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Carolina

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by Carolina

  1. Carolina
    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...
  2. Carolina
    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...
  3. Carolina
    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. Carolina
  5. Carolina
  6. Carolina
    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 l...
  7. Carolina
    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...
  8. Carolina
    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...
  9. Carolina
    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!
  10. Carolina
    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!
  11. Carolina
    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...
  12. Carolina
    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...
  13. Carolina
    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...
  14. Carolina
    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...
  15. Carolina
    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.
  16. Carolina
    Yes, we plan to stay the course. She is doing so well that I definitely don't want to change a thing! I have googled the heck out of this topic but there is so little out there. Again, this is just for knowings sake for the years ahead when she may be tempted to stray if that were to happen. It would also just offer more clarity to any IBD symptoms that crop...
  17. Carolina
    Hi all. I've posted here before but quick summary is that my 11yo was diagnosed with IBD (Crohn's or UC to be determined, not uncommon to be unclear in kids when caught early and confined to colon only). This diagnosis is absolutely correct, no question based on scopes. Her Celiac Panel came back as high (over 100) on tTG IgA and negative or weak positives...
  18. Carolina
    Yes, I heard about that camp and there is another for IBD kids. Somehow despite having Crohn's and Celiac she doesn't seem to associate herself much with the diseases for better or worse. She embraced the gluten-free diet very well and her Crohn's meds. Her only grievance has been the nutrition shakes she has to drink for colon inflammation and weight gain...
  19. Carolina
    Thank you! I was hoping you would respond. Yes, I see what you mean about the Immunoglobulin but it surprises me it went from normal to high. She has had some on and off joint pain that is stressing me out as it is fairly common to have arthritis with IBD. Hoping this change isn't an indication of that. Glad to hear the Celiac numbers look good otherwise...
  20. Carolina
    I finally have all the results back, if anyone has any questions I should be asking please let me know. These are levels at diagnosis versus 5 months out on gluten-free diet. Antigliadin AbS, IgA - 6 now 5 (both negative) Antigliadin Abs, IgG - 24 now 12 (weak positive to negative) Transglutaminase tTG IgA - greater than 100 (doesn't...
  21. Carolina
    Thank you so much, great to know! I know I had read it is highly variable how quickly things heal. The #1 is that her Crohn's is in a great place (knock on wood), her levels are completely normalized with that. I wasn't sure which of these might be an indicator of how her diet is going. I actually completely trust her away from home, more worried about cross...
  22. Carolina
    Hi all, I should wait until I get all the results back but I am impatient. My daughter has IBD and Celiac diagnosed in October. They just retested Celiac panel for first time. She said the Antigliadin Abs, IgG went from 24 to 12 (now normal). She had a weak positive with the Transglutaminase (tTG) IgG and a very high Translutaminase tTg igA before,...
  23. Carolina
    Yes, she tested positive and yes she has now been eating gluten-free for 5 months since diagnosis. She is being treated for the Crohn's, absolutely. This is just the first time we are re-doing the Celiac blood test since diagnosis.
  24. Carolina
    Yes, she tested positive and yes she has now been eating gluten-free for 5 months since diagnosis. She is being treated for the Crohn's, absolutely. This is just the first time we are re-doing the Celiac blood test since diagnosis.
  25. Carolina
    Hi all. My daughter was diagnosed with Irritable Bowel Disease, currently listed as Indeterminate but leaning towards Crohn's as well as Celiac Disease in October. We will be repeating the Celiac panel in a few weeks and I am wondering how to set my expectations. Her Ped GI did not want to run the Celiac Panel any earlier as she said it would cause unnecessary...
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