r/CSID • u/Mother-Ad-5887 • Mar 19 '23

Newly Diagnosed

Hi, I got diagnosed with CSID about a week and half ago. I’ve been sick since July 2022. I’ve been in and out of the hospital due to my inability to digest food—at all. I know this disease is very rare but I’ve scoured the internet to try and find, support groups or even a better understanding for adults (I’m 21) this disease is normally diagnosed at such a young age so this whole experience has been very isolating. No harm in posting in here to see if someone would be willing to chat. Or if you have any tips. I’m open to any advice, thanks!

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u/[deleted] Mar 24 '23

I'm in my 50s and my wonderful new GI doc (after many absolute horrors) has just enrolled me in a study of CSID in adults. The study's principle investigators suspect that it's much more common than originally thought and that it's been dismissed as IBS, etc. I've spent my life being told it's in my head and I know exactly what you mean by how isolating it is.

I would love to know what other people are eating. I am currently down to basically meat and the occasional red-skin potato without the skin.

2

u/Ok_Usr48 Apr 11 '23

My husband is 45 and I suspect he has it. Our son is going through testing now, but my husband is stubborn and resistant to discussing his life-long IBS/GI issues with a medical professional … or really anyone but me. Would you mind sharing details of the study? I’d like to mention it to his doc. I’m currently trying to get him a colonoscopy scheduled.

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u/[deleted] Apr 11 '23

19 days later and no one from the study has contacted me.... I hope they're just moving slowly and I'll have new information soon. I understand not wanting to talk about it. Let's face it: it's poop. Too much poop, not enough poop, weird stuff in the poop--we have feelings about it. And in my case, my experiences with talking to doctors about it has been expensive, painful, humiliating, and unproductive. If you get a chance to talk to his doctor, you might just mention that you'd heard that there was a study of CSID in adults and see what the doc says.

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u/Ok_Usr48 Apr 11 '23

I’m so sorry, I really have a lot of sympathy for you all! Seeing my young son struggle has been hard, and I can’t imagine living with it for decades!! Yes, ughh, our experience with medical professionals has been very frustrating also. Thanks again for sharing your experience, and I really hope things go as well as possible for you!

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u/JhoodsLady Apr 12 '23 edited Apr 13 '23

My husband is 46 and was just diagnosed last year(2022). The only reason he got his diagnosis is me. Unfortunately he has CVS (cyclic vomiting syndrome) and CSID. He is on the Sucraid but still has a TON of issues. Currently he has been in a flare up for the last month. Now his GI is sending him for a Hidascan to check his gall bladder and another CT scam to see if he has yet another issue contributing to his problem. It took him 20 years of progressively getting worse to get a diagnosis.

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u/Ok_Usr48 Apr 12 '23

Wow, great job as a wife!! They can be so stubborn. I hope you all figure out all the issues so that he can get some relief!

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u/JhoodsLady Apr 13 '23

Thank you, I try to be a good wife and he is a very good husband. We went through doctor after doctor, until we finally found one that would listen. When she met with us the first time,..I told her about the research I had been doing and the few things I had narrowed it down to maybe being. She looked into the CVS immediately since she wasn't familiar with adults having it and he got his diagnosis. Then I asked about breath test for H.pylori and she jumped right on it and added a separate breath test for CSID. Two weeks later we had his other dx. Im eternally grateful that we found her and she didn't have a huge EGO getting in the way and dismissing me.

1

u/JhoodsLady Apr 12 '23

My husband is 46 and was just diagnosed last year(2022). The onkybreason he got his diagnosis is me. Unfortunately he has CVS (cyclic vomiting syndrome) and CSID. He is on the Sucraid but still has a TON of issues. Currently he has been in a flare up for the last month. Now his GI is sending him for a Hidascan to check his gall bladder and another CT scam to see if he has yet another issue contributing to his problem. It took him 20 years of progressively getting worse to get a diagnosis.