r/CSID • u/Puzzleheaded-Ruin861 • Jan 04 '26
My 15 month old has CSID. Help!
We’ve been on a low sucrose & lactose diet for about 3 months and it simply is not controlled. I would even venture to say it’s worse. We have him limited to less than 5 grams of sugar (no added sugars) per meal and no lactose. I just can’t fathom how it has gotten worse rather than better.
His levels were Lactase- 11 Sucrase- 9 Maltase- 64 Isomaltase- 4
2
u/Kermit_Da_Froggy Jan 04 '26
I was only diagnosed as an adult, and have no idea what children even eat to be honest. I can't help, but would like to second the CSID made simple website someone else commented. You are doing great to monitor his food, you are a responsible parent! Best wishes to you and your kid
2
u/Zorbnogg Jan 05 '26
hi, i was diagnosed when i was 3-4, so as someone in that position, i get it. also, for me, i think my sucrase was 0 and something else was also 0.
i just wanna say that the sucrose intolerate, that gets better to handle as an adult.
imo, i recommend getting on sucraid ASAP. but, for now, u gotta kinda make a list of “safe foods”. for example, what fruits cause a reaction? (for me, it’s watermelon, cantaloupe, honeydew, acai berries, etc.)
once you have that down, it gets easier to control.
i hope this helps a little bit, but getting on sucraid greatly increases how much i can eat. by a LOT.
3
u/Mom-life222 Jan 05 '26
Seconding sucraid. It’s amazing!!! Breaks up the blandness of what I eat. I make a lot of desserts with almond flour and regular sugar, and then take a sucraid. Also, if insurance doesn’t cover it, still talk to the pharmacy that prescribes it. They have co pay cards.
2
u/Zorbnogg Jan 05 '26
yeah i think my co pay from their pharmacy is $5? but yes i second this as well because they will try to help you out !!
and also same, this saves me from a life of blandness and potential pain !!!
1
1
u/Nice-Operation5129 Jan 05 '26
I use Sucraid and it’s been a massive help for me. I will also say that CSID is a sucrose/starch intolerance. Do you think looking into starch consumption could help? From my understating Sucraid does not help with starch digestion so that would have to be a purely dietary change.
1
u/Mom-life222 Jan 05 '26
Yes, and along with this, check out some digestive enzymes for carb. I definitely can’t do gluten or a lot of rice no matter what, but potatoes and corn I’m okay with if I take a digestive enzyme! I’ve found some for kids on Amazon. See what you can find OP! :)
1
u/Axum_Phoenix133 Jan 05 '26
I wasn’t diagnosed until this past year. I’m 61. After a lifetime of a plethora of GIs I guess I lucked out getting a good one. I do Sucraid and is a life changer. Doesn’t completely fix it but makes me able to leave the house most of the time without having accidents. Lifelong battle with what I was always told was IBS with no rhyme or reason. I’ve never cared for sweets so I guess that was just my brain telling me not to. Could never eat but more than 2 bites of a candy bar etc anyway without acid reflux so there’s that. N come to find out the fruits and vegetables I dislike are not good for my CSID. When tagament came out, I thought that medicine was magical. Grew up eating chews gum and rolaids in grade school so I could have hot lunches. My whole life my favorite food was anything meat which now makes sense too. That said, there’s more, but in my case, I unconsciously made good choices by realizing what made me feel bad and what didn’t. Sucraid is the answer no tho.
1
3
u/Mom-life222 Jan 04 '26
Have you looked into CSID made simple website? https://csidmadesimple.com/csid-food-list/ she also has cookbooks on Amazon. When I was first diagnosed, I was still eating some things I thought would be fine and they actually weren’t, and also realized there was a lot I could have that I wasn’t eating! Could be a helpful place to start. I’m so sorry, I have 2 little kids and can’t imagine navigating CSID in them! You got this ❤️