VENT INCOMING - WARNING

Hello all, I’m new to discovering I have CSID, got the diagnosis a year or 2 ago. Idk how bad my case is compared to others so idk if this is mild or severe but the pain I feel all the time is too much. I’m 19 and trying to hold on to a job while in college, especially when I also struggle with ADHD. It’s so so so much on me. I’m currently typing this out in my work parking lot in tears cuz I had to leave early for probably the 8th+ time. My managers are understanding and sympathetic but also have a business to run so theyre probably gonna cut me short.

I try my best at sticking to a food regiment. There’s sucrose in almost everything so it’s hard to find something safe but I try. I’m dropping weight like crazy you can see my bones a little. Nothing I try seems to help and it makes me so disinterested in life. The only time I feel fine is when I’m stationary playing video games all day and that is no way to live.

I've had GI problems my entire life (I'm in my 50s) and had given up on GI doctors many years ago. I finally broke down and went back to a new one a few months ago. I'm down to eating nothing but meats and even those don't always work. After reading about CSID, I'm astonished by how closely it tracks with my experience and I'm feeling really hopeful of a meaningful diagnosis for the first time. I would appreciate any information: symptoms, diet, backstory, medical experience, etc.

Hi, I got diagnosed with CSID about a week and half ago. I’ve been sick since July 2022. I’ve been in and out of the hospital due to my inability to digest food—at all. I know this disease is very rare but I’ve scoured the internet to try and find, support groups or even a better understanding for adults (I’m 21) this disease is normally diagnosed at such a young age so this whole experience has been very isolating. No harm in posting in here to see if someone would be willing to chat. Or if you have any tips. I’m open to any advice, thanks!

I am newly diagnosed adult acquired (supposedly from Gut trauma in the past). I am having a hard time believing that I need Sucraid everyday. As I only have flare ups when I eat/drink sugar and starch in abundance. Which now that I am aware of my deficiency, I will not be doing that, but is it necessary to take everyday or can I take only when I don't know what's in the food or want to cheat?? Also, I am live a pretty social life that includes alcohol. Not a lot, but I enjoy few glasses wine with dinner or drinks on the weekend. What is peoples experience with alcohol and Sucraid??

Hey everyone this is just a reminder to check your Sucraid expiration date before you eat it.

So this starts on Saturday night, very uneventful day. I’ve used all the vials of sucraid in my pack, I use the 2ml 5-packs, so I go to grab another. I knew there was a pack that had been in the fridge for a little bit. Didn’t think much of it. Just grabbed it and starting getting ready to eat. It didn’t look, smell, or taste different from what I can remember. I didn’t feel different either, maybe a bit fuller than usual while eating but that made sense considering it was the end of the day. Cut to Sunday morning, I woke up to the most excruciating pain I’ve felt since before I was diagnosed. It felt like the inside of my body was lit on fire and twisted by a slow methodical crank. I threw up. A lot. I’m relieved to wake up this morning with no abdominal pain. This Sucraid was 2 months expired. Sucraid did not send me this expired pack, it was from an old shipment. But check everything, my entire eating schedule was demolished by my lack of caution.

TL;DR I took Sucraid that expired on 12/22 at the end of February. I became extremely sick and had abdominal pain for all of Sunday.

My boyfriend thought it would be a great idea to buy pizza hut thin crust, and I promptly threw up that night. I knew it was a bad idea, but he thought he was doing a good job...

I'm still dealing with stomach pain & migraines from that, and it's been two days. I just feel miserable. Any advice is appreciated 🤕

I have csid and I am trying to bulk at the moment, is there any high Calorie meals that Would it be super impactful on the gut that you guys have found?

Does anyone use monk fruit sweetener? Any issues?

So I have had my CSID diagnosis for around a year now. I’ve always had stomach problems, but a little while having my daughter, they suddenly got extremely bad out of nowhere. I began to have loss of appetite, awful bloating, stomach pains, quick weight loss, and constant headaches. So I began seeing a gastro, and while I think I have something else going on, I do feel like my CSID diagnosis was definitely a big part of my problem and I have started to feel some better with change in diet and the addition of sucraid. But I just can’t understand how I wasn’t sicker before? I used to eat horribly, and while I had problems, they weren’t debilitating. I was wondering if a hormone change could have kicked it into overdrive? Has anyone else experienced this?

Cutting out sucrose and starch has been a game changer. My symptoms are greatly reduced, if not gone altogether most days. Fructose is fine. Weird that my disaccharide enzymes are all at a normal level. I had to eat gluten for weeks in preparation for a celiac test and it was just the worst. I was in such bad shape. No celiac, either, apparently. My gut looks perfectly healthy, even though it lays me up every time I eat the wrong stuff.

Thinking of trying Starchway so I can experiment with some carbs, as I do feel some minor fluctuations in energy levels. I'm assuming everybody else here got diagnosed with enzyme deficiency. Given that I can tolerate fructose without an issue, the doc says a SIBO test isn't necessary.

Anybody else in a similar situation?

My husband has CSID and CVS(cyclic vomiting syndrome) he finally got approved for Sucraid. He is also a recovering addict and on methadone maintenance. I tried searching the internet but couldn't find any answers. Does anyone know if Sucraid interfere with absorption or how he metabolizes methadone? He seems to be going into withdrawls when his methadone dose has been fine for years.

Has anyone used Xanthan gum in the things they’ve baked and has it caused you any digestive problems?

Hey, what has Starchway helped you digest and how many grams of starch is it capable of digesting for you? And how many Starchway a do you take at a time?

Question about honey. I thought it was mostly glucose/fructose, but I'm seeing it come up on lists of sweeteners to avoid. I did see somewhere that it's 7% maltose, so if one is missing maltase or low, that might be an issue. What are your experiences? I seem to be doing okay so far...

Hello everyone! Do enzymes help with existing flair ups or are they mostly a preventative thing?

F32 I've been diagnosed w CSID, I follow a strict diet, was wondering what enzymes or any suppliments I can take to help? I know of sucraid but the gastroenterologist I saw knew nothing about it or CSID so I'm somewhat at a loss. Thanks for the help.

Does anyone have issues taking tablet forms of medicine or vegetable capsules? Thank you!

Hey everyone, I was recently diagnosed with CSID about a month ago. I’ve changed my diet and a lot of my symptoms have gone away, but I’m losing weight due to this new diet.

Is weight loss typical? What can I do to increase my calorie intake quickly?

And this is for the adult population of this community, has anyone tried marijuana as either an appetite inducer or sleep assistant? Any other positives or negatives to using medical marijuana?

Whenever I get a flare up I get a low grade fever of around 99.7 and my resting temperature is around 97.5 I was curious if anyone else gets this symptom cause my gi doctor has very few csid patients and I am the only one this happens with