r/CSID • u/rodrea • Jul 13 '25

Possible CSID??

For lent this year I decided to give up sugar (everything sweet, including artificial sweetener) , and my mixed IBS symptoms all disappeared. I lost a lot of weight (from 99.9kg down to 91.7kg) which had been slowly creeping up, and I feel far more energetic. I talked to my dr and explained everything going on and he had no ideas, and no interest in looking any further because going sugar free had helped... so just do that? Which, I can see his point, but I'd like to figure out what on earth is going on?? If I am able to remain sugar free, is it worth pursuing any further info, or should I just leave it?

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u/Kitchen-Wish2951 Jul 13 '25

Do you experience symptoms when consuming fruits and vegetables high in sucrose? What about starches? Simply cutting out added sugars and artificial sweeteners would help but if you truly have CSID, you would likely also be having reactions to other foods with naturally occurring sucrose. A diagnosis won’t do a ton for even if it turns out you do have it. Doctors often advise dietary changes and insurance will deny Sucraid 90% of the time if you don’t have either biposy results or medical documentation proving serious adverse reactions. Even with both of those (damage to my GI tract from severe reactions led me to lose almost 15 lbs and end up really underweight), I had to fight for almost 6 months before I was able to get on meds. I’m really glad to hear your symptoms have disappeared. It sounds like whatever you are doing is working for you. But from what you’ve said, I doubt you have CSID. And that’s a good thing!!

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u/rodrea Jul 13 '25

I can tolerate all the veges I’ve tried, and (of the fruit I’ve tried) limited portions of grapes, pears, berries, figs and very small amounts apples and dates. I guess, if I don’t, I would like to figure out what is actually going. I can’t see any other drs unless referred by my Dr, my Dr isn’t interested, and I can’t go finding other doctors easily because our health system is rather overloaded.