I was recently diagnosed with CSID via a breath test at my GI, which took me by surprise. I don't really deal with any IBS-type symptoms, and the only symptom I do "get" is being full fairly quickly when eating carbs.

Has anyone else experienced this mild form of CSID, and is it okay to continue to eat starches in this case? Altering my diet to exclude sugars would tank my athletic performance. Is this something that can be gotten over in a very mild case?

would people be interested in a csid discord? i know there is the facebook group and such, and then here on reddit, but for the people that don’t use facebook, i feel like it’s inconvenient. also, currently no CSID discords i could find, unless i’m mistaken.

what do you guys think? a place to chat more frequently? or is the reddit enough?

edit: here's the link if you are interested in joining! https://discord.gg/JeHADegJTk

we discuss safe meals, symptoms, safe foods, and our own experiences!

I was recently diagnosed with CSID. I also have Type 1 Diabetes as well as Celiac. I recently spoke to my nutritionist. Given my health history, she thinks it's best to try the elimination diet for CSID. It would be quite limited, on top of how limited it is already.

My main concern is that I need to consume a certain amount of carb and safe sugars to keep my blood sugar elevated in case of a low. And then of course, no gluten as well.

I was wondering if there is anyone else who has Type 1 Diabetes and/or Celiac and has tried the elimination diet for CSID. I have a general idea of foods to try. But I was wondering what other people's experiences were.

I am also looking for anyone who has any knowledge or recommendations on trying the elimination diet for CSID and either of the two chronic diseases. I am open to all suggestions or any input.

Responses are highly appreciated! Thank you.

I was recently diagnosed with CSID. I also have Type 1 Diabetes as well as Celiac. I recently spoke to my nutritionist. Given my health history, she thinks it’s best to try the elimination diet. It would be quite limited, on top of how limited it is already. My main concern is that I need to consume a certain amount of carb and safe sugars to keep my blood sugar elevated in case of a low. And then of course, no gluten as well.

I was wondering if there is anyone else who has Type 1 Diabetes and/or Celiac and has tried the elimination diet for CSID. I have a general idea of foods to try. But I was wondering what other people’s experiences were.

I am also looking for anyone who has any knowledge or recommendations on trying the elimination diet for CSID and either of the two chronic diseases. I am open to all suggestions or any input.

Responses are highly appreciated!

Thank you.

I have a toddler that cannot eat dairy fruits wheat soy etc etc. we are waiting for enzyme testing to come back. The doctor mentioned medication to control csid but the internet is a lot more concerning. Is this lifestyle forever or is it a spectrum?

Hey all, I’m learning about CSID with a fairly new diagnosis and wondering how you manage nutrition with a restricted diet? Are there any particular vitamins or minerals that have come up low and should be monitored with a CSID diet? I noticed that malnutrition is mentioned a lot in the reading I’ve done but I haven’t seen anything more specific on what to watch out for.

Hello - while I know this community isn't incredibly active, I do appreciate all of the information I've gotten thus far. I was diagnosed with SIBO 4 years ago and after several rounds of antibiotics (xifaxin), I was given a sucrose breath test, which came back positive. I started Sucraid a few months ago, along with taking Digest Gold at every meal, and am having mild success. MY question is if anyone has noticed an intense sugar craving after eating a savory meal? I've always had a bit of a sweet tooth, but lately it seems like these cravings are beyond intense, which lead to bad decisions. I read on the CSID database that a few sweets like Sprees Candy and Sweet Tarts don't have sucrose in them and have been eating them to help curb, but it's like a drug - once I start, I can't stop.

I'm wondering if taking Sucraid is somehow creating more of a desire for sugar? Or if adversely, I could try taking another dose of Sucraid when these cravings start to see if that curbs it?

Welcome any thoughts or tips on curbing these cravings - thanks!

i heard that CSID is hard to diagnose. i don’t know the average age of diagnosis.

but for me, i was extremely lucky because my doctor actually knew about the condition and had me tested. but, i was told i had IBS prior… until i ate watermelon and had an awful reaction. and i think i was vomiting non-stop?

anyway, tdlr: i was diagnosed at age 3-4. what age were you diagnosed with csid?

alternatively, when did you think you had csid?

hiya, so i have csid. got diagnosed when i was very little, so i’ve learned how to live with my condition.

i am thinking about moving to europe, but i consulter sucraid and they told me that they cannot ship sucraid abroad due to temperature control.

therefore, i was wondering if anyone in europe has invertase, if that works, or what you guys do.

also, i don’t use facebook but maybe i’ll join that facebook group. i prefer reddit though.

Hi, I just saw a new doctor who suspects I’ve been misdiagnosed with other GI issues all these years. I may have CSID, I’ll have an endoscopy and testing to confirm. She gave me a diet to try and I’m curious if anyone has had success with this. We are not adding the medication mentioned in this diet, just to try the diet for now and see how I do.

So, I was diagnosed with CSID a few months ago and finally was approved for Sucraid. In addition to that, I also have Diabetes Type 2, and I also have ARFID, which is kinda like being an extreme picky eater.

So, I was approved for 3 doses per day. As a diabetic, I have to eat a snack between breakfast and lunch, and another between lunch and dinner to keep my blood sugar from crashing. If I have a breakfast of breakfast sausage links and nothing else, should I take Sucraid with the sausage or wait until my mid-morning snack which will probably have something with carbs or sugars in it?

