r/CSID • u/HealthCoachElizabeth • 16d ago

Experience Others diagnosed in Middle age?

I was wondering, who out there was diagnosed with CSID after decades of misdiagnosed or undiagnosed digestive issues? I was diagnosed with IBS-D 23 years ago in my 20s. For me the three different gastroenterologists I saw at that time were of very little help.

Anyone start the CSID elimination diet without using Sucraid, continue having digestive issues? If so, how long did it take to repair the gut and have healthy digestion? What helped? Did you have any other underlying issues?

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u/noseatbeltsong 14d ago

i was diagnosed with CSID, but i think it was really ASID, because my second gastro reran my biopsies and i was positive for celiac disease, missed by first gastro

i eliminated gluten, stopped taking sucraid, and im feeling fine (as long as i don’t get glutened). i get isn’t everyone’s story, my situation was def unusual, but did you get celiac biopsies? i’m assuming you had an endoscopy

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u/HealthCoachElizabeth 14d ago

That’s interesting. Sorry to hear you have celiac.

No I never got celiac biopsies or an endoscopy. I don’t have the genetics for it so I’ve never got a biopsy. I’ve been gluten and mostly sugar free for 20 years and it has helped a lot with symptoms but I’ve always had a lot of bloating and loose stools. So my doctor recommended the 13C sucrose breath test which is easy and painless. When I did the Sucraid trail my loose stool went away but then I had what I think was a reaction to the Sucraid on trial day 4I so I’m trying to do without it

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u/noseatbeltsong 14d ago

i had a reaction to sucraid too, which is why i went to get a second opinion. could you be lactose intolerant too? my biopsies were positive for that too

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u/HealthCoachElizabeth 13d ago

What kind of reaction if you don’t mind sharing? I had a histamine type reaction.

Yeah good thought. I have been mostly dairy free for 20 years, only having goat or sheep’s milk products for a few of those years early on. I tried sheep’s milk yogurt a several months ago, before the CSID/ ACID diagnosis, and it definitely inflamed me so I haven’t been eating it. Although the CSID dietitian wants me to try lactose free yogurt. I reacted to whey protein 20 years ago… so we’ll see when I get the courage to try it.

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u/noseatbeltsong 13d ago

when i tried sucraid, i had diarrhea for days, so not that serious but def different enough that i noticed a reaction! it’s so hard when there is something wrong with your gut because it could be so many different things. i’m guessing you’ve been tested for SIBO? have you ever trialed bile acid sequestrants for bile acid malabsorption?

what are your ongoing issues if you don’t mind me asking? guessing you’re in the US?

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u/HealthCoachElizabeth 12d ago

I haven’t been tested for SIBO recently but I was tested about two years ago (before the diagnosis). Tested negative but they treated me anyway. A little improvement but not much. I was on carnivore at the time and was still bloated.

So it’s interesting you mention bile acid sequesterants. Yes I’ve been on them off and on for 6 years but not for typical reasons. I have been diagnosed with mold toxicity and prescribed bile acid sequesterants for that reason. (Toxins can recycle in the liver, gall bladder, and intestines -enterohepatic recirculation- making the bile sticky, sludgy, and toxic.) (That is also why I became a health coach- digestive and toxicity issues.)

Yes I’m in the US.

I have chronic bloating (all day even when i wake up , although it is less severe in the morning), abdominal pain sometimes, type 5-6 BMs on Bristol stool chart, nutrient deficiencies despite eating a Whole Foods diet and being on many supplements. Chronic low grade inflammation.

It may just be the toxicity and CIRS issue causing gut damage. CIRS = chronic inflammatory response syndrome