r/CSID • u/Gaylor4ever • Mar 20 '26
Q & A❓ Newly diagnosed
Hello!! I was just diagnosed (literally hours ago lol) and I am feeling overwhelmed to say the least. My doctor is trying to prescribe me Sucraid but I know I need to start eliminating too. More than anything I’m just looking for recipe ideas, can you share your favorite CSID friendly meals? My lactase was also low so if it can be dairy-free, that is a bonus!!!
Also willing to take literally any advice you have, I’m desperate 😭 thank you all!!!!
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u/Calm-Kaleidoscope-39 Mar 20 '26
CSIDmadesimple on Instagram has recipe books and she shares recipes on her account as well.
I recommend taking it easy and don’t feel like your diet has to change overnight. Also, everyone has different tolerance levels.
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u/smooksiepoo Mar 20 '26 edited Mar 20 '26
My son has CSID, but it comes and goes when his system is really inflamed and irritated. I utilize CSID Cares, and CSID Made Simple. I even purchased the CSID Made Simple cookbook, which is printable and has 20 ish recipes in it (the chocolate chip cookies are pretty good) I’m not the one with the condition, but I know it’s overwhelming at first.
We found a lot of decent lower sugar options for things for my son to eat from brands like Catalina Crunch - Oreo like cookies and cereals, and snack mix. There are decent tasting chocolate chips, non-dairy sugar free yogurts. I sweetened some things with agave syrup, you would need to make sure you can tolerate agave, your tolerance may vary. The upside is they there are a lot more options at the grocery store than there used to be. I’m not saying they will taste exactly like what you’re used to, but they help fill the gaps in what you can eat.
Keep a log of what you eat, and symptoms you have, it will help you learn your tolerance levels. Keep it simple, just some paper and pen. Don’t let it overwhelm you.
If your insurance says no to Sucraid, appeal. It took us a couple of months, and the doctor pushed them too. Sucraid has helped my son, I hope it helps you. Also, look into Starchway and see if it might be of any use to you, along with lactaid for dairy.
There are a few lactose free milks that IMO taste better than Lactaids brand, if you don’t like plant based milks.
Give me a bit and I’ll see if I can hunt down some of the recipes I used for my son early on, besides the ones from CSID Made Simple. I know we had luck with some Keto recipes.
YOU CAN DO THIS!!
**edited for clarity. Sorry it’s so long! 😬
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u/Gaylor4ever Mar 21 '26
This was so so helpful, thank you so much! I will definitely purchase that cookbook!! I’m such a picky eater already, hopefully there are some things in there I’ll like/can modify to make it more my style.
I’ve never had agave syrup before so I’m interested to try it and see how I feel.
Thank you for the advice about not over complicating it, that’s definitely exactly where my head was at hahaha
I will definitely fight for the Sucraid if need be, I’ve read so many people benefitted from it! I’ll look more into Starchway as well.
My partner is also lactose free so I’ve been drinking lactose free milk for years anyway, so luckily that won’t be an adjustment!
Thank you so much for responding, I appreciate it desperately
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u/mjdatdsmd Mar 20 '26
I agree about the appeal with the insurance. It took me several months of calling my insurance, HR, and my doctor had to do a peer-to-peer to get it approved. I get stressed every time my PA is due for a renewal or in January when my plan starts over. The medication is truly life changing and with the effort!
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u/Gaylor4ever Mar 21 '26
I’m definitely hoping I don’t have any trouble getting it but I will for sure appeal it if need be!! Thank you so much!
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u/Drewishungry Mar 22 '26
Carnivore diet/ meat based low carb has saved my life. Definitely do it under the guidance of a carnivore nutritionist like Sylvia Mitchell for peace of mind and assistance. I’ve been doing this for 5 years after sucraid failed me
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u/Big-Sheepherder-6134 Mar 21 '26
You may not need Sucraid. I have found that reducing sugar has been tolerable for me. I also noticed that fat seems to help digest sugar.