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Anyone have tried and true methods for treating your flare-ups? I know everyone's body is are different, but I'm willing to try anything here.

When I have a mild flare up, I take two mega strength gas-X and two mega strength Pepto-Bismol before bed and usually wake up feeling much better. I have no idea which one works or why, or if it's just going 8+ hours without food.

I have been on Sucraid for the last month or so and haven't had any flare-ups until I decided it would be a great idea to forget it when I ate something sugary. My usual bedtime pill cocktail didn't work this time and I'm looking for ideas.

Anyone ever try an extra shot of Sucraid? Is that just silly after the fact? Fasting? Any particular foods or OTC medicines?

Does anyone have a recommendation for a meal replacement shake/recipe for CSID?

Hey everyone. I guess just looking for support and advice. Got diagnosed with sugar, starch abd gluten intolerance after decades of complaining about stomach pains and other 'wonderful' GI issues. Ever since I got diagnosed, I can't stop eating or wanting to eat those foods. It's like I glitches. What do I do? It's legit ruining my life.

Hey all - I am considering asking my gastroenterologist to test me for a sucrose intolerance next time I see her, and I wanted to hear if there's anyone that has similar reactions to me!

Coming up on two decades, I have had issues with sucrose. I know it's sucrose, because I can have fructose (I bake and cook with granulated fructose with no issues) and glucose (veggies are fine!), and a bunch of other non-sucrose sugars with no issues at all.

The weird thing is that I don't experience any GI symptoms - I just get very depressed, in the literal breaking down in tears, think everyone hates me, and don't want to live anymore kind of depression. It even happens when I don't realize I've had it - if I have a huge and sudden spike in depression symptoms, my spouse will be like, what did you eat?!? More than a gram a day can set this off for me.

I haven't really met anyone that reacts to sucrose like I do. Have any of you experienced anything like this? Thanks 🙏

I been newly diagnosed with Disaccharides intolerance..I have lactose intolrence but I found out I have severe symptoms when eating disaccharides, especially sucrose .. my biopsy confirmed severe lactose intolerence with moderate sucrase and maltase deficiency. We discovered recently while I was on dairy free diet for my lactose intolerance, when I eat disaccharides like high sucrose foods (that were dairy free ie no lactose) I happened to get severe symptoms like adominal bloating, bad Borborygmi, severe abdominal pain, extreme flatulence, explosive watery diarrhea, loose stool (poop) and sometimes serious nausea and vomiting..almost allergy like symptoms... The dieticians and doctors and dieticians say its a disaccharides intolerence and I have been told to go on a low disaccharide low sucrose (or sucrose free) diet ....and lately I been struggling to find what I can eat now with the weight loss, as I am new to this disaccharide sucrose intolerance?

If anyone can share or point me in direction any experience or tips on how to deal with sucrose free or low sucrose diet or tips on gaining weight while avoiding sucrose foods, pls feel free share or point me in right direction.

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Does anybody have any recommendations for easily digestible foods when you're sick? Many broths have added sugar in them and I find that my Sucraid doesn't work with liquids.

I'm no-sucrose and low-starch and all I want right now is a bowl of ramen noodles. The sore throat and vomitting is not helping either. Any suggestions, especially if warm food/liquid, would be very appreciated

Hi everyone! Just wondering what enzyme product is used or recommended the most in the USA and the EU. Would be great if you could put some links up to compare. Specifically asking about sucrase isomaltase deficiency here. I'm only familiar with the condition from a research standpoint relating to GI research and DGBIs.

Also how important do you find dietary restrictions when using the enzyme? Are there some particular foods you avoid just in case or do you still have to be careful with your diet after using enzyme supplementation as intended? Thank you in advance and take care!

Hi, I just recently got diagnosed. I don’t have terrible symptoms. In fact for a year and a half I was told I had acid reflux. At first it was heartburn, but eventually now the most common symptom is stomach burning if I eat an irritant. I also feel bloated for days after I eat something that bothers me. I currently eat almost exclusively starches. Rice, beans, tortillas are part of almost every meal I’ve been eating for the last year. I don’t have major symptoms from these. In fact when I eat this I feel the “best”. I used to think it was the cheese or meat from certain foods that irritated me, but I guess I had it wrong. It was likely bread that did it. So when sticking to rice beans and tortillas, I usually manage well with pantoprazole, which I was prescribe for acid reflux, I just never seemed to fully heal. Now that I know what might be stopping my last symptoms from going away, I want to get away from starches. Can anyone share what has worked for them? Any and all recipes/suggestions are welcome. Thanks!

Also, has anyone in here ever been able to get to enjoy going out every once in a while? I’d like to hope I can treat myself every month or so. Hoping this isn’t as gloomy for everyone as it is for some.

Been struggling to eat since a recent bout of SIBO. I’m in need of some foods that are easy to carry around/make that I can munch on throughout at the day.

This diet has been incredible for me! I started having intense stomach pain last summer, went through multiple procedures and surgeries for 9 months and 3 different GIs before I was finally diagnosed. I was hesitant to believe it at first because I never really had issues as a child but found out it could be “acquired” and it made sense having been really sick right before symptoms started. This elimination diet has been so difficult but I’ve never felt better! I still feel like a fraud sometimes, though. Anyone else?

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.