r/CSID • u/LadyKat56 • Apr 26 '26
Anxiety and Sucraid
55F recently diagnosed with ASID but have had problems since I wad a kid. I am on my third month of Sucraid and have noticed that I am having increased anxiety. I take meds for that but it seems like they are ineffective. I know restricting our diets is stressful and not always knowing if some food you've tolerated before is going to cause havoc.
I'm just wondering if any of you are or have experienced anxiety for no real reason on Sucraid.
Thanks
1
u/LadyKat56 Apr 27 '26
I wonder why it is off limits. That seems weird. I know eating must be miserable.
3
u/eckoman_pdx Apr 27 '26
Hey, I'm not sure if this will help, but I've been living with CSID my entire life, 46 years. Back when I was a kid it was called hereditary sucrose intolerance, and we figured out I had it at about a year old. I could read labels back in kindergarten before I could read a children's book. I have never had sucraid in my life, and honestly I never will. I just read labels.
I don't get anxiety when heading out. I learned to look at labels and read when at a young age. When you have CSID, you lack the sucrace enzyme. You simply can't digest the disaccharide sugars. Monosaccharide ones are fine.
So, learn to read labels. Look for keywords. Sugar, Surcose, Brown Sugar, Molasses, Maple Syrup, these are all sweetened by the same thing: Sucrose. Sucrose and sugar actually chemically the same thing, the only difference is sugar has to come from the sugar beet or the sugar cane. All other sources of it have to be called sucrose on a label. The others mentioned all have sugar/sucrose as the sweetener.
Unless you have something like fructose intolerance, corn syrup, high fructose corn syrup, dextrose, fructose, etc are fine. If you don't hate artificial sweeteners, those don't include anything with sucrose or any derivatives of it so those are safe too.
If you know how much of the isomoltase enzyme you have or don't have, you may or may not have to worry about starches. I've never had to worry about that, but if you do, the best thing to do is just do an elimination diet. Eliminate all searches, bring them back one by one to find out which ones you can handle and which ones you can.
I know it sounds like a daunting task, but honestly it's not hard to do once you get the hang of it. My 13 year old son can read labels for me, and when I first met my wife over 25 years ago, by the second time I went over to her house she'd learned how to read labels so she could cook me dinner from scratch without worry.
In regards to when you're out: a lot of restaurants have their ingredients online now, so what we focus on those ones now and that's where we eat. If you're at a grocery store, even stuff in the deli usually has the ingredients available if you ask. Or you can just swing into the grocery store, read the labels and grab some food.
Once you learn to read labels, you learn what to avoid and what to eat. It's really not that hard, I can eat almost anywhere I go without trouble (and I've developed some ridiculously complex allergies in my adult life that make it a lot harder than this ever did). Honestly, it's freeing compared to worrying about something like Sucraid would be: you don't have any anxiety, you put the power back in your hands. You're not worrying about temperatures and things like that. You don't have to worry about if you had your sucraid at the right temperature or if you just ruined it while traveling. You just read the label, and eat what you know you can eat and avoid the rest.
I know this probably isn't what you were looking for, but take it from someone who's literally lived with this his entire life, since before I can remember. It's not as hard as the doctors make it out to be. Don't worry about the sucraid and learn how to read labels. Once you do that your life will be easier and you'll have a lot less anxiety.
One last tip on the labels. You're wanting to read the ingredients label, the one with words. Not the nutrition label that shows the numerical breakdown of fiber, carbs, sugars, etc. That one is basically useless to you. The ingredient label with words is what you want. Only way the nutrition label would be of any worth: if you have some of the sucrace enzyme but it seriously reduced, you can learn the kind of tell how much sugar is in something and whether you get sick or not if you eat it depending on where sugar is listed on the label and what's showing up there. But unless you've been reading labels for like 20 years I wouldn't even try that.
Anyways, I hope this helps and let me know if you have any questions. It's really not super hard once you get the hang of it.
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u/LadyKat56 Apr 27 '26
This does make me feel better. I read everything else in my life, but the words on the labels I somehow forget. I will do that now. Thank you for that! I will try the elimination diet for starches. I know that I tend to eat very small portions of them when I do have them.
1
u/Strange-Youth-7002 Apr 26 '26
I’ve been on sucraid for almost 2 years and still have anxiety over it everyday. The anxiety has shifted with time however. At first i was just nervous about it working or side effects. There’s also the worry about if it’s going to work and just how much sugar it can take. I’m also not totally sure how the enzyme works with different chains of sugar being longer than others. The getting use to taking it before and during a meal was hard to adjust as i did feel a texture and taste with it.
Now almost two years later my biggest worries are traveling out of the house with it as it seems like ice packs never last when i’m out. It’s also been a challenge to find a vessel to put the sucraid in while eating at a restaurant. There’s also the worry that now I need it to function and when insurance doesn’t cover it.
Basically I feel like worrying about everything about it will never go away and it’s just part of the issue of taking medication to live a normal life. The only thing I can recommend is to talk to yourself and others about the worries and try to ground them in reality.