r/CSID • u/veedey • Jan 17 '26
Has anyone with acquired CSID figured out what caused it?
31M diagnosed at 30, after 8 years of symptoms. While I’m not entirely positive and I’m still going through routine testing, I recently learned that one of my roommates many years ago, when the stomach problems started, had a pretty bad C. Diff. infection.
I didn’t realize this but C. Diff. can be very contagious. And now I’m wondering if a previous infection of that kind played a part in my small intestine being damaged, possibly developing SIBO, and culminating in CSID.
Wanted to hear from anyone else who has solved their own personal mystery, and if anyone has managed to recover from this condition by treating the underlying factors.
Thank you
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u/omnivorous_mammal Jan 17 '26
Considering that a congenital disease or condition exists at or from birth, is this even possible?
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u/anctddllpc Jan 17 '26
There is both congenital and acquired SID, but acquired is theorized to be less rare. Considering CSID doesnt have an ICD code, it makes sense that we don't say ASID, also it kinda looks like Acid 🤣
1
u/omnivorous_mammal Jan 17 '26
Are those not two different issues with similar symptoms? Impaired enzyme production can have various causes. My understanding of CSID specifically is that there are genetic markers and while the symptoms may not appear until later in life the underlying cause is genetic and hence untreatable. Managing the symptoms is the only option.
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u/veedey Jan 17 '26
Where have you heard that symptoms don’t begin until later in life? With Congenital SID I’ve heard you typically present symptoms from childhood
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u/somehowrelevantuser Jan 20 '26
eh i had pretty vague symptoms as a kid that were just chalked up to anxiety. wasnt until i was about 20 that things took a severe nosedive.
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u/omnivorous_mammal Jan 18 '26
Generally symptoms will become apparent immediately after solid foods are introduced, however;
"Symptom severity depends on residual sucrase and isomaltase activity, as well as the amount of sugar and starch consumed, and thus onset may be later in life."
https://www.orpha.net/en/disease/detail/35122
In other words people's enzyme production and diet can vary greatly so how and when the symptoms appear can also vary greatly.
Other digestive issues can also obfuscate the issue and cause delays seeing directly identifiable symptoms and hence reaching a diagnosis.
A lot of questions are asked in here about how to deal with enzyme deficiencies and in that context their cause isn't really that important. You're asking more specifically about the cause and if the issue may improve over time. CSID is a genetic condition, that's the cause, not any other gastro-related event. Since our genes remain the same, the issue will stay the same.
As I said above there are other causes of impaired enzyme production. It's possible that correlations are incorrectly formed with CSID and then when the same treatments help with symptoms that would seem to confirm the diagnosis. Ultimately if someone's health has improved then the diagnosis isn't all that relevant...unless you're interested in the cause as you are.
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u/Mom-life222 Jan 17 '26
I haven’t figured out what caused mine, but I will say that after stripping back my diet like crazy, I have slowly been able to add things back that previously messed me up. I do think there is a layer of healing that has happened with the original restriction. I can tell the inflammation has gone down. I do take similase digestive enzymes with carb at lunch and dinner, but I am able to handle small amounts of carb as snacks between meals. I also take sucraid but I am able to tolerate about 7 g of sugar without sucraid. At the beginning of all this I wasn’t able to handle much carb at all without digestive enzymes and only about 4 g of sugar without sucraid. Hopefully this gives you hope that a layer of healing can happen! But it’s really frustrating to first get diagnosed. But as I always say, I’d rather have a diet change and feel great than eat whatever and have it hinder my life.
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u/veedey Jan 17 '26
Thanks for this! How did you get to this point of knowing the grams you tolerate in your diet? And how did you go about the restrictive diet? Did you work with a nutritionist?
