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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 Momto2girls

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  1. I recently had the Alletess food sensitivity panel done. I was expecting to see more dairy food reactions, but instead I tested positive for gluten, yeast, barley, wheat, rye, and barley. My highest were the yeast and wheat. I wasn't surprised that one or two of these things would pop up, but all of them? I know I need to do an elimination diet, but I am wondering is it common for someone to test positive to all of these things? And would you think I need to pursue Celiac testing in light of the results? Thanks!
  2. Hi everyone! Well, back to GI doc today and he still seems to think that the Celiac diagnoses is the most likely, and he wants to re-do the Celiac panel. It has only been 4 months since we last did the bloodwork -- but he said that's long enough for something to change. He said 4 years old seems to be the borderline age for most kids -- where they've been eating gluten for long enough that it would show up in their system. She had just turned 4 when we tested her last. So, I am thinking we'll test again before we take her off gluten and then we'll try gluten free after that either way. He doesn't think it is IBD at this time...and I don't think it is nothing at all. Ack!
  3. Thanks, it is discouraging. I am thinking they only keep kids on the meds if absolutely necessary and hat would only be with a definitive diagnosis of Crohn's. (I say Crohn's b/c apparently inflammation in the ileum is Crohn's rather than Colitis). So I think he'd rather see she's having difficulty without the meds and re-scope than to just go back on the meds! Which seems crazy to me. And believe it or not, this is our second GI doc. Her allergies are epi-pen allergies (nuts and eggs) so she's not had those -- they are lips swelling, hives, throwing up allergies that lead to anaphylaxis. I honestly don't know if it is celiac. Some days I think it is some days I think it isn't. We haven't had the genetic test. So maybe that's next in line? I just wish this weren't so complicated!
  4. My DD is 4 and has had GI issues for a long time -- everything from constipation to impaction with diarrhea and tummy aches, reflux and overactive bladder due to constipation. In April the did bloodwork for Celiac which came back normal. But at that point she was getting constipated to the point of impaction within 2 weeks -- we'd do a cleanout -- and boom, need to do a cleanout again in two weeks. And this was with her going everyday (on miralax AND senna laxatives) -- so she wasn't holding it. So we did an endoscopy & colonoscopy -- our GI was sure they'd find celiac. But when the biopsies came back she said she was "thrown sideways." Not only did we not find Celiac, but they found inflammation in her ileum and large colon. So, more imflammation indicative of IBD, yet they still will not diagnose IBD b/c there was no damage, yet. But they went ahead and put her on sulfasalazine -- an IBD med, and she was SO SO SO much better! Perfect, in fact! But the doc wanted her to go off of it so she did and now she's having problems again...grrr. I keep having this sinking feeling that maybe it really is still celiac? She has other severe food allergies, and maybe this isn't so far fetched? Does anyone know? Has anyone had a celiac child improve on sulfasalazine? Thanks for any insights you might have!
  5. Nope -- it is the best way to do a clean out -- we've done it several times, and it looks like we're impacted again and will be facing another clean out. But we've been on miralax for close to 2 years and now I want to get to the bottom of the problem so that we can get this all straightened out, and get off of it! It is so frustrating!
  6. Wow -- I am enjoying it, for sure! This is amazing!! Now, she's up (again) in the middle-of-the-night-very-early-morning, but instead of crying and saying her tummy hurts, she came in saying she was hungry!? Don't tell me this is a result of gluten-free, too!? I am kind of STUNNED. My best friend is Celiac and she said it took months for her to feel better, but again, she was in her 20s so maybe that was why? Also, in Gracie's recent scope she didn't test positive for Celiac so there's no actual damage at this point, might be just a gluten intolerance or sensitivity getting much worse...because I seriously can't believe this!?
  7. So, yesterday I decided it was just time! (Thanks so the encouragement here!) And so I went to the store and starting from dinner on my 4 year old (and me!) have been gluten-free. She has been SOOOO sick lately...I mean, I have been seriously worried about her (aside from her being a mess digestively and having inflammation on a recent scope), she also has had no stamina, has not wanted to do anything, has been falling asleep at the drop of hat, so grouchy, huge meltdowns over tiny things, etc. Welp, here we are 24 hours later and she will. not. shut. up. Honestly, she cannot stop talking! She is going on and on and on like I have never seen her do in her entire life! It is like the life is back in her -- she's walking around talking and talking and hubby gets home and she's talking and talking. It is hilarious! But, this is the first day in a week she didn't fall asleep on the couch right before dinner! It has to be a coincidence, right!? This can't be the no gluten, right? We went for an x-ray today so we'll know tomorrow if she's backed up -- but even if she is, she's sure in a better mood! Thank goodness!
