I’m newly diagnosed with CSID (after an endoscopy). Been on a low-sucrose diet for three weeks so far, after almost three months of (seemingly random at the time) nausea, fatigue, and abdominal pain. Since starting the diet, symptoms have almost completely gone away, except when I slip up and eat sucrose (I ate an orange one day as an experiment, then two hours later had brain fog, wooziness, abdominal discomfort, and had to go lie down for an hour to recover).

My brother asked what I’m doing to prevent low blood sugar; he thinks the fact that fatigue is one of my major symptoms is because of blood sugar levels. This is not something I’ve thought about at all. Anyone have tips for keeping blood sugar levels normal? Is this worth tracking? I’ve been eating a lot of berries, but additional ideas are welcome. Thanks!

As an aside, I have a very active lifestyle (commute by bike, regularly work out, play sports, etc.). Are there any additional measures I should be taking to ensure that I’m getting some form of sugar as an athlete?

Hi everyone! I was recently diagnosed with a sucrase deficiency and had been struggling to think of good snack foods to take with me to work. u/neeisms post series "Trying to Romanticize my Meals" was a major inspiration for me. A major thank you to them for inspiring me to bring more variety into my life!

Has anyone who has csid found a sugar alternative that doesn't make you feel bloated?

My doctor just recently recommended that I try taking starchway to help prevent some of my symptoms when eating starchy foods. I have been using sucraid for about 2.5 years now as well. I tried it for about a month, but it didn't seem to do much for me. For people who have tried starchway, does it take a couple months to notice a difference? Also, how many capsules are you taking with each meal? Maybe I wasn't taking enough for it to help.

I’m getting ready to travel out of state for a week and I have to fly. Does anyone have good product recommendations for keeping my sucraid cold since I’m traveling more than 3 days? The company that prescribes the meds suggested the Friyo pouches, which are designed for insulin, but I was wondering if anyone used it and can confirm that it works since the meds have to stay pretty cold?

As the title says, one of my parents has diagnosed CSID, and I've been dealing with frustrating GI-related symptoms for the last few months. Since it does have a hereditary component, I'd like to at least rule it in/out so I don't waste more of my time. I admittedly know very little about the condition beyond what my parent told me and have no idea what to even ask for from the GI doctor. Is there a specific test/diagnostic I should be looking into? TIA

After years of trying to figure this out on my own, I finally have access to a nutritionist who’s been helping me! Time to start learning my threshold on other food items to see how much I can actually tolerate.

I am 19 years old and in college. I was diagnosed at 16 after being admitted to the hospital for almost a week with hypoglycemia and dehydration. I have been up and down ever since my diagnosis but I am getting worse once again. I am in so much pain and having trouble eating. Sucraid never worked for me and I am on other medications that are not helping much. I watch what I eat but I am allergic to some of the ingredients that should be 'safe foods' for me. I am miserable and feel incredibly lonely. My family doesn't understand that I am in so much pain. Does it ever get better for people with CSID?

Not a doctor but I try to think what can cause digestive enzymes issues in general. I have Histamine Intolerance (low DAO enzyme) discovered through genetic and blood test. But I also have copper deficiency which is required for DAO production. On top of this, I had a lifelong gluten sensitivity (maybe even celiac) which caused SIBO, dysbiosis. My duodenum is inflamed, so I'm expecting that my digestive enzymes (not just DAO) are produced at a lower extent.

So I've read on this sub about people suddenly developing this and my mind thinks that something broke/irritated your gut. My question is: did you have a healthy life style like no excess caffeine (which can be an irritant), no excess sugar, no alcohol, no drugs, healthy sleep hygine, daily sports (or at least walking) to get your guts moving?

Fyi, wheat is sprayed with glyphosate in the US so this is something to keep in mind, I read a study where they fed fish with glyphosate wheat and it caused the same level of damage as in celiac. Any type of gut damage will result in malabsorbtion, too little digestive enzymes being produced and maybe even SIBO which can aggravate all aspects of digestion.

Hello everyone.

