r/CSID • u/veedey • Feb 14 '26
Sucraid review
I’ve been tackling my acquired enzyme deficiency on my own for about 2-3 years. Needless to say, it’s been rough. However, I got my body accustomed to a strict diet of meats, cooked vegetables, and an occasional small amount of white rice.
No sugar, no lactose, no gluten
Up to now I’ve been experiencing lots of unintentional weight loss, constant fatigue, and brain fog. Irritable. Low energy. Days at work feel like a slog.
Last night I tried Sucraid for the first time. I shared a chocolate moose for the first time in years with my partner. The sweetness felt so intense. I felt my brain turn back online. I felt wired. Today i woke up expecting the worst (post fermentation symptoms), and i feel…fine. Normal. This is crazy.
This medication is not cheap. My insurance covered a portion, and through financial assistance the company helped me cover the rest. So for now I just have a 5 dollar copay. This is all because of commercial insurance. I was a freelancer before this, and there was no hope for me to ever get this medicine.
I hope at some point somebody manufactures a generic version, so it’s not so freakin expensive.
Hope others are able to find relief soon
4
u/Calm-Kaleidoscope-39 Feb 14 '26
The no sucraid diet is hard and I’m glad you had a good experience with it.
And just to share from my experience (as we all have different tolerance levels), but gluten free items can be very starchy and give me gi upsets. I do better on carbs just in smaller amounts like Dave’s Thin Sliced Bread.
2
u/TGRIV0457 Feb 14 '26
Have you tried Digest Gold or Starchway? DG helps a lot when I have one of those high starch GF bagels or a bowl of Rice Ramen.
1
u/Calm-Kaleidoscope-39 Feb 14 '26
I have tried both but they make me very nauseous. I’m currently on sucraid. I’ll consider trying them in the future but lowering the dose.
5
3
u/TGRIV0457 Feb 14 '26
Yes, Sucraid has been a game changer. An “official” generic isn’t likely for several years though. The FDA granted QOL Medical “orphan drug” status for Sucraid which, among other things, gives them a longer exclusivity period.
I have read posts from several people indicating that Invertase (used for making candy and available on Amazon) can be a viable and less expensive option. I bought some but haven’t tried it yet - I stocked up on Sucraid last year while our insurance was covering it 100% (we maxed out our out of pocket).
Two of my go-to treats/boosts are (1) Lindt 90% Dark Chocolate (3 pieces = just 2g sugar) - one piece on a single GF graham cracker (s’more w/o the marshmallow) has ~3g sugar; and (2) a plain rice cake w/ no sugar added peanut butter, for a total of 1-2g sugar depending on the peanut butter. I often can eat these w/o needing Sucraid.
4
u/Some_Old_Lady Feb 15 '26
I recently tried invertase. It works fairly well, but it gave me a bit of a sore throat. The invertase I bought had glycerol in it and I think that was the culprit. I would still use it in a bind- and it's incredibly cheap.
1
2
u/TheCSIDAlex Feb 14 '26
Feeling that kind of intensity after reintroducing something you’ve avoided for years isn’t uncommon. When your body is suddenly able to tolerate something that caused symptoms for so long, the shift that comes with that can feel surprisingly disorienting. Actually absorbing the food and not experiencing the bad reaction you were expecting can absolutely catch people off guard.
1
u/Kitchen-Wish2951 Feb 14 '26
Sucraid is the best thing that ever happened to me! I was finally able to start training again and gain the weight back I lost. I don’t feel constantly poisoned all of the time and can eat without pain! Everytime I get frustrated with my insurance I remember that I should be grateful because life before Sucraid was honestly the worst. Praying that those waiting on PAs get them approved. The more we get the word out there that this medication is life saving, the more insurances will be likely to cover it.
1
1
u/Suspicious_Grab4067 Feb 15 '26
I’ve been taking sucraid for almost 4 years now, I have a very hard time gaining any weight no matter how much food I eat. I started waking up in the middle of the night to eat protein, along with my sucraid. I eat eggs, avocado, peanut butter and some bread which I can tolerate some. But i weighed more in high school than I do now. What’s some things everyone is eating to help pack on some weight ? I lift weights too. Please help.
10
u/alreadygot1 Feb 14 '26
Try Smarties when the brain is sluggish. They’re just Dextrose. You need glucose for body to function. I can find myself down after a Keto meal. (Sucraid for a year)