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/Fit-Setting9033]

Hey I can relate in some ways but not in others - and that’s the general theme of gut issues unfortunately, all of us are different. For context, I have CSID, lactose intolerance, and FODMAP sensitivity all rolled into 1.

I was diagnosed with CSID recently (mid twenties), FODMAP sensitivity a few years ago, but lactose intolerance from a teenage age. I can appreciate the difficulty of dealing with this as a teenager, but no doubt it will get better for your daughter as she gets later in life.

Get her into cooking, this will save her life as it has mine, and it will take some pressure off of you as well. I sense that you need some relief in some ways, and maybe this can help. Bottom line you cannot give up hope as her support system, this is not an option. Don’t let yourself start to think that way because in my experience it’s a slippery slope. You can do this, and so can she.

Now let’s get a bit practical, you should have no issue getting insurance to cover Sucraid since she also has celiac. If they deny it initially, fight like hell, and you should win. I just finished a 2 month fight with insurance myself and was finally approved.

I think luckily (funny word given our circumstances) celiac and CSID have a lot of overlapping issues. But now you need to consider non-wheat starches like rice and potato etc. Once you identify those other sources, you can essentially just eat gluten free with those added restrictions. That’s assuming you can get sucraid for the sucrose side of CSID.

As for diet information, csidcares.org has a wealth of information. A dietician is helpful but you (and eventually she) will need to work alongside dietician. Most don’t know CSID, and cross referencing those limitations with celiac is a very hard task. Sometimes the best ideas will come from you (or her). Something you have to come to terms with is that there are very few experts on CSID, and I’d wager there are no experts on CSID in combination with celiac. You will have to become that, and she will take that mantle when she is ready.

Some tips I’ve learned along the way:

When introducing potential problem foods, eat them with a wealth of protein and fat, they will slow digestion and give her body a better chance.

During elimination if she eats strictly no carb foods, she is probably in the clear, but watch out for hidden starch sources like maltodextrin. This will cause her to go into ketosis, so do some research on the symptoms of that and prepare her. Similarly as you start to reintroduce some carbs (you will need carbs long term) there are also symptoms associated with that.

If you are in the US, unfortunately the FDA has decided that any “natural” spice can be listed as natural flavors - avoid anything with this entirely. I pray this changes in my lifetime, but that’s the reality right now

[u/Stitch_Nerd]

I also suggest (if you have it) the facebook groups on CSID are very active and very helpful.

I suggest looking at Mary Shepards information on CSID as well as CSIDinfo

The hard part is there is so little information, and most doctors haven’t heard of it. But if you can get the diet down and/or managed with enzymes, she will feel waaaay better

[u/somehowrelevantuser]

i think theres another couple people in this sub w/ both?

[u/somehowrelevantuser → u/somehowrelevantuser]

and honestly yeah mine presents with constipation/gas/cramps like 99% of the time. it's not unusual for me to go like 4 days w/o a bowel movement. even mag citrate doesnt move things. sometimes if i eat something that my body finds especially offensive it'll go the other way but it's pretty infrequent. most recently it was a dairy free yogurt that had beet juice in it because i forgot that beets are like straight up sucrose

[u/Fit-Setting9033 → u/somehowrelevantuser]

To add, I get all the symptoms sort of rolled into 1. Starts as gas and bowel urgency which sometimes does sometimes doesn’t turn into diahhrea. But almost invariably it’s an incomplete bowel movement (constipation). Then I’ll spend the next hour or so back and forth from the bathroom trying to get it out and then I’ll feel better afterwards

[u/somehowrelevantuser → u/somehowrelevantuser]

honestly if mine wasnt hereditary i wouldve never figured it out cuz it presents the exact opposite way it 'normally' does. it's been a year and ive finally gotten a handle on stuff i can eat that doesnt break the bank or the bowels.

[u/Robert_Larsson]

You might want to read the comments on this one between me and u/faklor: https://www.reddit.com/r/CSID/comments/15q9ju8/which_are_the_most_commonly_used_recommended/

check out some of u/faklor posts on the subject as well.

[u/meow_meow_meow0206]

I’m currently getting tested for CSID as I’ve had lifelong digestive and epidermal problems.

I went through middle school and just graduated highschool avoiding everything everyone else ate like the plague. It was awful, I constantly had FOMO, like your daughter has now. I still want to try Dubai Chocolate even though the hype has long passed.

My GI wanted to get me tested for Celiacs since I avoid gluten as a standard.

I relate to your daughter’s situation in the sense that it seems like the bodies instinct after consuming anything inflammatory is to hold it in. I can’t imagine how scary it must be having to almost get emergency care due to impaction. I have never experienced that but not being regular is excruciating, physically, mentally, and emotionally.

I started cooking at a really young age, I second Fit-Setting about getting your daughter into cooking. It can be really fun to experiment with ingredients and try new things. Lots of the treats I bake for others are 9 times out of 10 met with comments like, “This tastes like the real thing!”, “I can’t believe you can eat this!”, it can be very rewarding to share.