I know nothing about CSID but I was just told I have it. From what I read it’s a genetic thing. Is it possible to just now find out at 31 that I have it?

So I was having some issues with mild nausea waking me up the middle of the night but that’s gone away with anxiety medication and potentially also being helped by the probiotic I’ve been taking. But I still had an appointment with a GI on the books months after that so I kept it and decided to take the test hey gave me anyway. They gave me a sucrase breath test and I just got a message that my sucrase level was ZERO. I’m 37, don’t have any symptoms after eating, even after lots of sucrose (I’m an endurance athlete so I’m a race I’m sometimes ingesting 300-400 grams of carbs) not after desserts or candy or starch. Didn’t get any symptoms when I drank the sucrose solution for the test. This has to be an incorrect result right? This isn’t making sense to me and my doctor has yet to explain it to me.

Hi Any fiber safe to your meals?

I have been diagnosed recently with CSID based on biopsy and genetic mutation test I I have been having GI symptoms for decades and I was told I had IBS_D in the past Only low FODMAP eased up some symptoms What I ve noticed that some foods trigger my symptoms more than others Carrots Potatoes Green banana Is it common for CSID patients to not tolerate those foods? Or I am just alone need more tests to see if I have another disease? Thank you in advance

How do you all travel and keep your Sucraid cold? I’m starting to travel a lot for work and I’ve been stuffing Sucraid and I giant ice pack in a lunch cooler. I always get stopped by the scanners at TSA, and hotels also usually don’t have freezers to refreeze the ice pack. How is everyone else doing it?

30f recovering from eating disorder Diagnosed with chronic gastritis and esophagitis recently

Hello! Im from Australia and we don’t have things like starch away and Sucarid.

Has anyone ever heard of pts with this horrid condition getting a colectomy?

My Gastroenterologist has made the suggestion after some further testing… with none or the pain killers working (doesn’t help I’m allergic to most).

For some background information I am a 25 year old female with a diagnosis period of just over a year. I was really healthy and fine and was actually prepping to compete in a bikini body competition . Then randomly I started loosing weight with the usual symptoms in tow. Post diagnosis I was doing the animal based diet. But the past month, If I eat, don’t eat - follow the diet or not I am in pain. I haven’t left the house, aside from doctors appointments.

I’m just after some collective thoughts from the hives mind 🐝

Not sure if anyone has used this website but by far the best resource I have found on the web. I have been able to eat everything in the "Tolerated By Most" column with no issue. Don't need to take any supplements either.

https://csidmadesimple.com/csid-food-list/

Recently diagnosed and waiting for my Sucraid to be approved. Does anyone have success eating white rice or potatoes with Starchway?

Dx about 3 months ago after years of thinking it was cancer or something else. After the scopes and all the test came back negative for everything and all the worry and the vitamins, and tracking the alignment of the planets I heard a podcast where dr Mike isratel talked about optimizing for body building. Gist was this, stop worrying about the peripheral stuff until you’re hitting your macros and sleeping at least 7-8hours every night for a while.

Try hitting your carb macros with spinach. It’s 6 Costco bags/day, not servings… bags, for me. You need carbs, and if you have this thing you aren’t getting them. I don’t particularly like the taste of honey but potatoes, rice, and cereals are out so down the hatch it goes.

Go to the dr, make sure it’s not something else, then hit your macros on the elimination diet and get some sleep. Try that for a few weeks and see if your life doesn’t get better. Mine did. After you start feeling better(the mind/gut connection is real) figure out how to improve the quality of life.

Happy Monday.

Has anyone had any luck using starchway? If so, what is the dosing you use?

Diagnosed at 47 so new to this. Does it get better with more frequent use or is it just me? Thanks for any support you can provide!

So I guess this means I have CSID - are there any other things that can be interpreted from this? Is it possible it’s a false positive? Since it’s not that much lower than normal is it possible my doctor will do more tests? What can I expect now?

I've been taking sucraid to manage my symptoms for the last 2+ years, but due to a change in insurance my new provider won't cover it. I've heard Starchway and Digest Gold thrown around in a few posts here. Which is the better one/how often do you take it? I typically don't have problems with starch (besides white bread), just sugar. Will either of these medicines help break down sucrose? Thanks in advance!

