Carolina

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  1. 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.
  2. 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!
  3. 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!
  4. 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 more substantial colon inflammation presenting more like UC being misdiagnosed Celiac. I wish the pathology reports were more consistent, it is hard to identify all the terminology to differentiate. The Lialda definitely got the colon inflammation under control, now the question is can it be maintained with gluten-free diet only. Adding in I know she needs the diet for the sake of being a Celiac, just commenting about whether we have another disease on top or not causing the colon issues.
  5. 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.
  6. 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. Summary I wrote for the Pediatric IBD folks... Last May she had 2-3 weeks of diarrhea, by the time we could get into GI she was better so we canceled. Fast forward to August she had another week of diarrhea (mild). I was concerned given previous episode, but thought maybe it was nerves of starting school as she is an anxious child. Then October she has another week of diarrhea so we then head into GI. Prior to flares, only symptoms I can think of is paleness and dark eye circles for 2-3 years prior. We were treating with sublingual allergy drops because she has tons of environmental allergies year-round so we attributed her palor to that. She has been consistent on height curve since birth, very slow decline on weight over last few years. First GI does Celiac blood panel. Comes back positive a few days before scheduled colonoscopy/endoscopy. Thinking we are going in confirming a Celiac diagnosis and he comes out saying it is IBD and he thinks the Celiac blood panel was a false positive. This never made sense to me, her Celiac numbers were high and she had villi atrophy. He says it is Crohn's. I push back and say I want to at least try the gluten-free diet with meds and am up front that we will seek a 2nd option. He wanted steroid/Lialda/partial enteral nutrition. I pushed back on steroid as she was no longer flaring and new on the journey of understanding the importance of getting the inflammation in check quickly. I agree to Lialda and shakes and he appeases me with gluten-free diet. Meanwhile he is clear we will have to jump ship quickly if anything pops up in small bowel with MRE. Second GI I call daily and get in quickly prior to MRE. She says 100% she has Celiac with numbers as high as hers were. She says it is Indeterminate Colits (patchy like Crohn's and UC like inflammation). She says she suspects the MRE will be clear and that ends up being the case a couple weeks later. At diagnosis her CRP was normal, slightly elevated Sed-Rate and fecal of 178. 2 months out on Lialda and gluten-free diet her fecal was 68 (normal). 5 months out her fecal is 19! Meanwhile her coloring is normal, she's gained 9lbs and is back on the weigh percentile sh was at, and grown 3". In 5 months she has grown and gained that much. She went from 75% in height to almost 80% so higher than ever too. Things have obviously been going well. The Celiac has been the bigger life change since the IBD has been a non-issue since diagnosis (she was out of flare prior to scopes). It bothered me the GI's didn't agree and for peace of mind I had to torture myself and seek out a 3rd opinion. We went to the Chief of Peds at another hospital and this is where things went crazy... He said flat out the 1st was wrong, she is textbook Celiac in terms of her endoscopy results. I said Crohn's can cause villi atrophy too. He said yes, but her bloodwork is also clear. He then went on to say what you have said that there is no way she has Crohn's and is doing this well on Mesalamine. He said her 2nd GI was closer calling it Indeterminate Colitis and Celiac. The difference in his opinion is that the root cause of the colon inflammation is the Celiac and not IBD. He recommended weaning to 1 Lialda for 1 month. We will do fecal then. Then we will do another fecal 1 month out after discontinuing Lialda. If the inflammation returns then we know it is Indeterminate Colitis, but he strongly suspects it is not. He made a comment that reminded me of Occam's Razor, basically the simplest explanation is often correct and all her symptoms can be explained from the Celiac only. I am trying not to get my hopes up, but it would be incredibly irresponsible to suggest this if he didn't feel strongly. I was hoping to come out of that visit with 1 less diagnosis but I didn't dream it could be the IBD. We shall see, for once I wish I could fast forward time to see how this plays out.
  7. 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.
  8. 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.
  9. 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 up instead of always guessing. I did wonder about the blood test or if there were other ways (patchiness if that exists or quality of the villi) that lead them to a Celiac versus Crohn's diagnosis based on the villi presentation. My friend is actually hypervigilant, I was honestly shocked she ate the pie. That is definitely not her norm. I wouldn't think the Crohn's med is helping much, it is formulated so that the coating dissolves at a certain pH so it gets to where it needs to be in the colon. I wondered when I was talking to my husband, if they were to scope her again down the road and she still had villi atrophy despite declining blood work, would that tell us that she was one of the Celiacs that don't recover or that the atrophy was the Crohn's all along. She will have many more scopes in the years ahead to stay on top of the IBD piece. So many questions as you can see.
  10. 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 on the others. She had no known reaction to gluten ever. The tests/scopes were done after 2 bloody diarrhea/abdominal cramp flare-ups that led to the IBD diagnosis. The Pediatric GI that performed the scopes thought the Celiac was a false positive from the IBD. We switched to a female GI and she thought it was correct. My daughter has been on a drug for the IBD and a gluten-free diet for 6 months and is doing great. I plan to stick with a gluten-free diet regardless, but I still have a little nagging doubt and would love to know for sure. She is very compliant at this age, but I can easily see where being a 'silent Celiac' could be an issue as a teen/young adult especially when there is no adverse reaction. This has all come up again because we went to a friends house that has Celiac a couple weeks ago. Another friend brought a homemade pie that was supposed to be gluten-free. It was based on ingredients, but must have been a cross-contamination issue. My friend was throwing up and sick for days and my daughter was fine. I realize some are more effected than others but it just always keeps me guessing based on the fact that she's never seemingly had a reaction, her first GI thought it was a false positive, and Crohn's can also cause villi atrophy. Her Celiac bloodwork was re-tested 5 months out, all her weak positives were negative and the over 100 was 33. I am not sure this really means anything in regards to whether the diagnosis is correct or not? Is there anything else that can be done to confirm one way or another. I know there are genetic tests. We have no known family with the disease and the immediate family was tested and all negative. Again, we plan to remain gluten-free regardless as it is beneficial to IBD and anyone really, it's purely my desire to have a definitive answer. ETA: Coming back to add in one other thing in case it is helpful. Initial GI did the Celiac panel, we went into scopes thinking this would just be confirmation. After scopes GI said it was "unremarkable" as far as Celiac. I was surprised when we got the biopsy results back and it said "diffuse villous atropy" but again Crohn's can also cause that.
  11. 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, she is so over them doing the same one 2x a day. She's gained 9 much needed pounds in the last 5 months though. Sort of hoping she can drop to 1 a day at her appointment next week. Had she not had the Crohn's flare-up I suspect it would have been a long time before we ever discovered the Celiac. She does not have any obvious reaction at all. I guess that is a good thing. The only time she has been in distress is during a Crohn's flare-up.
  12. 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, so wish I could know what that over 100 really was originally for additional perspective.
  13. 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 show beyond 100) to 33 (both positive but improved) Transglutaminase (tTg) IgG - 8 now 5 (weak positive to negative) Endomysial Antibody, IgA - postive (no change) Immunoglobulin A Serum - 178 to 251 (normal to now HIGH) not sure what this is about, could be the IBD but she is doing well with her Crohn's according to that bloodwork and stool test.
  14. 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-contamination I might be missing. Adding in that she has never had an obvious reaction to gluten. Had we not had the Crohn's diagnosis I suspect it would have gone unchecked a lot longer.
  15. 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, but I do not have the new results back. The Endomysial Antibody, IgA is still showing positive...is this concerning? To be honest, I am over-researched in IBD and under-researched in Celiac. It is a steep learning curve for both. Can someone please spoon feed me what I need to know on this? haha