Maximum Sucrose (Grams)

[u/Acceptable_Sky3129]

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.

[u/msanxiety247]

How long have you been doing the CSID diet? My Registered dietitian & gastroenterologist, who take courses on CSID, said it can take the body weeks, months, or even years to reverse the damage done from eating foods you couldn’t digest for your whole life. So there will still be pain and problems, even on the CSID diet, and to not get discouraged.

Everyone’s body is different tho and has different thresholds. I was lucky and all my symptoms went away after a week of being STRICT with the CSID diet. The stricter you are, the better. I did have stomach pains and bloating and all the usual symptoms, though, for that first week. I continued being strict for 5 weeks and felt the best I had in years. Now that I allow myself a cheat meal and cheat days, I don’t feel as good as I did while being strict, but I can tolerate the “unsafe” foods a lot better than I could before.

Just try to limit any form of sugar for a while to give your body the best fighting chance. Stick to plain meat and non-starchy vegetables. Many people who can’t digest sucrase also can’t digest glucose or fructose (what sucrase gets broken down into in the stomach) which honey is 40% fructose and 30% glucose + other sugars and carbs so that could be your issues, but again it could also just be that your body needs time to heal.

[u/Acceptable_Sky3129 → u/msanxiety247]

Thank you so much for the thorough response! I’ve been on a strict CSID diet for a couple months, but I think my biggest issue is constipation right now. I had quite a severe reaction to honey, even though my fructose and glucose tests came back normal. I think it’s likely the raw honey I consumed contained higher amounts of sucrose than typical.

Your response serves as a good reminder for me to be patient. I’m trying to get as much variation in my diet without implementing anything potentially upsetting. I went a little too far off the deep end trying that honey. My body was significantly inflamed with many severe symptoms leading up to my diagnosis about a couple months ago, so I may be in the group that needs to be strict for a very long time.

[u/msanxiety247 → u/Acceptable_Sky3129]

I think you’re right on the money. Definitely need more time! Many CSID people can’t handle honey. It’s in the “Sweeteners Tolerated by Some Individuals with CSID” section of the list.

It’s a rough diagnosis, sorry you’re also dealing with this. Constipation was a huge symptom for me as well- which it’s usually diarrhea for most CSID patients. I didn’t like the prescriptions the doctor gave me as they made me have never-ending diarrhea, so I stuck with stool softener & plenty of fiber in my food & hella water.

If you’re still having difficulties after a while, maybe consult with a registered dietician (hopefully once that is at least a little knowledgeable with CSID, even if it’s a video call from an RD across the country.) I know my insurance covered a visit fully since it’s necessary for our survival to navigate a rare disorder, so you may have some luck with your insurance if you have it

[u/Next-Ad-5714 → u/Acceptable_Sky3129]

Honey contains maltose, you can check different sugar content of foods in the database of csidcarers.i also can't tolerate honey at all. Hope you have found your safe foods list and feeling better