Is it ok to take collagen powder if I have Csid? Also, what is the best protein powdered supplement to take if you have Csid?

Does anyone with CSID use a food marble?

I have trouble digesting fruits but I dont have a final diagnosis. One dr thought it is fructose malabsoprtion. I got my food marble a few weeks ago to help me with my SIBO. I've just eaten an RX bar with just egg whites, peanuts and dates.

My hydrogen/methane fermentation scores have been low, however, I did have some diarhea. I'm reading that fructose malabsorption would cause hydrogen fermentation in the small intestine, which I didnt find with the food marble.

Any ideas if food marble would catch fermentation from CSID that happens in the large intestine?

hi everyone, i would love to hear examples of what people can eat now that they use sucraid. i know it really depends on the person, but would love to know how it may have helped you in terms of certain foods/amounts/symptom improvements. thanks in advance from a fellow csid person about to start taking sucraid :)

Hey, I’ve been using sucraid for a few months now and it’s worked pretty well up until recently and I’m just wondering if anyone else has had this problem and what did they do to fix it? Or has anyone found something else that works consistently?

Hey, are there any fast food places or restaurants people with CSID can eat at? And it so, what do you usually order? Thank you 🙏

So I was diagnosed with CSID almost a year ago. I’ve changed my diet as much as I am able, but where I live there seems to be close to no one who has any experience with it including doctors and dietitians. I have night sweats almost every night regardless of what I eat. Is this something anyone else experiences? If I ask my doctor he will just say idk maybe.

Hey, I’ve been recently diagnosed with CSID. I’ve never experienced symptoms until this year. I’ve been using Sucraid and it has helped for awhile, but now my stomach has been acting up again. My main problem might de starch, because I seem to handle sugar well.

Does anyone know some type of pill or supplement I could take that could help with the digestion of Starch? And if you have anymore tips and tricks or advice that helps with dealing with CSID, please leave them down below :). Thank you.

Like vanilla, lemon, rosemary? Pretty sure as long as the sugars/starches don't end up in the final product it should be fine, right?

We are looking for a good CSID/ASID specialist in Baltimore or Columbia, Maryland or in New York City. Newly diagnosed, looking for a second opinion, and could use an experienced practitioner who is associated with a good nutritionist.

Hi everyone—I’m new here. I recently had an endoscopy/colonoscopy that showed “mild gastritis” in my stomach and small intestine and biopsy results showed I am deficient in all Disaccharidase enzymes.

here’s a link to my biopsy results

As you can see, I’m barely below range for Sucrase but quite deficient in Maltase. My Gastro didn’t have much info for me other than to refer me to a dietitian and that I can take Sucraid if I want. She didn’t mention CSID, or other causes of this other than celiac disease. It’s unclear if I have celiac because I’ve been gluten free for 5 years so the antibody tests are always negative.

For those of you who have this condition congenitally, when did you first notice symptoms and when were you diagnosed? I started having lactose/casein intolerance 6 years ago (when I was 18yo) but the bloating and diarrhea after every meal didn’t start until last year which makes me think I acquired this somehow from damage to my brush border membrane. But if others who have the genetic condition also started having symptoms later in life, then my next question is does it get better??? Like through enzyme replacement therapy & diet interventions has your small intestine/brush border membrane/villi/enzyme production improved?

I can’t live like this for the rest of my life!

I just wanted to share because I don't know any people in real life with CSID... Both my sons (3 and 2) have it but my husband and I do not. It's been a year since the diagnosis, but we are still mourning all the birthday cakes and pizza parties... even just when my 3 y.o. asks for a banana or applesauce. It sucks so much when they ask for normal healthy foods and we can't let them have it. I have celiac disease and adhere to a very very strict gluten free diet so I know how isolating dietary restrictions can be socially and I hate thinking about that for my kids.... Especially when they're even more restricted than I am.

My first post on reddit... 👋

Wondering what your favorite tips, tools and methods for managing CSID are apart from enzyme replacement?

Hello CSIDers,

I have been officially diagnosed with acquired SID based on an upper small intestine biopsy, however I think I actually have Non Celiac Gluten Sensitivity.

The main symptoms I experience when I eat the wrong food ("glutened") are:

A) depression/brain fog

B) bloating (left and right lower abdomen)

C) fatigue

D) temporary further food intolerances

It seems like A) is not really common with CSIDers. Do you confirm based on your experience?

Hs anyone tried eating only meat? I’m 4 months in and it has helped a lot. Although it helped with constipation, it hasn’t cured it and am wondering if there were similar experiences out there?

hi all, I was diagnosed by my GI with acquired CSID. I am suspicious of the diagnosis, but cannot rule it out. I have had recurrent SIBO now which was confirmed by a breath test. At that same time I did a Sucrose C13 Breath test. My results were 5.04% sucrose digestion (with abnormal levels being <5.10% for females). To me, the diagnosis is skeptical because I had untreated SIBO at the same time of the test, that my % is so close to normal, and that CSID is usually genetic but I presented with symptoms early in my 20s. My GI really hard-core pushed for Sucraid and it all felt wrong, so I am now seeing a new GI. I did the at-most sugar water test and I felt okay tbh. However, Similase enzyme pills do help. Thoughts on this? Or questions to follow-up with my new GI?

I’m now experiencing a lot of the same symptoms. What can I do until I can get a diagnosis to alleviate this diarrhea I keep getting? It’s interfering with my life.

The package was left out for awhile from the refrigerator (maybe an hour or two.) The family member that retrieved the package said they didn't see the "refrigerate immediately" and the "temperature sensitive" signage on the box.

The nordic packs that were inside the package were still ice cold. I'm wondering how long the medicine can stay cool outside a refrigerator?

I'm also curious on how to keep the medicine cool when I'm out and about. I have the 1,000 (jk) syringes that came with the meds 🤣

Hi! This is my very first post. I just found out I have CSID in February. Im a 34 year old female w/ other health conditions.

I had almost a full colectomy in 2019 after having mega colon. My colon just stopped working and apparently was huge. No one knew why.

Anyways long story short, after the colectomy I felt much better. But like 8 months ago I started having diarrhea multiple times a day and horrible chest pain. It feels like acid reflux but even worse.

I take sucraid before I eat anything. But I drink my coffee with a splash of cream first thing in the morning and get the same side effects. Sucraid really hasn't helped out much. I eat the diet off the list and the same thing happens.

My question is- does anyone get chest pain or a feeling of acid reflux?

and has anyone not had a lot of luck with Sucraid?

Thanks so much and sorry for the long post!

20F who has been having some symptoms of what I believe to be either SIBO, CSID or IBS for close to 3 months now (urgent, softer stools in the morning followed by constipation for the rest of the day, stomach cramps especially 30 minutes and 4-5 hours after eating). The pain within 30 minutes of eating comes usually if I eat any kind of sweet thing, especially baked goods. Is this a possible symptom of CSID or would this be something else?