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Carolina

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  1. I realized I didn't really answer your question. Yes, she for sure has Celiac. We just weren't sure if she has IBD also. Celiac can cause colon inflammation if it presents with GI issues. The test they use for IBD to check stool for intestinal inflammation does have higher normals for Celiac patients. The results are not super high like in IBD, but higher than normal. It definitely presents there and has effects. Not all Celiacs have this issue, but untreated Celiac and Celiac that is not yet healed can. There are also lots of people that have microscopic colitis, lymphocytic colitis and IBD w
  2. She’s doing well, huge knock on wood, feeling superstitious even typing that. We’ve been doing monthly fecal calprotectin tests to monitor intestinal inflammation. She had a high result in August when constipated, but her next was very low so I’m very cautiously optimistic. I’m still not ready to take IBD off the table, but every month that goes by without a flare is a great sign. We are coming up on our 1 year of diagnosis so eager to do Celiac panel and see where things are at. She went to half dose last May and off meds since June, so thankful she hasn’t flared.
  3. I’m cautiously optimistic but haven’t seen it since removing the oatmeal and rice rollers, thanks again for all your help. It really is a shame the oats weren’t communicated by our nutritionist, I learned that from a support group. I sure hope I haven’t delayed her healing, eager to retest in a few weeks at the 1 year mark.
  4. Thanks for the reply. I actually started her on Culturelle 30 days ago when she was having loose stool. Now she is leaning towards constipation and going every other day sometimes every 3rd day. When you had this was it a lot? I’ve noticed it from time to time but last night it was plentiful. I could see cooked rice doing this, but these rice rollers are like a cereal. Still think this is a possibility? I’m going to cut them and oatmeal out for a bit to see.
  5. My daughter has what looks like seeds or rice krispies in her stool?! I have wracked my brain on what it could be in her diet and the only things I can come up with is gluten-free oatmeal or rice rollers which are sweetened brown rice snacks like a cereal. I wouldn't think either would come out undigested like this. I will contact her GI but any other ideas in the meantime?
  6. Well my daughter just finished up her 1 month of weaning from Lialda and will go med-free. She will do a fecal calprotectin this week to check inflammation levels and then again in a month off all meds. I am praying it was the untreated Celiac (asymptomatic) that caused the colon inflammation versus another disease on top. I wish I could find more people that presented this way, I have researched relentlessly. We are holding out hope her 3rd opinion GI is correct and that all her symptoms can be explained from the Celiac only and that she does not have Celiac and IBD.
  7. Thanks! I am trying to find evidence that my daughter was in fact misdiagnosed and that all of her colon inflammation is a result of the Celiac. The wait is torture!
  8. Curious to learn more about those diagnosed with Ulcerative Colitis/Indeterminate Colits that are also Celiac. Was the gluten-free diet enough to keep colon inflammation at bay? I know microscopic colitis is fairly common with Celiac, but I am more curious about those that presented with more severe UC/IC cases during colonoscopy. Thanks for any insight!
  9. Her 5 month follow-up on Celiac panel was that all weak positives were negative. Her ttg was over 100 (doesn't go over that) and was down to 33. Obviously we don't know where she started with that one whether it was thousands or 101. Her endomysial antibody IgA was still showing positive. So, definite improvement but still not normalized. In the IBD world she would be considered EXTREMELY lucky to be doing so well on mesalamine which is relatively benign and the only med that is in the line-up of treatment. I know this. I have read about microscopic colitis, but haven't seen much about m
  10. Cycling lady, I hope you see this! It's been emotional, parents of IBDers would see trying this as very controversial. You do not change treatment when your child is doing well and not flaring. I get this 100% and I would never knowingly under treat my daughter, but nothing adds up perfectly and I feel we can test this in as safe as a way as possible. If there is any chance he is correct it would also be wrong to be giving her meds she doesn't need.
  11. Hi all. I have posted here before about my 11yo being diagnosed with IBD and Celiac this past October. She has been a bit of an unusual case even within the typical variance of any IBD/Celiac patient. I am a voracious researcher and quite stubborn so I sought out a 3rd opinion recently because her first 2 GI's were never in agreement and always left me uneasy. I am more active on IBD forum, but curious to hear from the Celiac side of things as to how common a colitis to her degree is. Pediatric IBD tends to be much more aggressive than adult on-set in case that is new information to anyone.
  12. Thanks! She seems to be atypical at every turn. She is a 'silent celiac' and has no reaction to different foods, only ill during Crohn's flare-ups that led to diagnosis. It's only been 6 months but she's been great since taking mesalamine and going gluten-free. Her Crohn's labs have all normalized and her Celiac dropped significantly but not completely normal. It's a blessing and a curse to not react to gluten it seems. She's gained 9lbs and grown 3" since diagnosed, she's always been tall but she was very thin. Her coloring is better and she looks so much healthier now.
  13. My daughter has Celiac and Crohn's, diagnosed at the same time. It is true that Crohn's can cause villi blunting also. Crohn's can be anywhere from mouth to rectum. Hers was diagnosed through colonoscopy (hers is present in large intestine only) and she also had an MRE to rule out active disease in the small intestine.
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