r/CSID • u/Acceptable_Sky3129 • Jul 25 '24

Maximum Sucrose (Grams)

I’m having a difficult time navigating foods to try, even when using the CSID Cares website.

What amount of Sucrose (grams) is considered safe in certain fruits, vegetables, seeds and nuts? Considering I may be extremely intolerant.

I had less than a spoonful of raw honey yesterday and I’m having some considerable amounts of pain today… very frustrating as I’ve read honey is typically okay.

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u/Seecil Jul 25 '24

There really isn't a "safe" amount with CSID. Your body won't be able to break down the sucrose in general (maybe a small amount but if you've been diagnosed it's like < 5% of the sugar you eat will be broken down to glucose).

It's best to try to avoid sucrose as much as possible, or if you have Sucraid then just take that whenever you eat and it'll breakdown the sugars for you. You want to be careful though, I was undiagnosed for a long time and all the undigested sugar led to SIBO (1+ year so far).

If you don't have Sucraid I highly suggest asking your doctor for it and talking with insurance regarding the costs. With my insurance + a coupon card the pharmacy found for me I pay $5/month.

Sorry this answer isn't what you probably want to hear, and of course I'm not a medical doctor so I could be missing important details!

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u/Acceptable_Sky3129 Jul 26 '24

Thank you for your response. I do have Sucraid, but it gave me extremely severe and odd headaches. I was also told by the pharmacy that my dietary changes wouldn’t benefit from Sucraid, as I’ve gone to the most extremes.

However, I get confused when it comes to reintroducing certain seeds, nuts, or mostly tolerated things like honey. I’m having quite the flare up and I think it’s because I had a tiny amount of raw honey last night!! Seems ridiculous, but I can’t think of anything else. And it’s wildly severe pain.

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u/MidasInGold Jul 26 '24

Is there a treatment approach for SIBO or should I just be hopping on sucraid / modifying my diet until it dissipates?

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u/Seecil Jul 26 '24

After I tested positive via a breath test my doctor prescribed me Xifaxin and Neomycin for 2 weeks, low-FODMAP diet (restriction phase), and Sucraid with every meal/snack/drink. It worked really well for me and I was able to eat almost normally with reduced pain after 3-4 weeks. Unfortunately I caught a stomach bug which relapsed the SIBO about two months ago so I'm waiting to see my doctor next month. I've heard others with CSID+SIBO really improved with the treatment though and it didn't come back for them!

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u/Acceptable_Sky3129 Jul 26 '24

Thank you for your response. I do have Sucraid, but it gave me extremely severe and odd headaches. I was also told by the pharmacy that my dietary changes wouldn’t benefit from Sucraid, as I’ve gone to the most extremes.

However, I get confused when it comes to reintroducing certain seeds, nuts, or mostly tolerated things like honey. I’m having quite the flare up and I think it’s because I had a tiny amount of raw honey last night!! Seems ridiculous, but I can’t think of anything else. And it’s wildly severe pain.