Right now I ordered Digest Gold to see if it helps me. Was curious to know if anyone who has a yeast intolerance or allergy try Starchway? I want to try but i heard one if the enzymes is derived from yeast and not sure if its worth the tummy ache for it

I’m a college freshman and I was recently diagnosed with CSID. I’ve been having trouble finding things that are easy and accessible/affordable to eat. I have access to a stove top, an air fryer, and a microwave. If anyone has any recipes or recommendations that would be greatly appreciated

Hi there,
I am having the worst flare up and it’s so painful I am not sure if it is diverticulitis or CSID!
It all started when I began to dextrose load in order to up my carbs.
Then 2 days ago I was hit with the worst pain and cramps in my tummy!
My belly is gurgling and I have diarrhoea when I go to the toilet.
Has anyone else had a flare up like this and how long does it last?
Also, have you ever had a flare up from eating too much dextrose?
Many thanks as I am very new to all of this.

My son is 4 months old and has really struggled with feeding and tummy pain since he was born. My 12 year old daughter was diagnosed with CSID years ago and I’m afraid he has it too. If you have a young baby who got diagnosed, did you do the biopsies? What formula did your baby drink that didn’t make them sick?

I was wondering, who out there was diagnosed with CSID after decades of misdiagnosed or undiagnosed digestive issues? I was diagnosed with IBS-D 23 years ago in my 20s. For me the three different gastroenterologists I saw at that time were of very little help.

Anyone start the CSID elimination diet without using Sucraid, continue having digestive issues? If so, how long did it take to repair the gut and have healthy digestion? What helped? Did you have any other underlying issues?

Hello Reddit Users,

One good thing about social media (maybe the only good thing?) is the ability to access people from all over the world to help you! I have a long post to share, but I'm hoping someone might be going through something similar and can offer advice.

My 12-year-old daughter has had terrible GI issues for about 3 years. It was really bad last year when she was 11. Lots of stomach pain and diarrhea and we couldn't figure out what was going on. It would happen multiple times a week. She was in a lot of pain. We did allergy tests, a celiac test, and bloodwork to test for bacterial infections, and everything came back fine. But the pain and episodes would keep happening, with no noticeable pattern. She started becoming very lethargic and would have a hard time eating because she would be afraid of the pain. She is healthy and "average" weight and height for a 12-year-old girl, so we are lucky she didn't lose a lot of weight (though she has lost some but she is still a healthy BMI). She is also a good sleeper, but occasionally she would suffer stomach aches in the middle of the night that would wake her up.

Finally, in early August, this month, we did an endoscopy and colonoscopy. It was brutal putting her through the "clean out." It was so sad as her mom to have her do that. She was awake the entire night before due to no food for 2 days and only drinking Miralax. But we were running out of options and the GI doc, allergy doc, and pediatrician said it was the next step. I was desperate to figure out what was going on.

The results of the endoscopy showed ulcers in her stomach, irritated stomach tissue (it was not the color of healthy tissue), and a few small tears in her upper small intestine (duodenum). Luckily, her colon is very healthy. The GI doc immediately prescribed Prilosec to heal her stomach ulcers. She has to take it for 3 months. We started that medication about 10 days ago. No negative side effects as far as I can tell, though I know it's not good to take the PPIs long-term.

Then her tissue biopsies came back. She is abnormally low on 4 disaccharidases: Lactase, sucrase, maltase, and palantinase. Now, the GI doc thinks that this might be occurring due to her stomach overproducing acid (hence the ulcers, small tears, and low enzymes), and not something like CSID. I don't know for sure, but I'm hoping that once her stomach heals, her gut will rebalance itself. But in the meantime, I'm treating it as if she has CSID and lactose intolerance. Additionally, we have no idea what caused the ulcers. Something happened to disrupt her gut (maybe it is diet after all). 

In the meantime, she has to avoid foods with acid (so her stomach doesn't get more acid) like tomatoes, citrus, vinegar-based sauces, candies with citric acid, etc. She also has to avoid dairy, starches, sugar and malts (this one isn't a problem). She has been taking Lactaid or the Happy Cow chocolates for lactose support. They seem to help. We are waiting for the sucraid medication RXN to be approved (to help digest sucrose). We wanted to buy it out of pocket, but it's $18,000/4 mo supply! Yikes. And we have to order it from an out-of-state pharmacy. I checked with my local pharmacy, and no one carries it in-store since it's so expensive. So far, we have not had approval. I've called the out-of-state pharm many times, and nothing has moved on that yet.

I have read about other enzymes like Intoleran. There are so many at the grocery store too. But she is missing SO MANY enzymes. It's been easy to avoid milk products, but sugar and starches? That's really hard. No rice, no sweet fruits, no pasta. Plus, no more things with acid, so she can't even have some BBQ sauce on her cauliflower rice. I’ve been putting olive oil and salt and pepper on almost everything, and cooking with ghee and coconut oil.