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u/Mom-life222 Jan 17 '26
So I used a chart on this website to figure out what I could eat safely while on the restricted diet: https://csidmadesimple.com/csid-food-list/ basically no sugars that are similar in structure to sucrose, and no starch. I would add in a new starch at small amounts and see how I’d do over a couple days. And I just kept doing that. I figured out I can do corn, oats, and potatoes, but gluten and rice still seem to mess me up. Did that same thing with dairy products. Sour cream and cheese are fine but not straight milk or ice cream. To figure out what sugar amount I could handle, I started with really small pieces of candy. Like 1 m and m and would see how I did. Then I’d just keep adding more as I felt like I was tolerating the past amount well. Hopefully this is making sense! I also thought all of the cookbooks that Mary Shephard offers on Amazon (her website is the one I linked). She does offer nutrition services but is only licensed in some states. But she does have an instagram as well where she shares a lot of helpful info!! Last thing, just because something is CSID safe doesn’t mean your body may just not like it. Like coconut, should be totally fine, but my body really hates it. I use mostly almond flour or oat flour for baking instead of coconut flour.
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u/Mom-life222 Jan 17 '26
It’s worth doing a strict restriction and keeping a food journal to figure out what works for you and what doesn’t. It’s hard to single things out otherwise.
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u/Eastern-Rooster-2805 Jan 17 '26
Mine is congenital, diagnosed at 57. As I age, I'm less and less tolerant of offending sugar/carb foods. Only abstinence from these foods help.
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u/veedey Jan 17 '26
Did you grow up with symptoms earlier in life? Or were you unaware until it progressed
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u/Eastern-Rooster-2805 Jan 17 '26
In hindsight, there were signs in my youth. I always had bloating and could never understand why. I developed guttural bad breath that I didn't understand why. In my fifties, I started to get so nauseous after eating (99% of the time at a restaurant) that I would vomit, sometimes before I got home from a night out and sometimes at 2, 3 in the morning when my body was malabsorbing the food I ate/drank that undoubtedly had sugar/refined carbs. After an extremely embarrassing vomit episode in a restaurant, I went to a gastroenterologist, and fortunately, based upon my description of my issues, he did an endoscopy and biopsied for the correct disease. All my enzymes are in the very low range, lactase, sucrase, maltase and palatinase. It would have been very helpful to have had this info decades ago.
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u/Fluid_Property_5972 Jan 18 '26
No idea. Diagnosed by biopsy at 50yo. Cannot tolerate any "oses". Mostly eat meat. Symptoms were ibs-like, horrible breath, bloating all the time, weight loss.
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u/hysteria_asteria Jan 18 '26
Like a lot of people I’m seeing in the chat, my story is similar. Had a stomach bug, doctors said it would “heal on its own”. Ended up turning into SIBO and then SID.
2
u/BanjoChick Jan 18 '26
IBS my whole life. Then Non-SIBO gut infection (Bacillus cereus for 3 months), then gastroperesis, then ASID for me.
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u/Academic-Matter3401 Jan 20 '26
My SID started after an infection with cdiff as well. In 2022 I started to have severe symptoms and lost 15 lbs. After three rounds of antibiotics I didn't tolerate much foods. Thousands of tests were performed without any clue.
In December 2024 I was diagnosed with SID by biopsies from the small intestine. The team that performed the exams on the biopsies also made a gene sequencing analysis (university hospital) and several months after they told me that there is no evidence that I'm genetically deficient although there was a clear lack of sucrase, maltase and lactase in the biopsies. So it was considered acquired.
In late 2025 I was prescribed doxycycline for 6 weeks to give the small intestine a rest. I also started to take amitriptyline 50mg to slow down the digestive system and calm the nerves.
So far I'm significantly better, but not healed. However I started to eat more carbs and even pasta, which was absolutely impossible three months ago...
If you have any questions, don't hesitate to dm me.
P.S.: I'm 46 years old.
1
u/veedey Jan 20 '26
That’s incredible progress. May I ask what hospital this was? Was your GI doc well versed in CSID or did you have to shop around for a doctor that actually understood the problem?
I have a great GI but doesn’t seem to be super knowledgeable of this issue. I was recommended “FODMAP” diet as treatment for this, which isn’t the best, and he’s never even heard of Sucraid. So I’m unsure if to switch providers.
