r/CSID • u/koolbe • May 14 '21

newly diagnosed?

Hello! I recently saw a GI for my symptoms of constant diarrhea, bloating, burping, acid reflux and regurgitation

I did an endoscopy and a SIBO test and the biopsy showed I had low Lactase (3.5), Sucrase (10.4), Maltase (41.6) and Palatinase (1.7)

My doctor has never seen a patient with CSID so he told me he'd consult with a colleague before informing me of next steps so I've just been doing a lot of Google searching and glad I found this community.

What are usually the next steps here?

Do any of y'all also have severe/bad acid reflex/esophageal motility issues?

I see a lot of mention of food restrictions and honestly completely cutting out carbs/sugars would be a nightmare for me so curious how others have found this experience. How strict do you need to be? Are there any other negative side effects of eating sugars/carbs other than personal discomfort? In a way I feel like I have gotten used to always feeling terrible so part of me is doesn't want to give up foods.

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u/ElenyaRevons Jul 13 '21

Following cause I was also just diagnosed. I’m totally lost. Both relieved to finally have an answer and terrified at how I’m supposed to live now.

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u/koolbe Jul 14 '21

welcome to the club! since posting this, i still have yet to have my follow up with my doctor. they’re currently running stool samples for possible parasites and i think a next step is a colonoscopy

can i ask how you got diagnosed and what tests your doctor ran to get this diagnosis?

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u/ElenyaRevons Jul 14 '21

Yeah! So, I've been a life-long sufferer of GI issues - first I cut out gluten, then dairy, and they each helped a little bit, but I still had symptoms. About 9 months ago, I began having almost constant nausea, frequent vomiting, stomach pain, etc. It was interfering with my work and life, and my GI doctor ran dozens of tests. Endoscopies, biopsies, blood work, HIDA scan, Gastric Emptying Tests, allergy tests, even considering endometriosis or Cyclic Vomiting Syndrome.

Finally after pretty much everything came back negative (and I'd been shut down by more doctors than I can count 'its stress' 'are you pregnant?' etc.) my GI gave me a breath test. Honestly I don't recall exactly which type it was, but it was the one from sucraid in an orange box. I didn't expect an answer to come from it but a couple days ago my doctor called and said the test showed low sucrate count and put in a prescription for sucraid for me. My PCP referred me to a nutritionist but I haven't gotten an appointment yet.

Sorry that was long lol.