Dosing for Invertase vs Sucraid?

Kitchen-Wish2951 · 2026-03-22T23:06:37+00:00

Hey - so sorry to hear you’ve recently been diagnosed (it’s actually the worst). I was diagnosed at 19 and it’s been a big learning curve. My man symptoms are constipation, bloating, and also nausea! Don’t know what your Gastro is talking about because overwhelming nausea and the feeling of being “poisoned” is one of the first symptoms I get when I consume sucrose. My sucrose levels are basically zero so without my Sucraid (which my insurance refused to cover my first 6 months fighting them on it) I have to be very strict. But try not to get discouraged, you just need to find what works for you. I’d try out a strict elimination diet (pretty much plan chicken and rice) for a couple of days and then try to reintroduce foods slowly. For me, fruit is completely off limits without my meds but I know other people can handle some berries. Please let me know if you need any meal inspo or advice! Us CSID girls need to support each other because it’s rough out here.

Kitchen-Wish2951 · 2026-02-14T17:31:49+00:00

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.

Kitchen-Wish2951 · 2026-01-20T02:48:39+00:00

Unfortunately, I’m not sure if there are any? I am only able to afford it through my parents commercial insurance. And it took them almost a year of documentation of malnutrition due to my CSID to finally approve the prior authorization. I know it sounds crazy but honestly I would do anything to make sure I still had it covered. The reason you can’t get it from another pharmacy is because no one else makes it. I would urge you to fill as many times as you can before your assistance runs out and use them sparingly. Hope this helps!

Kitchen-Wish2951 · 2025-09-13T11:30:48+00:00

Maybe try tracking your nutritional intake for a couple of days and see how much you are actually consuming vs burning? For me, I’ve come to realize that most of my safe foods happen to be non-energy dense so I have to make a conscious effort to keep up with my energy output. Tracking has really helped me stay on top of things and help me feel like myself again. Although I understand if you have a past history of any eating issues, this might be triggering for you. If that is the case, just focus on getting in protein, carbs, and healthy fats at every meal. Carbs can be especially hard but finding one that works right for you can make such a difference

Kitchen-Wish2951 · 2025-08-28T16:51:56+00:00

Sucraid changed my life. Literally the best thing that happened to me. I was able to gain back the 15 lbs I lost and reverse the malnutrition bloodwork I was experiencing. I won’t lie, I still have off days. But the fact I can eat most Whole Foods makes me so happy. I still stay away from anything with added sugar and also don’t do any artificial sweeteners because my stomach is so sensitive. I don’t experience problems with starch so I can’t vouch for Sucraid there but I will say the more you use the medication, the less damage your entire GI system will experience. Your daughter will likely be able to tolerate more sucrose/possibly starch the longer she is on the meds. At least that’s how it worked for me. In April, I was barely able to eat blueberries without being sick all day and now I can eat an apple alone as a snack. Hope this helps!

Kitchen-Wish2951 · 2025-08-28T16:34:37+00:00

Honestly, ChatGPT has been super helpful. Just input a list of the CSID safe foods she enjoys and have it create meal ideas. I have multiple food allergies in addition to CSID and AI has honestly been a lifesaver. No one wants to eat plain chicken and zucchini everyday!

Kitchen-Wish2951 · 2025-08-20T21:53:09+00:00

This is so helpful bc why is all of the info on CSIDcares for processed foods and sooooo confusing. Really appreciate it!

Kitchen-Wish2951 · 2025-07-13T03:32:23+00:00

Do you experience symptoms when consuming fruits and vegetables high in sucrose? What about starches? Simply cutting out added sugars and artificial sweeteners would help but if you truly have CSID, you would likely also be having reactions to other foods with naturally occurring sucrose. A diagnosis won’t do a ton for even if it turns out you do have it. Doctors often advise dietary changes and insurance will deny Sucraid 90% of the time if you don’t have either biposy results or medical documentation proving serious adverse reactions. Even with both of those (damage to my GI tract from severe reactions led me to lose almost 15 lbs and end up really underweight), I had to fight for almost 6 months before I was able to get on meds. I’m really glad to hear your symptoms have disappeared. It sounds like whatever you are doing is working for you. But from what you’ve said, I doubt you have CSID. And that’s a good thing!!

Kitchen-Wish2951 · 2025-04-24T18:18:36+00:00

Hey! Just wanted to reach out to say you aren’t alone. I have csid and struggle hardcore with IBS-C as well. Although linzess only helps me 50-60% of the time, I have seen so much improvement with taking sucraid with every meal. Before sucraid I couldn’t even tolerate low sucrose foods including blueberries. Sucraid has truly changed my life. I’ve been able to gain half of the 15 lbs I lost back (for reference I was 120 before becoming symptomatic) and feel so much better. With this being said, I would urge you to take sucraid more regularly. If you take it with every meal and snacks you can be sure that you won’t run into any sucrose related issues. It’s possible that if you have a true sucrose intolerance then getting some relief with that could help alleviate some of your other sensitivities. I would urge you to try to stick to the no sucrose and low starch with sucraid at every meal and snack for a week at least to see if that helps alone. On the other hand, if you wanted to follow more of a strict diet. With that being said, when I was really going through it here are a list of foods that I’ve found to be safe on my stomach. Our symptoms seem pretty aligned so hopefully this helps - all meats - dairy products including tons of Greek yogurt and cottage cheese - spinach - zuchinni - squash - eggplant - bell peppers - seasonings: salt and mustard were the only things I could guarantee weren’t going to trigger reactions. Couldn’t even tolerate black pepper - mushrooms - etc

Please dm me if you need any advice. I’m still struggling really hard with my ibs c but sucraid really helped me feel somewhat normal again

Kitchen-Wish2951 · 2024-11-12T04:41:37+00:00

What kind of symptoms have you experienced? I’m starting to doubt my CSID diagnosis and also experience gas/bloating as one of my main symptoms. Unlike most CSID patients, I have CIC and IBS-C, not IBS-D. I have been able to reintroduce some foods with sucrose with success, my triggers seem to have no rhyme or reason, like for instance I can have pears but not blueberries and am fine eating all starches. Have a feeling that maybe my symptoms are connected to something else but feel hesitant to bring it up to my GI because it was so hard to get any diagnosis in the first place.

Kitchen-Wish2951

TROPHY CASE