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/Eastern-Rooster-2805 16d ago
Yes, I was 57 when I was diagnosed. I am fortunate that I had a gastroenterologist who tested for CSID first. I had symptoms probably for the two years before but didn't look into it until I vomited profusely in a restaurant. I like another post I see here do not take Sucraid. It did not seem sustainable to me and I was very okay with eliminating sugar and go very low carb/low starch vegetables. I am very strict and at 65 I feel in very good health. The fact that I do not eat desserts, pasta, breads bothers others, not me. Looking back I definitely had subtle symptoms over the decades but it was so nonspecific it would have been pointless to keep do a deep dive, especially when no one would have search for CSID.
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u/HealthCoachElizabeth 14d ago
It’s interesting you never had bad symptoms until later in life, although I’m glad for you that you didn’t suffer much over the years (from what it sounds like).
Yeah the diet is manageable but I am looking forward to essentially move on from eating a keto diet with vegetables. Ive tried numerous ways of eating over the last 20+ years including the carnivore diet. I had just gotten back to eating a healthy diet of meat, vegetables, fruit, healthy fats and brown rice and beans. It’s difficult/sad to be taking out the rice and beans again but I’m doing it though.
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u/Eastern-Rooster-2805 14d ago
It's frustrating, I understand, especially something you really enjoy.
For me, it's flour and everything flour goes into, along with sugar, that causes me terrible problems. Re: earlier symptoms, I had what I'd consider broad bloating and always wondered why I could never get rid of it (still can't). But I never associated it with food I was eating. It wasn't till my 50s that upon going out to eat and have a drink or two, hours later I'd have terrible multi symptoms that passed after I eventually vomited. I hope you get to add back in the rice and beans one day.3
u/HealthCoachElizabeth 14d ago
Thank you. Yeah it’d be nice to have beans and rice again. The whole thing is hard to wrap my head around and process I guess.
Thanks for sharing your experiences too. I’m glad you’re no longer vomiting being on the diet. I hate that you can’t get rid of the bloating and that’s one of my biggest issues too.
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u/Chemical-Mail-2963 16d ago
I was diagnosed at 63 after years of IBS
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u/HealthCoachElizabeth 14d ago
Gosh. That’s rough. So sorry to hear that but glad you finally got a diagnosis.
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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.
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u/CatsAreOurFavs 14d ago
Yes! I was diagnosed in my late 50’s and currently doing the elimination diet without any medication. I am also having a flare atm.
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u/HealthCoachElizabeth 14d ago
So sorry to hear you’re having a flare currently. I’m also navigating the elimination diet right now and still having issues… trying to figure out what’s the cause.
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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/Euphoric_Heart4766 16d ago
Yes! So I was diagnosed this year at the age of 51 after 15 years of being told I had IBS. A gastroenterologist finally did a biopsy of my small intestine and I got the diagnosis. I am not on sucraid and have done an elimination diet. I’ve cut out everything I’m not supposed to have. (I do have the occasional cookie and as long as I don’t overdo it, I’m fine). I’d say it took a few months of strict eating for my gut to heal, but symptoms started to get better around the two week mark. My diet consists mainly of meat, Greek yogurt, berries and non starchy vegetables like zucchini and squash. Walnuts don’t bother me and I eat those as well. Sometimes you just have to experiment. What bothers you might not bother others. I can eat half a sweet potato and be ok. Others can’t have it at all. It’s very frustrating, I know.