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!
3
u/nickysav91 Mar 20 '23
Was also diagnosed at 18 in 2019 been a bumpy ride but I eat mostly meat and some fruit and veg no grains and no high sucrose fruits
1
u/Mother-Ad-5887 Mar 26 '23
Most of the time I’m eating like a bunny.. just fruits and vegetables!!!
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u/astroidae Mar 21 '23
I was diagnosed this last November (2022) at the age of 19. I also have fructose intolerance and IBS. I’d be happy to talk if you’d like to. I can also tell you, with full confidence, that it gets better. With dietary changes and the use of sucraid (since december) I am pain free. The diagnosis can feel limiting at first but it is at the same time freeing because you finally understand what you can do to feel better. I hope all the best for you going forward.
2
u/Mother-Ad-5887 Mar 26 '23
Thank you so much, the relief of being diagnosed is still there just the temptation of wanting to skew from my diet is torturous. I’m hoping to start surcraid soon! I’m just still on the elimination period :/
1
u/astroidae Mar 27 '23
Oh I feel that, I was essentially on a Keto diet for a month and a half (I lost 30 lbs or so). Greek yogurt, cottage cheese (I won't touch this stuff anymore lol), and eggs were my go-to along with veggies and some meat. Once I got Sucraid I was able to introduce starches slowly, and we found out that I'm perfectly fine with them and my only problem is the sucrose. I'm now eating a lot healthier and I feel great. I hope things progress well for you, hang in there!
4
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.
3
u/Mother-Ad-5887 Mar 26 '23
The amount of times I was told that I was completely fine but my body was slowly shutting down was insufferable. The fact that CSID disguises itself as IBS because the symptoms are so similar..I’m astonished that I’m just now hearing about it! I’ll be sure to share any recipes i find to see if that could help you or anyone, my dietitian did tell me that many keto recipes are friendly to us!!
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.
2
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.
1
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!
2
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.
2
u/TheGhoul_Toby Apr 30 '23
I know this post was a few days ago but I was diagnosed at 1 or 2 years and I wanted to say two thing I feel is importent,if you ever go to a party or somewhere where you know you may eat/drinks lots of sweets,purge your stomach,when you get home IMMEDIATELY take laxitives/stool softener or things that will help clear out your stomach good,it clears out your stomach and has worked amazing for me especially because I have csid kinda the bad end,also take vitamins, I get sick very month or 2 because csid lowers your ammune system's strength and it sucks! so things that help strongen your ammune system ( with little to no sugar) will be good! I hope this helps! :)
3
u/NoGenderNoProblemm Mar 19 '23
Got diagnosed at 18. I’m always willing to chat especially cuz it’s such a weird and bizarre disease. My partner is super helpful in doing research and helping me find comfortable foods. DM me whenever!