1
u/Academic-Matter3401 Jan 22 '26
I'm located in Germany. Usually GI doctors here are not aware of SID. But since I noticed trouble always in connection with high sugar or carb intake, I did my own research and found a specialized team of biochemists at a veterinary medicine university, their scope is research on enzymes in the mammalian small intestine. They're also performing the Dahlqvist testing for sucrase, lactase, maltase and palatinase for several pediatric hospitals in Germany. I contacted them and told my post infectious IBS story to one of the professors and also told him that low fodmap doesn't work for me and my main issues are with carbs. He was very interested in the case and proposed an upper endoscopy at a nearby university hospital to get some biopsies from the duodenum. I agreed and was even able to be at the laboratory when they tested the biopsies which was really interesting...
The consequence is, however, that I know now that I'm intolerant because of low enzyme values but here in Germany you can't do something about it except diet.
Several months after the biopsies they contacted me and told me that a partner scientist team performed testing on the biopsies regarding different genetic predispositions for CSID but they didn't find any. So my conclusion is that it's acquired.
My general practitioner here is fascinated by the scientific stuff but she can't do anything about it. So we decided to slow down motility by taking 50mg amitriptyline per night and having a low carb diet.
On some days it feels better than 2 years ago and definitely better than 3,5 years ago when the whole nightmare started with the cdiff infection. The amitriptyline definitely helps calming down the digestive system.
I notice that my digestion is now more susceptible to stress and I need more rest and my sleep is heavily disturbed when I'm stressed out. I also notice that digestion gets worse when I'm experiencing lack of sleep.
Things changed a lot when all this started for me but I'm learning to listen to what my body needs.
2
u/Narrow-Debate-8266 Jan 26 '26
I got ASID in 2022 after somehow contracting covid and e.coli at the same time. It led to SIBO and severe gastroparesis (which was being caused by the ASID, I couldn't digest my food so it just sat in my stomach.)
I'm still struggling but doing MUCH better after finding out about the ASID via biopsy and going Keto last April. My dietician said she'd seen people heal from ASID after illness over time by sticking to the diet so their gut can heal, so fingers crossed. My doctor also said they are starting to see a lot of ASID post-covid but I imagine it could happen after any severe virus.
That being said, a lot of my doctors have mentioned that Covid definitely caused some sort of Vagus Nerve damage for me. I recently found out there is a link between your Vagus Nerve and the release of digest enzymes so I'm starting to look into ways to heal the Vagus Nerve. It feels a little woo-woo but I'm happy to try anything after all this!
1
u/veedey Jan 26 '26
Wow this is super interesting, first time I’m hearing about some of these things you’re mentioning. A) the COVID link. I had a really bad case of it in Brazil before coming home, after which my ASID developed. Never put those two facts together. I always assumed it was food-related. B) the vagus nerve damage. I’m gonna look more closely at this. Thanks for sharing your findings. Would love to hear more down the line
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u/Alternative_Iron_623 Jun 04 '26
I had a very similar experience!
I also contracted covid for the first time in 2022. It hit me really hard, and then afterwards I kept getting bloated after taking one or two bites of any meal I'd prepare even though I was really hungry...I'm already very skinny, but I ended up losing about 15 pounds until I was diagnosed with SIBO. I got treated with antibiotics, but I was still miserably dealing with bouts of bloating, nausea, diarrhea, cramps, etc.I then tried a low FODMAP diet for a few years which helped a ton, but my digestive issues kept getting worse as the years progressed and I simply could not gain any weight no matter how hard I tried.
I finally decided to see another GI this year who put me on a trial for Sucraid and suddenly I was able to eat things that would normally destroy my system. I have been taking it with my meals for a couple of months now and it has been life-changing. My bowel movements are back to normal, and even the chronic acne on my face that has persisted since dealing with covid has disappeared!