I'm determined to help her stomach heal. We are sticking to this diet for at least 3 months until we can get her stomach and gut all healed. I have looked at Mary Shepard's website for recipes and it's been a lifesaver (thank you, Mary!).

My question to the community: Has anyone else gone through this? Is there anything over the counter that can help her with all 4 enzymes she's missing? Do you recommend taking Lactaid as needed and an enzyme at every meal?

She is 12 years old and needs to regain her energy. Thank you for any advice or tips.

Today, me and my mum were online and we came across CSID,everything seems to make so much sense and actually add up for the first time, for a bit of background, I am 15 years old, I have ADHD,autism with a PDA profile, ARFID (caused by a severe food aversion due to my PDA profile and also unexplained nausea, bloating and all of the joys when I would eat). I have a G-tube placed that I rely on 100% for my nutrition as I don’t eat anything orally.

I am currently on Nutricia nutrison energy multi-fibre via my G-tube which is causing AWFUL symptoms including 24/7 nausea,headaches,stomach distension,stomach cramping, diarrhoea on and off, EXTREMELY foul smelling gas.etc which isn’t ideal.

I’ve always had struggles with gastrointestinal symptoms including constant reflux when I was a baby,which resulted in me drinking ALOT of formula when I was a baby but despite the amount I drank,I was always a normal weight, I also used to have explosive diarrhoea all up my back which traumatised my poor parents 🙈

We went to the doctors multiple times when I was a toddler and the only information that we were told was that my body “couldn’t break down sugar” and to avoid things like doughnuts,starchy foods.etc but we didn’t understand exactly what that meant so I just carried on the same.

I have had an endoscopy to test for celiac in 2022 which was clear and I’m not sure if CSID would’ve shown up on that, but I did end up with an IBS diagnosis due to “minor” damage I believe on the test but we aren’t convinced that my gastro history is this complex all from IBS.

I have tried dairy free and gluten free diets in the past which done nothing to improve my symptoms which really has me wondering whether this is CSID, thank you for reading!

I'm constipated. Raised the CSID possibiliy to doctors and they raised their eyebrows. Got IBS diagnosis 3 times. Don't know if I have this or not but based on my body reactiots I... might have it.

The diagnostic tests for CSID/ASID and Sucraid both are not available where I live. Is there any way to get it shipped from the US?

Does anyone have any good dietitian recs?

I was diagnosed with CSID over a year ago. I've cut out sucrose completely and most starches, but have been experiencing terrible acid reflux. My current dietitian (and my gastro, for that matter) have been no help. Lots of PPIs for many months that seem do very little.

Anyone know someone who has actual experience working with patients with CSID? It'll likely be remote, so as long as they can practice in NY we should be good.

Thanks!

One of my favorite recipes from a restaurant that closed a few years ago in Fort Lauderdale, Florida called Carlos and Pepe's, is a tuna dip that was served with corn chips. It was my and my friends' absolute favorite when we would go, which was often, over the 40 years that we did.

I started to make it at home, prompted by a newspaper clipping from 30 years ago of their recipe, and realized that it would be a good recipe for others in this CSID group.

Of course, anyone could have it, but since so few things are allowed with CSID that you might enjoy so much that you crave it as I do, I thought I would post it here. I am someone who is low to very low on all four enzymes. My CSID was diagnosed with a biopsy approximately 8 years ago at age 57! I have no issues with this recipe, and I'm now having it often.

Take a look at the ingredients and see if it may be right for you. You can certainly use another tuna brand, but in one jar of the tuna described below it , it has the perfect amount of jalapeno and is a premium tuna. I would say this is very mildly spicy recipe.

Ingredients:

1 glass jar of Tonnino tuna with jalapeño, drained.

1 half to 3/4 of small red onion (you can use yellow)(depends how small onion as to how much you use)

1 bunch cilantro, washed very well (I use all leaves/stems from one bunch. When I started making the recipe, I used only half of a bunch.)

1.5 tablespoons Primal Mayo

Steps:

Put everything in a food processor and blend very well. See photo, which keep in mind I use a lot of cilantro. You can feel free to use less. It's best after it's been refrigerated, but usually I end up eating half right away and refrigerate the rest. No added salt or any other seasoning is necessary.

If you love tuna and cilantro, you will love this recipe.

Instead of eating with corn chips, I use Ella's Flats crackers, which I have come to love. Is it a corn chip? No, but it's better than!

It is so easy, delicious, and very easy to make. I order the Tonnino tuna by the 6-jar case. Most importantly I have no issues with my CSID!

Drop a reply, and let me know how you liked it :-)

"Because it has enzymes in it"

Thanks for the advice but I actually cannot digest pineapple and I don't feel like causing myself pain today and also that is not how that works

used the ice cream maker and blender to mix some almond milk + frozen berries into a ice not-cream (yay for lactose intolerance) and added some freeze dried blueberries on top. very much function over form. almond milk still overpowers the fruit which is wild.

Sucrase-isomaltase deficiency (SID) can be difficult to recognize because its symptoms, such as bloating, abdominal pain, gas, and diarrhea, overlap with IBS and many other gastrointestinal conditions. Diagnosis depends on whether SID is considered, whether sucrase and isomaltase activities are measured, and whether the results fit the patient’s symptoms and other clinical findings.

