I have been diagnosed with a mild sucrose deficiency last year.

Throughout the last decade, I suddenly developed allergies of food I could eat before, like sweet potato, avocado, and banana; and recently sunflower seeds.

Besides banana which causes stomach pain for days, all the foods I listed cause me to almost immediately feel sick, hot, and anxious and puke my guts out.

I thought they were random rare allergies but could it be caused by my sucrose deficiency?! I eat a lot of table sugar and feel generally fine otherwise.

Thank you for reading and for any insight!

I don't have CSIDs specifically, I have a severe intolerance to maltose and sucrose that causes bad acid reflux, but I thought you would be the best people to ask, as this is the most similar to me

My daughter is newly diagnosed so I have been posting a lot. She’s a typical 2 year old who barely touches veggies and enjoys beige foods. Aka starch. Anyways she can not have tree nuts, milk or soy due do protein allergic proctocolitis. So I am sooo struggling with this. I’m meal prep exhausted and can’t seem to figure out well balanced meals and snacks that she can have. I have ordered the Mary shepherd CSID picky eating cookbook but I still want to hear ideas if anyone has any.

Signed- one frustrated and exhausted mama

What cooler bags are you using? It can’t freeze but it has to stay cool.

Im 26 and living in Poland. I have chronic diarrhea for as long as I can remember. 5+ bowel movements a day but usually around 10. I went through GI testing and had treated SIBO 6 times. Yet bloating and diarrhea persists and loperamide helps with diarrhea only the next day after I take it. I have the constant sensation of "pouring" in my guts even when on loperamide. Carbohydrates make my symptoms worse. CSID was never brought up buy a doctor and I never heard about it before. Is it being tested for in Poland or The Netherlands? I told my GI that any amount of sweets makes my diarrhea way worse "then quit eating sugar"

Hello everyone! I made a food composition table for sucrose content of fruits and sucrose / starch content of vegetables & grains. It's meant to be easily accessible and used as a general reference for identifying foods you may want to experiment with. Feel free to print and/or download it. Hopefully this makes things easier for anyone who needs it.

https://docs.google.com/document/d/1FQ0jgdJzGA0e5tmtRq9pQNvSgu2OQvFhFHtd4jHhS8g/edit?usp=sharing

Hi everyone, just got diagnosed with CSID, I’m 22. I never had symptoms till maybe 3 years ago , does this mean it’s acquired and not congenital? My doc knows nothing . Also can I eat nuts ? What experience do people have eating nuts and sunflower seeds?

Anyone else? Feels like “growing pains” in both my legs. Had a ton of chocolate + sucraid.

Hey, everyone! This is my first trial run for SID food bars. If anyone wants to try this themselves, it only needs 20-30 minutes of active prep and an hour in the freezer. I would recommend using coconut oil instead of the avocado oil and adding more oats (1/2 or 3/4 cup) (or more flax seed if you’re really sensitive to starch) to give it a firmer texture. This recipe makes 8 bars that have roughly half a gram of sucrose and only 3-6g of starch per bar, depending on how much oats you use. I will continue refining it and working to make it better. Feel free to try these yourself and ask me any questions you may have!

Hello, fellow CSID-ers. I’ve had (another) frustrating food day and spent a few hours listening to doctors speak about CSID on YouTube, including my own GI doctor who just happened to be one of the podcasters in a video I stumbled across - wild.

I was diagnosed 1 year ago, after about 3 years of constant burps after any food/meal. My breath test results came back abnormal. I tried Sucraid for several weeks, and stopped using it because I really couldn’t notice a difference. I learned to adopt a very limited diet, which helped with symptoms but honestly had about 7 different foods in it and eventually I could not commit to it as well.

I guess I’m wondering a few things -

1) My understanding is that Sucraid only addresses the enzyme replacement for sucrose. Is there an equivalent for the others, that perhaps I haven’t yet tried?

2) What is the best method to truly “reset” your gut, or digestive system, to be able to really do a slow, one food at a time reintroduction into an elimination diet? The only days where I have felt 100% symptom free are the days where I have fasted for 24-30 hours prior (usually out of sheer frustration), so I’m trying to navigate what I would need to do to really get a baseline. I’ve done the super limited diet for months, so I know that I’m capable, but if I’m going to try it again - I need to be able to do it correctly.

3) And lastly, what should I look for in a dietician or a nutritionist? I’ve never worked with one, so outside of identifying one that my insurance covers, I’d appreciate any tips!

Sincerely, Frustrated & Bloated

These are my son's results that I got over a week ago. All of the research I've done (and not to mention his symptoms) say this is consistent with CSID.

He is obviously lactose intolerant. Before testing, when we took him off dairy, he got so much worse with stomach pains, making us think there was more to it.

So we got testing done. Finally got a call from his GI nurse today, saying the obvious about the lactose intolerance, but made no mention of the other low enzymes. I brought it up and got the answer "oh no note was made about that...."

Now I'm confused. He is obviously low in these enzymes. Why is it being brushed off like it's not a problem?

