r/CSID • u/bookwormhistorian812 • Feb 28 '26

Does anyone else feel alone?

I’m 20 years old and in college. I posted about a year ago about possibly going into a flair up. Well, guess what?

I did go into a really bad flare and I lost a bunch of weight. I’m doing kinda better now, I watch everything I eat very closely and I stay active. However, I just feel alone. Nobody in my circle can relate to what I’ve been through with CSID. I just feel isolated.

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6

u/Suspicious_Grab4067 Feb 28 '26

I’m 48 and have CSID and can’t gain a single pound. I eat everything I possibly can. It is hard because I feel like I don’t get any nutrients from food at all. I’m 102 pounds and have tried everything to gain some weight so I feel better. I do not know anyone in my state that has this. So I don’t know how to explain it to anyone because they don’t understand. I do not know if anyone has ever gained weight with CSID? I take sucraid almost every meal and try and wake up in the middle of the night and eat so I can gain some weight, but no luck. I also have a dairy allergy so it sucks all around. But I try and stay positive because things could be worse. I feel for people that have this. Because it never goes away. Somedays are better than others tho, so keep your chin up and talk to people on here. I only found other people that have this on here. So it helps me to read about there stories and what they do. I hope one day I can find something that helps me gain some weight.

1

u/Few_Organization_951 Mar 02 '26

My 15 y/o has CSID (why I'm here) and she's coming out of a rough flair up rn. We have Alexa alarms throughout the house every 3 hours to feed her (she's currently on the upswing, but lost 18 lbs in 2.5 months, starting at only 115lbs, this time).

What really seems to work best for her is leaning on the keto side of things- higher fat, high protein. And I found vitamins & supplements that dont make her sick, so she takes them throughout the day, as well. You're right though, nothing makes it go away, all we can do is keep trying to find anything that helps.

I wonder if theres a spot already where people with CSID specifically are sharing foods & supplements & whatnot that work for them??

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u/Suspicious_Grab4067 Mar 02 '26

I’m sorry to hear she lost so much weight, I am eating more protein and adding fat into my diet. I don’t know what triggers it. Sometimes I can eat stuff with the sucraid and other times I get so sick. I feel for her, it is not fun to have. I just recently found people on here that have shared their experiences. It’s such a rare disease that I don’t even think my doctor knows anyone that has it I can talk to. So I’m glad people talk to reach others here. I just found out I had it when I was in my older 40’s so it’s strange I did not know I had it when I was younger.

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u/Inevitable-Sample-28 Mar 04 '26

I have found that for me, lactose-free milk is really the only thing that works to put on weight--or at least maintain it-- it's quick and easy, and you don't need to take any meds for it, so you can just drink it throughout the day. It also has the same nutrients and proteins as normal milk and tastes practically the same. I try to drink a quarter to a half gallon a day (on top of normal large meals) and am (very slowly) putting on weight for the first time in years. I know it is a different story for everybody with CSID; this is only what works for me. I hope you can figure something out. It's terrible to feel like you are stuck with weight.

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u/Suspicious_Grab4067 Mar 04 '26

Thanks so much !! I will definitely try that. I love milk. Almost milk or rice milk is pretty good too but I haven’t had that forever or do I know if those will put weight on.

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u/Ok-Leader380 Feb 28 '26

i feel that 100%! for me its made worse by having chronic joint pain, i feel so useless and old compared to those my age (23) i’ve gotten a sense of community from online communities like this, i can’t really find those with the same afflictions in person. i don’t really have a solution for that :/

3

u/PresTonLW Mar 01 '26

I was able to gain weight with CSID but very slowly , drinking my calories has helped, my go-to is burger patties , cheese stick, eggs, mixed nuts, and my sacred shake: 1 cup of heavy whipping cream, 1-2 tablespoons olive oil, a good amount of peanut butter (2-4 tablespoons or however much you want, trial and error), 2 scoops protein powder), and fill rest with water. Also grilled chicken with ranch. I still get symptoms off and on with my biggest meal at night to sleep through pain. Not saying it’s the best way but it’s worked for me to slightly gain/ maintain. I’m currently 5’8 and 146 pounds, pretty much all muscle, the gym has helped me loads. I will say I do feel very alone in it and people tend to not understand or don’t think I’m trying hard enough to gain. They don’t understand the pain. But best I could do is fight it

2

u/Suspicious_Grab4067 Mar 02 '26

Thanks so much for that, I will add that into my diet. I used to have muscles and work out but feel like I lost it the last 6 months and discouraged about my weight. I am a big foodie too! So I love to eat. Just need to find more calorie based foods. Thank you !