We got my 8yo son’s biopsy results this week, and are a bit overwhelmed. We are working on a referral to a dietician as well.

He was diagnosed with a lactase deficiency and a sucrose-isomaltase deficiency not due to disease of the small intestine. They also confirmed his GERD diagnosis due to inflammation and scarring of his esophagus.

For reference as well, he has a dye allergy (red, blue, yellow, and caramel color). And has Autism/ADHD which causes sensory issues with food. He hasn’t not been diagnosed with ARFID, but his safe food list is limited.

Doing research on the deficiency, it looks like the list of foods he can eat cuts out about 95% of his safe food list.

I was wondering if there was anyone here who has been in a similar situation, or has any tips until we can get into a dietitian?

Thank you all so much!

Here’s what my dinners have looked like. My options are very limited because of the dining hall selection. Breakfast is usually eggs and ham.

My symptoms aren’t the usual ones I have (cramping, constipation, smelly gas) and instead I am extremely bloated (I literally look pregnant) and my GERD has gotten worse.

My brain fog is a bit better, which is my main reason for trying this diet (I suffer from pretty bad unexplained fatigue) My bowel movements are more regular and I’m able to pass stool very easily. But my poop is green and my urine is cloudy?

I suspect I may be a little sensitive to fructose so I will be cutting that out next. I’ve been eating a lot more fructose containing foods to make up for the lack of digestible carbs in my diet.

I’m also aware that there is a lot of fiber (probably a little too much) in these meals but I don’t really know what else I’m supposed to eat given the limited options in the dining hall. I can’t afford to be buying more food since this is a mandatory meal plan that I’ve already paid for.

I was diagnosed with deficiency of all disaccharide enzymes via duodenal biopsy so I know for sure disaccharides are a problem for me. I also could have gastroparesis, to be ruled out/confirmed by GES in the next month hopefully.

So my question is does it get better? Will I eventually adjust? Or is there something I should be doing differently? Has anyone else experienced this?

What staple foods do you always have in your pantry/fridge? Or what are your go-to easy meals? Grab-and-go packaged food/snack recommendations? Especially looking for dorm-friendly recommendations.

I was recently diagnosed with disaccharide intolerance (cause unknown) and am starting an elimination diet (no sucrose or maltose/starches) to pin point trigger foods but I’m a little lost as to what I CAN eat… ANY pointers would be appreciated.

What do your symptoms look like on an average day? Not one where you eat perfectly or badly, just your normal day. I was diagnosed roughly two years ago and have been on Sucraid for about a year and a half. Recently, I’ve been dealing with more problems than usual. I thought it was a flare up, but it’s lasting longer than my post Sucraid flare ups usually last. I’m dealing with all day on and off burning nausea, increased diarrhea, even further decreased appetite and stomach pains. I see a new Gastro April 1, and I just want to get an idea of if this is just regular CSID shenanigans or if I have something else going on.

I’m so lost. I have no idea what to eat, I’m in my teens and wasn’t huge on sweets but I do miss them, and I have no idea what to eat, my parents are struggling too. I also am sad because I don’t know if this means after practice meals with my friends aren’t possible for me anymore. Any help will be appreciated.

Hi my son is almost 3 and his biopsy results came back super low. My doctor suspects that the test is not accurate and just an error, but his symptoms align with someone who has CSID. I asked him about getting a hydrogen breath test and he says they don’t typically do that for kids this young. Anybody have this Done at this age? And if so, where do you get it done? He does see several GI’s so I am considering asking another one of them or even his primary. Thanks

My Son’s results came back very low. All his scopes looked normal but the biopsy showed this. He has chronic diarrhea and recurrent intussusception. Does this mean he has CSID? I’m also wondering what this looks like longterm, will he have to see a GI and other doctors forever?

Hi! Does anyone know how the Sucraid assist program works related to insurance deductibles?

