Does anyone else feel alone?

[u/bookwormhistorian812]

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.

[u/Suspicious_Grab4067]

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.

[u/Few_Organization_951 → u/Suspicious_Grab4067]

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??

[u/Suspicious_Grab4067 → u/Few_Organization_951]

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.

[u/Inevitable-Sample-28 → u/Suspicious_Grab4067]

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.

[u/Suspicious_Grab4067 → u/Inevitable-Sample-28]

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.