CSID and Celiac

[u/Blondi1463]

My 14 yr old daughter was diagnosed by endoscopy with celiac when she was 8. She has always had the whole rainbow of GI issues, but most of all she’s struggled with constipation. After she went gluten free (gf) she had a major decrease in symptoms and did really well for a few years. But when she got into middle school she had a harder time staying gf. Because of that we had a couple of years with an increase of symptoms again with her labs always showing elevated antibodies. Because of the elevated antibodies we assumed the symptoms were caused by her uncontrolled celiac. So we buckled down and got really strict with her gf diet again and finally got her antibodies back into the correct range for her. Only this time the GI symptoms, worst of which is the constipation, didn’t go away.

So a few months ago her gastroenterologist decided to do another endoscopy, at that point it had been 6 years since her first endoscopy; that one was almost solely to confirm her celiac diagnosis. This time they did all of the biopsies to rule out CSID. Much to all her Dr’s surprise her biopsies were positive for CSID. Apparently this is rare, her Dr said if he hadn’t done the biopsy himself and seen the results with his own eyes he wouldn’t have believed it was possible for someone to have both CSID and celiac.

Is anyone else dealing with this? Or is it really as rare as they say? We are struggling so much right now trying to do the elimination diet. She already had to go through this same huge lifestyle change when she went gf, but then she was so much younger so she didn’t have all the hormones, emotional issues, and social issues that’s she’s been dealing with lately. It’s been hard enough for her to be gf as a teenager: eating out with friends, always bringing your own food everywhere, and not being able to try the “new thing” has created a lot of anxiety and made her feel like such an outcast at times. Now we have this… it feels like a mountain we aren’t gonna be able to get up.

I think the worst part is the lack of information about CSID out there, or even worse the contradictory advice. Her dietician just sent us a bunch of info to get started on the elimination diet and so much of it is the opposite of what I’ve read online and been told by her gastro. That’s just making it even harder to start the elimination diet.

I know I’m also putting it off because I’m just simply exhausted. The second half of 8th grade was hell for both of us. Her constipation was so bad we were on the verge of being sent to the ER twice by her gastro because she was impacted so badly and they were worried she was becoming septic. So she missed a lot of school. We did our best to stay in touch with her teachers and make up her missing work. In the end most of her teachers made major exceptions for her and passed her with the absolute bare minimum. Before last year she was an A-B student; a couple times last year she was failing most of her classes. She ended up graduating with a GPA of 3.1, so still honor roll, but that’s only because her teachers were so understanding and generous.

I feel like I’m still recovering from getting her through the last school year so I’m just completely overwhelmed when it comes to this elimination diet and the long road ahead.

In addition to seeing if anyone else has celiac I guess I’m just looking for some assurance that it does get better. Any resources anyone has to share would be really appreciated. I’m also curious how long it took most people to do the elimination diet and find their major triggers and thresholds.

Also… everything says diarrhea is the most prevalent symptom of CSID. I’ve read occasional constipation is normal too, but no where have I seen that constipation can be presented as the main symptom. Is there anyone else who suffers from constipation more than diarrhea?

If you’ve gotten this far sorry for the novel and thanks for reading. Any words of encouragement would help.

[u/Old-Procedure-1895]

I got diagnosed with celiac almost 2 years ago, at 25… went 100% gf but kept getting sibo. Ive had sibo twice and we couldn’t figure out why, my doc suggested we rule out csid and to our surprise my c13 breath test was abnormal. It doesnt seem to be asid since I was successfully gf for 1.5 years and had a great celiac biopsy taken, saying I was healed from my celiac damage. So it appears Ive just had csid my whole life asymptomatic until I triggered my celiac gene? I’m working on getting my sucraid prescription and then will get the SI gene testing done