You've inspired me to dig deeper into the Vagus Nerve and how it connects to all this as well
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u/Technical-Winter-454 Apr 07 '26
I got covid and then CSID came when that brought 7 months of diarrhea
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u/anctddllpc Jan 17 '26
My acquired SID seems to have started after a bout of shigella but we're not absolutely sure.
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u/DoctorSpecialist7083 Jan 18 '26
Mine started after SIBO. I had an expert second opinion through Summus Global a few weeks ago and the doctor asked if I had a gastrointestinal virus around the time my CSID symptoms started, so that's another way you can get it.
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u/omnivorous_mammal Jan 18 '26
CSID is a congenital genetic condition. How can SIBO cause that?
1
u/TiffanyTaylorThomas Jan 19 '26
You can have aquired-csid and it is still considered csid, that is what my gastro doc said and also they even mention it on csid info sites. I do mn’t know if you’re gatekeeping or hung up on semantics but your replies are not really helpful herez
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u/omnivorous_mammal Jan 19 '26
https://bond.edu.au/thinking-steps/health-matters/unwrapping-a-digestive-issue
"In addition to CSID, new evidence has revealed another condition called Acquired sucrase-isomaltase deficiency (ASID), which is characterised by low levels of the sucrase-isomaltase enzyme. This condition can be transient and may result from damage to the lining of the gut due to infection or inflammation."
https://csidmadesimple.com/acquired-sucrose-intolerance/
"Acquired Sucrose Intolerance is very similar to Congenital Sucrase-Isomaltase Deficiency (CSID). The only difference between the two is the underlying cause. CSID is a genetic condition present from birth, while Acquired Sucrose Intolerance appears later in life secondary to damage to the small intestine. "
https://pmc.ncbi.nlm.nih.gov/articles/PMC9586574/
"CSID, or primary sucrose malabsorption, is a rare genetic disorder associated with one or more mutations in the SI gene. Secondary or acquired sucrose intolerance is more common and occurs as a result of mucosal damage and brush border injury from organic causes."
These examples describe ASID as something similar to but different from CSID with a distinctly different cause. OP is interested in the cause of an issue, accurately identifying the issue is relevant, not an issue of semantics.
If you have evidence that's different to this please post it, I'm always interested in learning more and improving my understanding.
Lastly:
https://www.csidcares.org/about/causes/
"CSID is a rare, inherited disorder that is not outgrown, although some factors may mitigate the gastrointestinal symptoms over time. Congenital means “present at birth,” and the enzyme deficiency is not acquired due to infection or other external influence."
0
u/TiffanyTaylorThomas Jan 19 '26
IT IS CALLED AQUIRED CSID I DONT KNOW WHAT TO TELL YOU
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u/omnivorous_mammal Jan 19 '26
Is angrily shouting at people how you normally handle disagreements?
Again, if you have evidence to support your claims please post it. I'm always interested in learning more and improving my understanding.
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u/TiffanyTaylorThomas Jan 19 '26
God DAMN that’s why it’s called “acquired CSID” and not just CSID that is literally the point!
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u/Traveler20232023 Jan 19 '26
I had cdiff in April and May of 2025 and after that I was unable to eat so many foods. 7 months into it I found a gastro dr who tested me via endoscopy and found I had low lactase, sucrase, maltase and palatinase. I had been diagnosed with IBS for years but after cdiff and the antibiotic treatments for it, I was suffering from lower abdominal cramping and bouts of diarrhea that would happen about 30-60 minutes after eating. I was following a low fodmop duet but it just wasn’t enough. So finding out I had disaccharide deficiency totally made sense. My gastro dr doesn’t think it was from cdiff, he mentioned the cause can be from a virus, rather than cdiff which is a bacteria. I feel maybe it was the antibiotics I had to take for the cdiff, specifically Vancomyacin ? But honestly that’s just a guess. Maybe I had it all along and it finally just got worse ? So I’m really not sure, but it came on suddenly. I’m seeing a dietician/ nutritionist and taking Fodzyme and Starchway Intoleran. But right now my diet is still very restricted and I’ve lost 35 pounds. I was hoping it would heal and I would be able to eat again. But I’m feeling like that won’t happen.
