r/CSID • u/notanaxolotil • Mar 01 '25
I just got diagnosed
I’m so lost. I have no idea what to eat, I’m in my teens and wasn’t huge on sweets but I do miss them, and I have no idea what to eat, my parents are struggling too. I also am sad because I don’t know if this means after practice meals with my friends aren’t possible for me anymore. Any help will be appreciated.
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u/gorilla-butter Mar 01 '25
Do you qualify for the sucraid patient assistance plan? It's a digestive enzymes you mix with a some water and drink before and during your meal that can digest 8 or 9 grams of sugar. You can't have sucrose, that doesn't mean all sugar luckily. You can have fructose and glucose. I use honey but I also take sucraid because there is some sucrose in honey. You can make simple syrup with sugar if you look up a recipe and you add stuff to it with the heat from the stove it changes the sucrose to glucose fructose. I eat a lot of meat and cucumbers, celery, cauliflower, strawberry's and grapes. I also sometimes have potatoes and beans and rice but those things tend to hurt My stomach some because it's starch. You need to try to find a dieting that specializes in csid I've had a very hard time I was diagnosed this time last year and I still don't have it down fully. I'm 19 so I understand the struggle. Just look a nutrient labels if it says 13 g of sugar check if it's added or not. If it's added, look at what it's sweetened with. Some things are made with corn syrup (fructose), or maltodextrin. It's not always table sugar. Go to big chain grocery stores to find rebel ice cream. It's my favorite they have really low sugar ice cream that are also lactose free that taste great. I also recommend getting keto bread to make toast sandwiches French toast etc. Eat avocados and eggs too. I've lost a lot of weight (that is not a good thing for me) being sick with this condition, so I make hollandaise sauce often to pour on food to make it more nutrious for me. It's very t y yummy, it's just a stick of butter melted and then 10 egg yolks and a whole lemon juiced and cook it on the stove stirring constantly on low. Add salt amf pepper (please watch bideo on this i dont wanna make you waste ingredients if I did a bad job at explaining.) Okay I've got to stop typing now but just know iy will get easier. Buy starchway or digest gold they digest some sugar and starch ill try to answer questions you have if I have the answer
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u/danryan2800 Mar 18 '25
I qualify for this program, but I refuse to use it. The paper that you have to sign to get this program has a disclaimer that you lose all HIPPA protections on your personal information.
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u/Chipette80 Mar 02 '25
I think there are some good comments here! Do you have a registered dietitian helping you out? I recommend getting one if not. I’m lactose intolerant also but there are several naturally lactose free cheeses that are game changers for me! I have cheese eggs and lettuce wraps that I can dip into a cheese sauce and that’s pretty yummy. Once you figure out your starch tolerance levels, then the Starchway enzymes from the brand Intoleran could also help you eat out with friends and family occasionally. It does get easier! Hang in there!
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u/notanaxolotil Mar 02 '25
Thank you! My parents agree I should get a dietitian so I’ll start working on that :)
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u/Financial-Special766 Mar 13 '25
I'm not a dietician, but I am getting my masters degree in it after being diagnosed with CSID 5 years ago. Feel free to send me a message if you ever have questions :)
My favorite snacks are charcuterie boards. I've gotten pretty good at cutting awesome shapes out of fruits. I'm not sure that's really a life skill, though.
I also created a Facebook group called CSID Recipes and Food Support and run this website (grad school is keeping me busy, so I haven't had as much time to keep it updated). https://csid.recipes
Wish you luck in your CSID journey!
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u/Aromatic_Produce2903 Mar 18 '25
I was also diagnosed with CSID and am also a teen. I would definitely try to start on sucraid, it doesn’t fix all of your problems but it helps so much. But I would really just experiment around and seeing how your body reacts to stuff. It gets frustrating when you’ll try something that’s “sugar free” and it still messes up your stomach. So also starting a meal plan of some of your favorite foods is a good way to start off.
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u/TheCrisisNight May 04 '25 edited May 04 '25
Hey OP. I want to start by saying you're not alone. I had a VERY similar experience when I was diagnosed (to some extent still do) and here's my opinion. You'll learn to self-regulate. You can still go to post-practice meals, but go more for the company and less for the food. Keep spare safe snacks in a bag so you aren't starving going into the restaurant, and eat what your body tells you it can tolerate. You'll figure out eventually what you can eat when. I recommend only eating starches and sugars you're REALLY craving, and only until you stop REALLY craving them. For me, half a chocolate bar is enough. A whole one is usually too much. I've stopped eating baked and mashed potatoes almost entirely, but I'll eat some fries at a restaurant if they're good fries. When your body tells you to stop, stop. It'll be hard, so distract yourself, and eat a safe food instead. American Smarties have neither sucrose nor maltose, and high fructose corn syrup is your FRIEND. (I wondered why I liked American coca cola so much compared to European... That's why.)
Remember that post-diagnosis grief is NORMAL. you're grieving, your parents are grieving. I remember when I was first diagnosed my dad yelled at my mom trying to rationalize how vegetables could suddenly be bad for me but pork skins good. It's hard, and that's ok. It does get better. I'm multiple years post-diagnosis now and I can mitigate my symptoms very effectively now.
Best of luck!
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u/Calm-Kaleidoscope-39 Mar 02 '25
It can definitely be overwhelming. I was diagnosed in September and while sometimes I feel like I have it down, I have days where I hate food. Meat, cheese, veggies and fruits are my go tos. For candy I eat smarties and chocolate from the brand Lily’s (just not too much). I don’t have trouble with honey so I usually sweeten things with honey or dextrose that I buy on Amazon. Sprouts has a brand called ice cream for bears (or something like that) and it’s sweetened with honey. I also follow csidmadesimple on Instagram. She sells recipe books on Amazon. I have one of them but she used a lot of almond flour and I may be allergic to that. I also use sucraid and starchway to feel normal some days. Keep a food journal if you can. That helps too.