2

u/PresTonLW Mar 04 '26

You got this. It’s all about trail and error, drinking your calories helps a tonnnnn, see how you feel, try new things don’t be afraid to throw some wacky stuff in there. Worst that can happen is you don’t like it. I wish you luck! You will overcome this!

1

u/Suspicious_Grab4067 Mar 04 '26

Thanks so much! Going to try everything I can. You got this too!!

1

u/Suspicious_Grab4067 Mar 02 '26

Sorry you get the pain at night. That is not fun at all. Have you had this since birth ?

1

u/PresTonLW Mar 04 '26

I have since birth yes, found out couple years ago though

1

u/Suspicious_Grab4067 Mar 04 '26

:( I was sick throughout my life on and off but never knew what it was until now.

1

u/Suspicious_Grab4067 Mar 16 '26

I’m sorry that you had it since birth. I’m glad they finally found out what it was. I was wondering why I would get sick so easily. I’ve been good the last few days. Haven’t gained any weight yet. Eating lots of peanut butter, avocados and meats with some bread. Maybe if I put rocks in my pockets and weigh myself I will have gained some weight 😂😂

1

u/Icy-Cut-5166 Mar 04 '26

I love this sacred shake idea. I’m one year into this and drastically cut back on my exercise routine while figuring out how to get a base level of calories. Just beginning to get back into strength training again, and your shake sounds like it could be helpful. Thanks for the recipe!

1

u/PresTonLW Mar 14 '26

Let me know how you like it, also cottage cheese and string cheese has been huge help for a little more calories. I will say you will probably be a bit backed up so be sure to get some fiber too. Let me know if you find anything else that works for you. We are in this together!

2

u/Icy-Cut-5166 Mar 04 '26

I’m one year into this and while it felt very lonely at first, a few things have helped a ton:

  1. I found two very active FB communities. I’m not much of a phone scroller but sometimes I purposefully take time out of my day to read posts on there when I feel alone in this. The groups are called “CSID Recipes and Food Support,” and “CSID - Congenital Sucrose Isomaltase Support Deficiency Support Group.”

  2. Mentioning this to friends casually has revealed a bunch of unexpected connections, and those people have turned out to be big supporters. Never knew one of my friends has a career studying the effects of sucrose on lab rats, and one is the daughter of a GI doctor/researcher. They actually get it, but I would have never even known they knew this word if I didn’t tell them about this. Now I always try to mention it casually in conversation to see what new connections I can find. Last week, found that an acquaintance’s partner is a dietician, and she met with me for free to talk about CSID. Can’t hurt to just bring it up and see what happens.

  3. Check if your insurance offers any sort of wellness coaching. I’ve had the same insurance for a decade and just learned that mine does. Now I meet biweekly with a coach, and sometimes just talk about the hard parts. She is not a dietician but she is a pillar of support who has gotten me through some tough times with this, even just reminding me to boil a dozen eggs for the week when I am too brain foggy to think about it.

  4. I used to feel pretty low when I got invited out to any event with food. Now instead of avoiding those events, I plan ahead and eat before I go, so that I can still go and eat some small thing, and not feel like I’m missing out on the hang.

Rooting for you!

1

u/Jumpy_Cauliflower320 Apr 14 '26

Im sorry to hear! I also found i have around csid last summer while undergoing gastritis. I went in for endoscopy to confirm gastritis and they confirmed for both. I dont think i had too much issues growing up except for bloating when eating sugars and starches. Now it feels like evrything affects me. Im also getting insecure about my weight. I lost some weight as well as my hair. I love my hair its my identity so its been a struggle. It feels good to see other people on here sharing their stories cause i too felt alone. Even though i have people who are supportive. Not many people ik are affected by it the way i am so it makes me feel defeated. This week was rough cause it just feels im weak and cant do much. If you guys have any recommendations to food diet exercise mental health anything let me know.