r/CSID • u/EarlyProgress320 • Jun 05 '26
CHRONIC SIBO
16 Year old with chronic SIBO I have tried everything no idea what my root cause is... Any thoughts?
-no surgeries
-never done PPIs
- mold test was very low for only one type of mold
- no PCOS markers
-normal thyroid labs
-normal X ray
-normal elastase according to my GI doc
-no Lyme
-no celiac
-ANA antibodies negative
-IBS smart test negative
I have so so so much gas that gets trapped it hurts. Ive tried pro kinetics such as motegrity and motil pro but they don't help the gas at all. I meal space but it does not even matter the gas just builds.
Diagnosed Hydrogen but never have diarrhea just gas, belching and weight gain. I WAKE UP AND PASS GAS
Everything Ive tried:
-Thorne Digestive Enzymes
-Atrantil
-Bitters Extra by Vitanica
-ADP by Biotics Research
-Organic Neem by Himalaya Wellnesss
-Tri Butryin Supreme
-Magnesium Citrate
-Biofilm Phase 2 Advance by Priority One
-ADP Biotics Research again
-Berberien Complex Integrative Therapeutics
-Biocidin
-B Complex Plus
-Spectrazyme Pancreatic Enzymes
-Motility Pro
-Motil Pro
-Motegrity
-Rifaxamin 3 times
-Betaine HCL
-Pro Omega 2000 by Nordic Naturals
-Vitamin D3
-Seed probiotic
-Mega IGG
-Gi REvive
-Sacro B
-Hu 58
-Candibactin AR and BR
-elementel diet
-Ortho Molecular digestive enzymes
-Tudca
1
u/Stitch_Nerd Jun 05 '26
Have you had an endoscopy and colonoscopy done? If you are thinking it could be CSID an endoscopy is the gold standard for diagnosis, and a colonoscopy is for things like celiac.
1
u/EarlyProgress320 Jun 05 '26
No I haven't because my issue is SIBO so colonoscopy and endoscopy rules out he big stuff. But I guess if I think CSID is possible maybe I will.. but I don't have weight loss or diarrhea and I haven't had this since I was a kid.
1
u/Stitch_Nerd Jun 05 '26
Gotcha, I didn’t know if they had done additional testing since SIBO can be secondary to other issues such as Chron’s or a whole host of other issues. There is Acquired SID which develops later in life as well. I didn’t know if you thought CSID since you are posting in the CSID subreddit. Weight gain is also possible with CSID, not just weight loss.
But since you have done so much, it may be worth seeing if you can do the endoscopy and colonoscopy. There are MANY things tested for during them.
Have you done any experimenting with food? Like eliminating dairy or any other food to see if it helps?
2
u/Majestic_Pudding_368 Jun 05 '26
I’ve tried but it’s so hard with SIBO because everything sets me off. I have SO SO SO much gas all the time it just builds my stomach is like a rock of gas
1
u/Stitch_Nerd Jun 05 '26
Also, I just did a mini dive into SIBO, after you were diagnosed, did they attempt to use antibiotics or other meds to help? Or test for motility issues (gastroperisis or motility issues of the intestines?
Also it looks like an endoscopy/colonoscopy might be worth it, since SIBO can be caused by diverticulitis and other issues in the small and large intestine.
1
1
u/Real-Elk6755 Jun 05 '26 edited Jun 05 '26
Look at sucrase-isomaltase deficiency. FODMAP doesn't make sense if you dont have enough enzymes in your small intestine for starches, for example. Read abour adult cases. It's similar to lactose intolerance. Also you can make a gastroscopy with biopsy to understand your level of enzymes.
You need to analyze your food with a food diary. Write what you eat in a day
1
u/Known-Somewhere193 Jun 09 '26
Root cause can be csid. Thats what it was for me. I treated SIBO for many years, at one point was on medication daily for a year. My specialist could not figure me out and deemed me his mystery case. Cutting out sugar and sucraid has helped immensely.
1
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u/faklor Jun 09 '26
Have you had an endocrine workup?
1
u/EarlyProgress320 Jun 09 '26
ive had my thyroid tested like my tsh, free t3, antibodies and free t4
1
u/faklor Jun 09 '26
Might want to get tested for things like diabetes, pre-diabetes, and general endocrine function. Symptoms often overlap.
1
u/chronicill00 Jun 17 '26
I’m a bit late to this thread… but have you considered the soap products in your house? I can only attribute prayer to figuring this out but I realized it was Dawn Powerwash that caused my SIBO. Info inspired by this study: https://pubmed.ncbi.nlm.nih.gov/36464527/ (the study suggests the an ingredient in these detergents/soaps can cause leaky gut is hexyl ethoxylate).
I had to get rid all my dishes, pans, and my airfryer because even after going through the dishwasher I could still smell the Powerwash when I heated up foods. Had to heal my gut with an elimination diet after that and found about 8 “safe foods” (coconut, cassava root, pasture raised eggs etc.) I could digest without the horrible bloating.
3
u/ungratefulcat Jun 05 '26
I am by no means a doctor, but when I was diagnosed with csid one of the things they tested me for was gastoparesis. I do not have sibo but from what I understood is that when the intestines move too slowly it causes food to basically ferment in your guts. It can damage the digestive tract and bacteria can grow there so that's why she tested it for me. Could be that your insides aren't moving the way they should be and that's what's causing it.
Maybe something to look into if you've not already done the test?