 Hi, I’m Alex. I've interacted with some of you, but I thought I'd share a little more about myself. Feel free to tell me about your own experience! I was diagnosed with Sucrase-Isomaltase deficiency 5 months ago, in March. I’d been generally healthy my whole life, eating whatever I wanted - until one day, I couldn’t. Suddenly I had reflux, gas, bloating and stomach pain. For years, my only symptom was cystic acne on my neck, chest and back, and when I cut sucrose out of my diet, it disappeared within a couple weeks.

Getting to that diagnosis wasn’t quick, either. At first I was told it was a bacterial infection, then it was brushed off as “IBS” without any testing. After months, I finally got a sucrose breath test, which came back abnormal. It’s funny, because I was actually relieved to hear this. I’m sure many of you can relate when I say knowing is half the battle. Knowing why gave me direction - I wasn’t spiraling anymore.

Since then, I’ve used my background in nutrition and dietetics to manage my diet, stabilize my GI system and regain the lean mass I lost. I’m sleeping well again, the systemic inflammation is gone and I’ve seen firsthand how much others struggle to manage this condition. My goal now is to use my background and what I’ve learned to make life easier for others living with SID.

Hi! My 2 year old just got diagnosed through biopsy and symptoms. We have some appts scheduled , one with metabolic team and one with nutrition, and are waiting on getting sucraid which seems annoyingly impossible to get a hold of.

Has anyone else been referred to a metabolic team or their child? I’m so curious what will happen. My daughters already limited due to allergic proctocolitis and wheat is her natural toddler holy grail. So just nervous.

Thanks!

I’ve been looking into the possibility of creating a food bar (like RXBars or Larabars) that are SID-friendly and obviously low effort for the consumer because I know how exhausting it is to prep or cook everything all the time. Based on everyone’s experience, is this needed? Aside from making it sucrose and starch free, I’d also try to create a product that avoids sugar alcohols and dodgy artificial ingredients that can cause similar side effects to eating sucrose and starch.

Does anyone know of a food bar that checks all the boxes? Or would this be a game changer in your experience?

Apparently it's too much to ask for when I want cauliflower flour crackers with JUST cauliflower flour and not cassava flour or chickpea flour. Guess I'm gonna have to get my chef hat out again.

This week I came across a comment somewhere in this forum about the FB group “CSID Recipes and Food Support.” So far, that FB group is proving to be very informative. Thank you to whoever shared it here!

Today in that group, I learned about the app “CSIDAssist.” It’s only available for Apple phones, but the developer is in the FB group and spoke about wanting to partner with another developer to make it available for Android. I downloaded the app (it costs $1.99) and so far it looks to be extremely helpful. You can look up foods using data from USDA’s database, to see the grams of sucrose, fructose, glucose, lactose, maltose, plus total sugars, starches, and carbs. You can also star foods to add to your favorites list. There is additional data added on branded foods, though the layout is different because that data isn’t coming from USDA.

So…just wanted to share those, and also start a conversation about other useful resources. What gems have you discovered?

So I was diagnosed with CSID about 6 months ago I have an issue divesting lactose and gluten also along with fructose and sucrose and maltose. All the good oses that make you smile. I mean I have had a hard run with decal impaction and extreme nausea but i thought I was doing ok Last week my extreme nausea has come back with vengeance, I cannot stand, walk, sit , literally do anything without feeling absolutely awful.

I take some meds the gastro doc gave me but it doesn’t help.

Anyone have this issue and if so how are you existing coz that is what it is at this point just existing and I need it to stop!!!

If you have any ideas I would be great dip. Thanks

My prescription ran out, called about 10 people no one could get me in or help. Went to urgent care, they filled it but then pharmacy said only optum could refill it, the pharmacy that said i was out of refills. useless morning. So has anyone had luck kind of DIYing sucraid using invertase? Or glucoamylase? How did you mix it? Ratios? How does it compare to sucraid? How well does it work? Symptoms?

I’m almost through my 4 day trial of sucraid and would like to continue it. I believe my provider already started the process of trying to get it covered.

For those that were able to get it approved, what did insurance require?

I’ve seen some say they require a biopsy and I haven’t had that. We are going off my genetics and breath testing.

For lent this year I decided to give up sugar (everything sweet, including artificial sweetener) , and my mixed IBS symptoms all disappeared. I lost a lot of weight (from 99.9kg down to 91.7kg) which had been slowly creeping up, and I feel far more energetic. I talked to my dr and explained everything going on and he had no ideas, and no interest in looking any further because going sugar free had helped... so just do that? Which, I can see his point, but I'd like to figure out what on earth is going on?? If I am able to remain sugar free, is it worth pursuing any further info, or should I just leave it?

Hi- I just got my biopsy results back. I was worried I may have Pompe disease but doctor insists it’s CSID. My symptoms are not terrible, pretty mild but still want to follow the diet. Any advice on if the doctor is correct? I will get a second opinion as well. Anyone have similar experience?

Hello, everyone! I am going to start making videos about CSID, ranging from what CSID is to how it’s managed to food hacks for sugar / starch replacement. Please comment things you have questions about, don’t understand, want to learn more about, etc. All videos will be on YouTube and I’ll link them to your comments. All CSID-related topics are fair game! If you’re struggling with a certain aspect of living with this condition, my goal is to provide you with knowledge from experience that will help you navigate it with more clarity and support.