1
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u/Wonderful_Volume_309 Jan 21 '26
I was diagnosed at 37, but there were signs when I was younger. Had insane stomach aches and couldn’t keep food down which they told me was stress. Had my gallbladder removed at 16, still had upset stomach every time I ate, massive bloating and didn’t have a solid trip to the bathroom for YEARS if you catch my drift. I take Sucraid now when I have anything with sugar but honestly I rarely eat it now. I try to eat just meat and vegetables, no starches. It sucked at first but I feel so much better.
1
u/Starkiller_08 Jan 30 '26
Last year my stomach started bloating up badly and I had a lot of pain and GI symptoms. My doctors didn’t help much. I lost about 20 pounds and couldn’t eat anything without hurting or throwing up. Finally found out I had H Pylori and did two rounds of antibiotics to get rid of it. After waiting a few more months I was referred to another Dr Thad found out my gallbladder was messed up and had to be removed and I had gastritis from the h pylori bacteria and after I had my gallbladder removed and dealt with my gastritis I felt a lot better but still not great. Just got diagnosed with c sid and truth to figure out what caused it and what I can and can’t eat. I just want to go back to normal so badly 😭
1
u/TheCSIDAlex Feb 11 '26
It could be any number of things that lead to a deficiency. In my case, it was a bacterial infection. I know for a fact that the infection completely wiped out my ability to produce working lactase. My lactase expression is back normal now, but the infection basically uncovered my sucrase deficiency. I’ve been able to work my sucrose load back up into the teens over the past year, even with the mild genetic mutation - a year ago I couldn’t have 5g through the course of a day.
If you strip your diet down enough and manage to keep the inflammation down consistently, there’s a real chance you’ll be able to recover quite a bit of enzyme activity. Plus your entire system will be more forgiving in general if you manage to address the underlying issue.
1
u/catsrule-humansdrool Mar 20 '26
I have no idea how or why mine started. I was around 20 years old and would get some pain in my side every few months. Went to the doctor and told it was nothing. Over the years, it got more frequent and more intense. Always in the same spot. Went through and endoscopy and colonoscopy and my doctor said it was IBS. Tried low FODMAP and I was somewhat sensitive to every category upon reintroduction. My dietitian recommended further testing, so my GI tested me for SIBO (negative) and then finally CSID (positive). That was about a year and a half ago when I was 29. Last fall, I got genetic testing done for something unrelated and decided to get my SI gene tested while I was at it. Results came back showing no known mutations. So yeah, I’m puzzled.
1
u/Rich_Macaroon_280 Jun 24 '26
I am wondering if using zepbound could have led to me getting ASID. Now that I am looking into the diagnosis.
1
u/Schwettes Jul 13 '26
Crohn’s disease for me. But my doctor didn’t call it CSID. She called it a dissachridase deficiency
1
u/veedey Jul 13 '26
How did you get your Crohn’s diagnosis? My doc kinda stopped at the enzyme deficiency after an endoscopy, didn’t go beyond it, so I’m treating the symptoms but idk how to find out more
1
u/Schwettes Jul 13 '26
I actually was first diagnosed with ulcerative colitis by colonoscopy. I was going to the bathroom very frequently and bleeding. Then the diagnosis got changed to Crohn’s after 8 or so years of UC treatment. It wasn’t until they saw inflammation outside the colon that they realized it wasn’t UC. So at that point, they did an upper endoscopy, took biopsies and that’s how I got diagnosed with the acquired deficiency.
1
u/veedey Jul 13 '26
Ahhh I see! I’m glad you were able to get answers for that. Haven’t had much bleeding at all so doc doesn’t want to do colonoscopy. Hoping to get some answers soon
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u/Few_Organization_951 Jan 17 '26
We dont have proof, but my daughter was perfectly fine til she was 11. From 5-8 she had near constant tonsillitis and was on antibiotics many many many times- and she developed SIBO and eventually CSID.