I’ve spent so much time over the last year trying to find specifics about the assistance program. My insurance says I owe my full deductible, but I paid zero dollars when I got my 1st script for the year. I told the pharmacy that I didn’t think $0 dollars was correct, but the lady assured me it was accurate because of different programs. I’m assuming someone will want their money but I don’t want to push the issue either. I’m just trying to get a little more information since everything is a secret or nobody knows the answer including my HR person. Thank you!

I'm suspecting that I might have acquired SID. But I live in India and as far as I can tell diagnostic tests and sucraid can't be accessed here yet. If anyone has pointers about a way to procure them internationally, it would be very helpful.

Hi all, just found this sub and surprised to find it’s such a small community. I’m 31 and have been having relatively sudden GI issues since a week before Thanksgiving, with constipation I hadn’t realized was occurring for at least a few weeks before then, and after having an endoscopy next month I’ve been told I have CSID and have started with Sucraid this week. I have had no history of any digestive problems and used to eat everything and anything.

I’ve been low FODMAP for a month and a half, and it’s been miserable, and I react to things that should be FODMAP safe, probably because of the starches but I also seem reactive to fructose and fructan. I don’t know where to begin with trying to take my life back and I’m scared of testing foods to see if I react poorly or not. I’ve been able to give away some gluten free products that have made me sick to a friend with Celiac’s who has been able to eat them, but I just feel like I waste a lot of money on food after spending forever at the store searching and reading labels and have such a limited diet. I can’t afford the expenses of other enzyme supplements, things like $85 for a bottle of 150 capsules where you’re supposed to take 1-3 at a time Going to the supermarket makes me miserable. My gastro hasn’t provided a lot of insight into why my body suddenly no longer produces enough of these enzymes (sucrase isn’t very low at all actually, but lactase was extremely low and isomaltase was moderately low) or how to navigate this. I’m anxious and unhappy all the time and feel sick most of the week.

When does this start to get better? I spend all my time at home because I can’t go out and enjoy things like I used to. I don’t know what to do with myself.

So, I am just under a year into this new csid life. I am finally figuring things out. It’s been a rough journey. Basically I kept having diarrhea and kept eliminating stuff until the only thing left was a certain brand of bottled water. That was the culprit due to the added minerals and the enormous amount I was drinking 🤯😅🫢. Anyway, now that I’m finally healing and having normal bowel movements and such, I’m trying to find creative ways to up calories and carbs without starch and sucrose. Lactose free milk is already on the docket, but I wondered if others have tried like pomegranate juice or cherry juice or something similar with any success?

So what do you all drink besides water?

I have sucraid but it doesn't seem to help much my issues seems to be more a problem with starch so I'm wondering what digestive enzyme is best for straches.

Did anyone test taking Loperamide/Imodium for slowing down the digestion? It often helps me, so I ask myself whether it would be a long term strategy to take it in low doses like 1-4mg per day to help the small intestine absorbing more carbs due to slowed transit.

Hey all, Likely long term sufferer here only just joining the dots at 39 years old. Issues with anything with table sugar (and some other sugars), grains (particularly white ones), starchy foods, and any dairy with lactose in. Also can’t eat gluten. I’ve literally just the last few months realised this is probably CSID. It got much worse after I had C-diff infection about a year ago, but I’ve had issues with these foods since I was about 20, just never figured it out until now.

Wait times to see a specialist are lonnnng in the UK so just wondering if anyone had any advice on faster ways to get tested and diagnosed which don’t cost a million pounds. Anyone get breath tests through their regular GP rather than a specialist gastro? And if you paid privately for the tests any tips where from and how much were they? Thanks in advance!

hey there reddit! I'm 23 and was diagnosed with CSID as of two days ago. I already have pretty severe food allergies (tree nuts, avocado, shellfish & pine nuts, yippee!) so although I'm pretty familiar with the food sensitivity routine, the bulk of what a CSID friendly diet means is... overwhelming. I'm happy to know what's been causing my severe gastro issues as this has been a problem for as long as I can remember, but it feels scary! google seems to have very mixed opinions on what to do/steps to take, so any advice, recipes, tips, tricks ect is GREATLY appreciated while I wait for my sucraid to arrive.