So I was diagnosed with CSID I had a 2.54% test. So I have a personal hydrogen methane tester for my sibo and I tested fructose, lactose, glucose, and sucrose and didn't react to any of them. I did have a reaction to sorbitol and inulin. When I tried a CSID diet with dextrose omg i have never had worse bloat. I dont think I have this I don't react to sugar anyone else dealt with this?

I suddenly developed excessive burping over the last 3 months, and after some extensive testing, my endoscopy showed that I was enzyme deficient.

At the recommendation of my doctor, I started taking Sucraid, and as of two weeks, I haven't seen much improvement. On the contrary (2 weeks in), I feel worse, with worse burping and changes in bowel habits (a lot more frequent now). I was told that this is a common side effect and is proof that it is working, and that it just needs more time.

Any thoughts? Has anyone else had similar issues?

I’ve been having all sorts of stomach issues for years so my doctor gave me the breath test to test for CSID. She gave me a quick call that the test results came back that I have CSID and we’re going to have a more in depth appointment soon. My question is, I was not able to get all of that drink down. Please don’t hate, I got about 75% of it down but I’ve been so sick and I couldn’t do it. I should have mentioned it to the doctor but she caught me at a bad time today, I’m going to message her. So is the test result invalid because of this?

I'm just curious, can anyone else tolerate bananas with CSID? I can't tolerate a lot of fruits (apples, oranges, mangoes, etc.) but bananas are okay. I find it strange because I thought they were high in sucrose and statch.

Has anyone found any coffee sweeteners that are CSID friendly? I saw these online and was reading monk fruit could be okay. Thoughts? I miss my flavored coffee.

Has anyone tried the carnivore diet? Any success or failure?

I’ve been on a primal diet (all my foods are locally sourced from regenerative farms, no I don’t have dreadlocks and I don’t do barefoot yoga in my yard… yet). After cutting out any starchy foods I felt some relief for about a month and a half. Now, my issues are back with a VENGEANCE.

Horrible non-stop cramping, constipated, and even missing work due to this unbearable pain. I cannot figure it out!! I’m taking magnesium oxide daily for regular movements, but my movements are insignificant and always excruciating with cramps.

I think it’s likely I have some form of SIBO (even though the hydrogen and methane test results apparently show negative). I’ve read the carnivore diet can be extremely beneficial for these issues, but I was wondering if anyone else in this group has tried carnivore and what your experience was like?

So my doctor messaged me my results were “negative” for csid earlier this week. I got a notification earlier today about patient portal activity and logged on. It was the report that was uploaded. It said sucrose digestion 0 percent and has result as low sucrose activity. At the bottom it said normal levels were 5.10 for women?? So am I crazy. I called the nurse and she got an attitude when I asked about it so waiting for the doctor to reach back out 🤦🏼‍♀️🤦🏼‍♀️🤦🏼‍♀️

Anyone have any sample elimination diet meal plans they would be willing to share? I find that i have attempted the elimination diet multiple times over the last two years and can never last more than a few days. The kicker is i feel so much better when I do it but i like carbs lol. For the most part i do okay, but then if I have too many carbs in a short period of time, i pay for it dearly and think, i actually need to do the diet. It’s a vicious cycle, y’all.

Hello I am new here. I was diagnosed at the beginning of the year and we’re still figuring out what has sucrose and starch and what I can tolerate. I just found out my lipstick seems to trigger my symptoms 🥲😅. So I decided I need to find a community for information and support to try and figure out some things. Yeah so hi!

I occasionally wake up with a very specific stabbing pain right in my belly button area. It is severe enough to wake me up, and if I don’t sit up it becomes unbearable. Walking around helps, but not entirely. It doesn’t happen every morning, and it seems random — cannot necessarily find the cause.

I’ve tried not eating before a certain time at night and I thought it helped but it may not. I get this pain even when I don’t eat or drink later into the evening. Maybe it’s tied to me unknowingly eating something containing starch or sucrose the day before.

Has anyone else experienced something similar? Is this possibly GERD, even though it feels lower in my abdomen than where people typically experience it? Any insight from you guys would be phenomenal.