Questioning Diagnosis?

[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 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. 

 

 

[cyclinglady]

I think that the “proof” she has celiac disease was her very high TTG result at diagnosis and during follow-up testing it has declined dramatically on the gluten-free diet.  The TTG can be elevated due to other illnesses, like Crohn’s but that elevation is usually barely positive and not a result over 100 from my research (I am not a medical doctor).  

I probably told you about my niece who has Crohn’s (celiac disease ruled out for now).   She has none of the classic Crohn’s symptoms which really threw her parents off.  It continues to throw her doctor off too (her 4th GI).  She does not have any daily symptoms.  She does get an occasional flare  ( every few months) that can last less than 24 hours.  Yet the damage seen on the pill camera was dramatic.   In the beginning she had to remind her doctor that she has no daily pain.  Nothing.   We are hoping that nothing changes for her.  It did make it difficult for her and for her parents to decide to do the Crohn’s treatment (biologic) when she was symptom free.  She had to rely on the lab results and not her symptoms.

In your daughter’s case, I would have her stay the course because I think she probably has both.  But let’s say she does not have celiac disease.  That recent small study out of Scripps in San Diego  with IBD patients on an AIP diet (which is gluten-free) going into remission was amazing.  That alone, would keep me on the diet (to avoid Crohn’s progression).  

Finally, I had no GI symptoms at the time I was diagnosed.  I seriously think symptoms can ebb and flow.  Is she on any medications for Crohn’s that might also help avoid any upper GI symptoms?  Why didn’t she react to that pie?  Perhaps it is because she has a healed small intestine while your celiac friend is an adult who might still have intestinal damage (probably yes, if she takes risks like accepting a gluten-free pie baked by a non-celiac! ).  

 

 

[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 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.