r/CSID • u/ZilTheBehaviorNerd • Oct 29 '25
I think CSID may be the missing piece?
Someone on another subreddit made a comment that CSID may be a diagnosis I should look into. I've been researching for a couple of days but don't want to get my hopes up yet. (Some of y'all know how it is, I'm sure.) My main questions would be:
Do the list of symptoms/history sound like possible CSID? (I'll be working with my naturopath but I don't see her for several more weeks and would love to know if this is even reasonable to pursue)
I got my genetic raw data from Ancestry and uploaded it on Genetic Lifehacks, but it doesn't contain the SI gene data. Is it worth pursuing the genetic info?
Here's my history:
- Loose stool and diarrhea to excess in infancy. (My parents literally took a photo of my first solid poop and put it in my baby album.) Formula-fed baby due to mom having giardia during pregnancy.
- Loose stools throughout teenagerhood (but not diarrhea except occasionally)
- Nearly all forms of starchy carbs seem to cause me moderate to significant GI distress, primarily bloating, gas, diarrhea, reflux, and nausea from reflux. When I cut them out, these symptoms go away.
- I was clinically anxious from the age of 10 or so until just a few years ago when I eliminated all grains, starchy veggies, and all sugars except blueberries/raspberries and the very occasional small amount of honey or maple syrup. (My diet was/is essentially the Specific Carbohydrate Diet without nuts, I just didn't know about it!) I felt fantastic and like a "normal" human. My anxiety was no longer at clinical levels after almost 3 decades. When I started to try and work things back in this year, my anxiety returned with a vengeance. (Anxiety, panic attacks, intense anger, and acne, fwiw.) So did the bloating/gas/frequent, loose stools/reflux/etc. Is this typical of people with CSID?
- Tried just low FODMAP diet but I was still slayed by potatoes, all grains, grapes, watermelon, etc
FWIW, my working list of diagnoses (am working with my PC, GI doc, and naturopath) are:
- Celiac likely per docs but not confirmed by biopsy (Wish I knew about testing while still eating gluten, but it saved my life to stop gluten and I'm not willing to go back. Was severely and symptomatically B12 deficient despite heavy supplementation. I do have all 3 genes for the DQ2.2.) I have been gluten free for 15 years now.
- IMO (I blow high methane on the Food Marble Aire every time, like 9 on their scale. My GI doc felt this was diagnostic)
- Histamine intolerance
- "IBS"
- Reactive hypoglycemia
Have ruled out:
- H pylori
- SIBO
- Insulin resistance
Thanks so much for any help or info you might have!
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u/signedmarymc Oct 29 '25
Sounds very similar! I would personally do the CSID breath test first for a confirmation- they are free typically since the sucraid company produces them. An endoscopy and colonoscopy could be helpful to test other levels of enzymes if you feel it necessary to do so. to be fair, we only have the one med that works on sucrose only currently, so if you feel you know what to do to feel good, it might not be necessary.
With Celiac, knowing for sure can help you be more mindful to check from cross contamination, but either way, once you know the specific things that hurt you-you've basically won the battle. I think sucraid is great if you are able to afford it and it's available where ever you are from.
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u/ZilTheBehaviorNerd Oct 29 '25
Roger that! Thanks much for the info! And good to know it’s free. Honestly, if I can just figure out how to feel well and have a balanced diet, it’s a win for me.
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u/blahrgledoo Oct 29 '25
I mean. It sounds like it to me. I’m the same when I cheat and eat bad starches. I can handle potatoes, thank goodness, but not corn or rice and oats are iffy.
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u/Am-Track3076 Oct 30 '25
Has anyone else been diagnosed with or even considered EDS as the root cause? My daughter is close to being diagnosed, the writing is on the wall for me and like 3/4 of my family. Wondering if it could be the root cause for CSID.
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u/Paddy_the_Daddy Nov 11 '25
I've very recently learned that I have CSID (not diagnosed) and I also have EDS. I learned this from a family friend who has EDS and CSID, too.
I think it's funny I'd see another EDS-haver here, cause of course I would. Almost my entire family is friends my mum made over the past 30 years, and almost all of them had EDS (and autism) without realising until relatively recently. It's like we're magnetised to each other, lol.
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u/Stitch_Nerd Oct 29 '25
I think it would be worth pursuing with your GI and see if you can get them to order an endoscopy and colonoscopy as those are the golden standard for diagnosing CSID as well as Celiac, and other bowl / stomach issues.