin 222 Way down in growth charts (2% height, 12% weight) GI said retest fecal calprotectin in 6 weeks. Really? I suggested its time to schedule endoscopy and colonoscopy given low vitamin levels/growth and fecal calprotectin results. 222 is pretty high for a child and possibly a sign of celiac and or IBD like crohns or UC. Given it will take 2 weeks at least to schedule plus GI said he needs to go back on gluten. We've been trying gluten-free for last ten days with some minor improvements although he has lost 6oz since last visit about 3 weeks ago. What do you think out there? I'm hoping it is "just" celiac. We can manage this but I feel so sad thinking it could be IBD plus or minus celiac. I know that celiac alone is difficult but I feel overwhelmed with the possibility of both.
  3. Also note that b12 is absorbed in the latter part of intestine, the terminal ileum so one possible idea to throw out there is that celiac has caused damage in the duodenum or first part of intestine causing the low iron. The latter part of the intestine, terminal ileum may not be damaged and hence b12 is not low. What is the range of b12 given? Seems like that number might be right on the upper border or just over. Also have you have ferritin tested which indicates stores of iron? Plus I agree with other post around b12 tests. Have you had endoscopy/colonoscopy done?
  4. Assuming your doctor has ruled out obstructions and/or inflammatory bowel diseases such as ulcerative colitis and crohn's disease? Though you say CT scan normal which might be helpful, have you retrieved all your reports and maybe go for second opinion? What about labs? Slight fever suggests some sort of inflammatory process ongoing. Were samples taken for biopsies from scopes and an adequate number at that? Since you did the pill cam, what about sending those images/video to another expert, like one from a major clinic depending on where you live (Mayo or John's Hopkins for example). I thInk you need to gather all your records and see someone else. I wish I could be more helpful.
  5. As I'm sure others will note, if you want to know how your intestines look, you need an endoscopy and your GI will take 6-8 samples to detect and confirm celiac. You have to be eating gluten, as your intestines can begin the healing process quickly and therefore make any biopsies falsely negative. I don't know how long a few days or weeks gluten free would make on biopsy results. I guess it depends on what you want and how far you are willing to go to get answers of whether simply going gluten free is enough for you personally. There are also additional blood tests you could obtain (while on gluten containing diet).
  6. I would be concerned with the suggestion to stay on miralax indefinitely? That seems strange to me, could be slow transit?? But could also be masking underlying disorder. Agree with previous post, suggest tests for celiac and inflammatory bowel diseases.
  7. Went to John's Hopkins, good news is don't have to do anything but monitor. So I will get an MRI in six months. Bad news-no fight club for me
  8. Well, here is an update. CBC pretty normal, lots of low normals but within range. A few interesting results, B12 high normal Ferritin 17 with low end of range 10 Vitamin d low 34 with low end of range 31 I've read that both iron and vitamin d are absorbed in duodenum vs b12 in the terminal ileum, early celiac disease often presents with low iron and vitamin d but normal b12 until the disease progresses. So, that made sense... Today the celiac panel, from Prometheus came back negative across all five parameters. His total IgA is 93 within the range which starts at 44. He does have the DQ2 gene. We have a GI appointment Thursday where I imagine we might discuss endoscopy. I guess I'm mad, frustrated, etc. Not that I want my son to have celiac, but all the symptoms point to celiac and I thought the tests would show it.
  9. Someone already mentioned it but thought it was worth repeating, what about homemade shakes? You could make something free of foods she cannot eat but also sneak in some protein and other good stuff. My kids are the same way and sometimes they will drink a healthy tasty shake.
  10. Just wondering, are you certain it was poison Ivy and not DH which can c Be extremely itchy with some clear fluid. Need a biopsy of area next to rash to test. DH is demirtitis herpertiformis.
  11. Why is it that my ped dr has no idea what I'm talking about regarding Prometheus testing??? They said first they do bloodwork, then celiac testing then referral to GI. Why on Earth would you subject an 8 yo to multiple lab sticks when a parent has Celiac? I ordered the test kit myself, it will be overnighted to my house and I'm bringing the requisition slip for her to sign when I get there for appt tomorrow. I actually think it is quite scary how little drs know. They are generalists w/ little specialty knowledge unless there are special circumstances. I'm going to get this test so I'd better spit out my gum b4 we go in...jk I will start out nice and polite.
  12. Thanks everyone, I feel alittle better. At least for my son, regardless of testing outcome, I will be going gluten free for him since I know my tests weren't 100%, but I feel tremendously better gluten free. All my vitamins were very very low due to malabsorption and seeing him in the bathroom sealed the deal for me as it reminded me of me!! Having trouble sleeping with my mind racing, and my 6 month old thinks it wake up time..,
  13. And I want to say I had no idea he had loose large volume stools until I finally "caught" him in the bathroom today, looked at it and yes I took a picture with my phone. I don't care if people think that's gross, actually I don't think this community would...he is 8, it's hard to get him to tell me what his poop looks like!! The other symptoms are very sketchy and it's only when you put it together that I now feel like a dumb a@!
  14. I've made a few posts since December 2011, all about myself. I have gluten intolerance/Celiac. Call it what you like though I do not have a positive biopsy. My genetic testing was a category 7 from Prometheus, very high risk, w/ only 8 as highest risk number. I have three kids, 8 yo boy, 2 yo girl and six month old girl. My son has always been small but we always brushed it off to us not being huge. I'm 5'4" 120 lbs and hubby is 5'10". I've been gluten free for six weeks and I'm 75% better, mostly related to going from persistent D (10/day sometimes) to normal BMs. Have been thinking about testing kids but today it really hit me about my son... He is in 5th% or less for height He has only lost two teeth so far Definitely, always the smallest kid, people ask if he is 6 Dark circles Under eyes Gets a lot of stys around eyes Extremely dry skin, ESP on hands Loose large volume stools Occasional abdominal pain w/ constipation Runs like H to the bathroom (ie urgency) though I always brushed this off to him being a busy boy He might have canker sores now and then I'm crying while writing this bc I feel so terrible about this. Have I set him up for being short his whole life, to be made fun of for this reason?? Is he in pain everyday and doesn't tell me bc a tummy ache daily is his normal? Why didn't I see this b4? I was so wrapped up in myself and my own symptoms that I didn't connect the dots with him. I'm obviously calling the ped tomorrow to demand blood tests. Want a bunch besides full celiac serology and genetic panel. Also want CBC, Vit D, B12, ferritin, thyroid, cholesterol, LFTs and anything else I might think of. The ped better not F w/ me bc I'm not playing that game. We also live close to DuPont Children's hosp where there is a doc listed on celiac association, so will be making an appt, but will see if ped orders bloodwork in the meantime. I will also get my 2 yo tested but guess I have to wait with my six month old. Any words of encouragement or advice are welcome.
  15. Keep it simple, rice and plain meat are great options. By just keeping foods simple, you can avoid gluten without spending a ton of money. I found that by starting out simple, I could adjust and slowly explore other foods without getting overwhelmed.