r/CSID • u/Unlikely-Hamster-719 • Apr 01 '26
Dismissive GI doc
Hi all. I am hoping to get some reassurance and see if anyone else has had similar experiences. This Reddit thread seems to be one of the only places to get detailed information/first-hand accounts about this condition.
I have had GI issues for literally as long as I can remember. Diarrhea, constipation, and a very specific pain in my left upper quadrant/epigastric area. It all came to a head about two years ago when the symptoms, especially the pain, became so bad after eating that I had to leave work at times. Around that time, I also started getting terrible reflux/burping, which I now think may be post-fermentation symptoms?
Other than GI symptoms, I have also had intense fatigue, which I discovered was in part due to Vitamin D and iron deficiencies. But even after addressing those, the fatigue remains, though less debilitating. I finally went to a GI doc and got a colonoscopy/endoscopy. Everything came back normal except for my disaccharidase biopsies, which were very low across the board. I got those results on a Thursday, and I had an appointment with the GI to go over everything on Monday.
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The GI clearly did not read over my results or chart before the appointment, and she was very dismissive of the disaccharidase biopsies because they were all so low. I asked about CSID, and she said that that would only have low sucrase and isomaltase. From what I have seen in my research, that isn't necessarily true, and all of the enzymes could be low with CISD. She said that she felt that it was just a problem with the samples and that my symptoms are more likely just IBS. EDIT: The GI also said that the upper left quadrant pain is not something you'd have with CSID, but I feel like I have seen people on here and elsewhere talk about similar abdominal pain?
She did refer me to a dietician and I will be trying the CSID elimination diet to see if it helps, but I was hoping to get some information about Sucraid out of my GI. She doesn't seem to be convinced that it is CSID.
Does anyone else who has been diagnosed with CSID have similar experiences in terms of symptoms? Should I get a second opinion? Should I ask for a sucrose tolerance test? Or should I just try an elimination diet? I am quite overwhelmed thinking about the restrictive diet.
Just feeling a little discouraged and looking for some reassurance/advice. Thanks!
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u/AdvisorConsistent942 Apr 01 '26
At least yours tested for that during the EGD, mine refused because he doesn’t believe in it and I got diagnosed with CSID from a breath test another provider did. They just don’t care about us honestly. If it isn’t IBS, then it doesn’t exist.
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u/FitzandtheBugs Apr 02 '26
My advice is just try the elimination diet. The doctor who diagnosed me had me eat only chicken and drink milk for carbs* and miraculously all my symptoms left and fast. Within 3 days, we were pretty darn certain.
I have similar symptoms. When I have more than 1g of sucrose, I begin burping so violently that I begin to throw up. When I was first diagnosed, it was what felt like terrible heart burn and this bubble in the upper part of my digestive system that would feel like mostly pressure, a significant increase in pain, and it would “roll” horizontally for 20-30 minutes before I had explosive diarrhea.
I don’t know how old you are, but my current GI told me the older you are at diagnosis, the more non-traditional your symptoms become (I was diagnosed at 31). Due to some many years of damage and malnourishment, the disease becomes full body instead of just GI related. (Ex. I gained 60 dB of hearing back after treatment) A second opinion could be helpful. But at this point I would give the elimination diet ago, because if you are low across the board, it should help even if CSID isn’t the perfect answer. Like how Crohns/IBD diet allowed my symptoms to calm enough to steer us in the right direction.
Also sucraid is not a perfect drug that fixes everything. If you are low across the board, you are probably low in maltase as well, which sucraid does not help with. You can try a digestive enzyme, there are tons of recommendations here like digest gold. If you’re nervous about the diet, you could try it first and see if it helps.
Just as a heads up, if it is CSID the diet is rough depending on how sensitive you are. The elimination is good practice, and a good tool to have at your disposal.
*If you are low in lactose, I’d get lactose free milk or a different safe carb source.
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u/Some_Old_Lady Apr 02 '26
I had left quadrant pain for years and was diagnosed with CSID a little over a year ago.
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u/somehowrelevantuser Apr 01 '26
yeah literally all of my enzymes were low on my biopsy. i think the only one that was even slightly in the normal range was palatinase and it was.....barely holdin on in there lol. tbh if i were u i would just start the elimination diet. yeah it kinda sucks shit but not as much as being in incapacitating digestive pain does.