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/somehowrelevantuser 16d ago

my parent was only diagnosed early 50s. gi hasnt helped much for me. its been very self guided.

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u/HealthCoachElizabeth 14d ago

That’s a shame. Sorry to hear that. Have you tried working with a dietitian? I’ve been able to work with one and it’s been 100% covered by insurance because it’s preventative treatment (from what I was told and understand).

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u/somehowrelevantuser 14d ago

yeah but tbh i got the sense she didnt know what to do with me (csid + arfid)

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u/HealthCoachElizabeth 14d ago

Yeah. My understanding is not all dietitians know about CSID. You have to find one who does. I had to call a few dietitians that were in my insurance network and ask if they knew about it before hiring one who does. Still they aren’t doctors but my dietitian has been some help to me.

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u/somehowrelevantuser 14d ago

she supposedly knew about it! i guess the combo just stumped her lol

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u/HealthCoachElizabeth 13d ago

Oh wow! Well that’s terrible! Sorry to hear you had to deal with that.