  8. I am wondering the same. How much miralax is he taking? And has he had any constipation since going gluten-free? Could you try going down on the dose for a few days and see what happens?
  9. Oh wow -- good to know. We are working with a ped GI but we are still having issues. In fact, I am pretty sure we are going to have to get another x-ray today. Luckily we haven't let the problem go for long without a cleanout, but it does take 6 capfuls of miralax a day for 2 days to get her cleaned out and we end up doing this every 2 weeks. This is with a maintenance dose of miralax AND 2 senna laxatives a day. And now she is also on sulfasalazine for the inflammation they found on her recent scope. And even with all of that she is backed up again. So we are taking out gluten today and praying it'll make a difference. I am so frustrated!!
  10. Oh gosh, I am so sorry to hear that! I sure hope you can find an answer. Is it Celiac? Crohn's? Both? My DD has inflammation of the ileum and left colon but apparently it doesn't look like Crohn's?
  11. Oh wow -- that's amazing! We are having the same thing - impactions with diarrhea around -- we are on miralax AND 2 senna laxatives a day -- and now we're on sulfasalazine, too, for GI inflammation. And even still she's impacted again within 2 weeks of a clean out -- so we have to do 6 capfuls of miralax for 2 days in a row in order to clean her out again. SO excited to hear that you were able to stop using it almost immediately!! Did you get a Celiac diagnosis or did you just decide to give it a try? I am VERY curious to hear about how this all came together for you! I am getting motivated to actually try this!
  12. OK great -- she LOVES rice, and potatoes, too. In fact, we can probably make this work! We do have her off of milk (as far as drinking, not baked in), and yogurt and even mostly off of cheese. She has liked black beans in the past but has gotten pickier recently. Though she really loves edamame. Finger food sound fun. Maybe we can actually do this!? When to start!? Hmmm....
  13. Yes, exactly. That's more what I meant rather than needing a her permission. I do think it is time to try this as the allergist is ready to look for more "traditional" allergies that are causing this, but if we find that gluten is the culprit we won't have to do that testing, either, ya know? OK, now what to feed a picky preschooler who has a nut allergy and egg allergy (can eat baked in), doesn't like meat, and can't have artificial color or dyes? Oh, and she has a tummy ache all. the. time. Luckily she does like fruits and veggies!
  14. OK, sounds good! I have to say as a mom of a young child going gluten-free has always hugely intimidated me, but I know as far as a medical issue, Celiac would be the better diagnosis, as it is all controlled with diet and not all of these awful meds and surgeries! So I am kinda hoping that's what we'll find. And I'll learn to eat without gluten just like I've learned to feed her without nuts and eggs and artificial dyes! Do you think I need to have my GI on board with this possibility, or just do it? The nurse finally JUST called me back -- and that was just to take down the info to send to the GI. Lovely. BUT my GI was out today so she asked if she could send it to another Doc (who I happen to know is the head of the group) and I am actually kind of glad b/c maybe he'll have something more interesting to say than my regular GI doc does. Ha!
  15. I do have a call into the GI doctor but they are slow as molasses, so I am wondering if you know how long we should give the sulfasalazine to kick in? I know the GI wanted her on it for a month, but I am guessing we'd see some sort of positive results sooner than that? It has been almost 2 weeks now (on Thur). It has been 2 weeks since her last clean out and it seems that we are impacted again, which is pretty typical for her lately. And the thing it she doesn't ever go but (rarely) a day without a movement. She's still going 2-6 times per day and yet an x-ray will reveal she's severely constipated? It is just lots of diarrhea at this point. And she's getting more and more fatigued. Also, she's complaining of a sore throat and has always had a very extreme thirst, which seems to be getting worse. And some joint pain here and there. Last night she was up from 2-5 AM in pain. I feel awful for her. I think you might be right, it is probably time to trial gluten free -- even if we continue with the sulfasalazine until we go back on June 9. Ack!