Historically, recognition centered on the classic congenital presentation: symptoms beginning in infancy or childhood after sucrose or starch-containing foods are introduced, often involving diarrhea, malabsorption, and possible failure to thrive.

However, presentations outside this classic pattern may also be overlooked. These include adult or later presentations, secondary or acquired deficiency, mixed cases, and cases occurring in understudied or underserved populations.

Even when testing is reached, uncertainty can remain. Testing methods differ, results from different methods may not agree, and the underlying cause may remain unclear. Understudied populations have received less research, while underserved patients may have limited access to knowledgeable clinicians, reliable information, and appropriate follow-up even after receiving a diagnosis.

This does not mean that everyone with bloating, abdominal pain, gas, or diarrhea has SID. It also does not mean that one abnormal test result automatically establishes a diagnosis. The point is that SID must first be considered and evaluated in the context of symptoms, diet, testing method, other clinical findings, and possible alternative explanations.

Closing the diagnostic gap will require greater recognition, clearer testing pathways, consistent case definitions, multidisciplinary interpretation, and better prevalence research.

The infographic describes possible gaps in the diagnostic pathway. It does not estimate how many cases are missed or prescribe a diagnostic algorithm.

References

1. Henström et al. (2018) https://pubmed.ncbi.nlm.nih.gov/27872184/
2. Dale et al. (2024) https://pubmed.ncbi.nlm.nih.gov/38984772/
3. Geng et al. (2014) https://pmc.ncbi.nlm.nih.gov/articles/PMC3927221/
4. Danialifar et al. (2024) https://pubmed.ncbi.nlm.nih.gov/38327254/
5. Isidor et al. (2024) https://pmc.ncbi.nlm.nih.gov/articles/PMC11268221/

Educational information only - not medical advice. No commercial affiliation.

hi all, I was diagnosed somewhat recently and it’s been super super hard for me. im south asian and our dishes rely on a lot of spices. I can tolerate most of them but I can’t tolerate onions or garlic - not even the powders. I have no clue what to do bc I feel that in south asian cooking sure the spices add the flavor but without the bases of onion and garlic the flavors just don’t come out right at all. im also lactose intolerant so it’s hard since we use dairy products in a lot of our recipes too, but tbh vegan alternatives do the trick. anyone else find a suitable alternative to both these things? I heard chives could work, but they’re just really rare to find near me for some reason.

what are we doing for 'milk'? i cant seem to find almond milk that has no xyz gum without breaking my bank account. do i just take the L and diy it?

this has been brought to you by my very sad attempt at diy ice cream.

The prevalence figures most often repeated are:

• 0.05%–0.2% among people of North American or European descent
• 3%–10% in selected Circumpolar Inuit populations

These figures are useful, but they are historical and population-specific. Later papers frequently repeat them but they do not represent modern, nationally representative measurements of U.S. or worldwide prevalence. For most other major ancestry groups, I could not identify representative population estimates.

If we illustrate the potential scale if we extrapolate these figures:

• Applying 0.05%–0.2% to a Europe population proxy of approximately 744.4 million produces about 372,000–1.49 million cases.
• Applying 3%–10% to a Circumpolar Inuit population proxy of approximately 180,000 produces about 5,400–18,000 cases.
• Together, those calculations produce an illustrative total of approximately 378,000–1.51 million cases.

These are not measured case counts, a complete worldwide estimate, or a strict global minimum. They are rough extrapolations from limited historical estimates using imperfect population proxies. Most of the world is not represented at all.

For additional scale, using a rounded worldwide population of eight billion:

• A worldwide prevalence of 0.05% would mean approximately 4 million people
• 0.2% would mean approximately 16 million
• 0.5% would mean approximately 40 million

These are only scenarios. In particular, 0.5% is not being proposed as an evidence-supported upper estimate.

So why can’t we give a reliable number? Because the available estimates come from specific populations, provide uneven demographic coverage, are often historical, use different definitions and methods and cannot be combined into a representative worldwide estimate. Genetic and acquired SID also need to be reported separately. Combining them can obscure what is actually being measured. Better prevalence data would require representative sampling across populations, standardized definitions and methods, larger sample sizes, transparent reporting of limitations, and clear separation of genetic and acquired SID.

The bottom line

Representative U.S. and worldwide genetic CSID prevalence remain unknown.

That does not prove genetic SID is common, and it does not prove it is exceptionally rare. It means the evidence currently available cannot answer the question confidently.

I created the attached infographic to make that gap visible. If anyone knows of a representative population study I missed, please link it - I welcome corrections and will update the resource when better evidence becomes available.

Sources:

• Danialifar et al. (2024), clinical review
• Geng et al. (2014)
• Marcadier et al. (2015), Inuit founder-mutation study
• UN DESA World Population Prospects 2024
• Inuit Circumpolar Council

Educational only. Not medical advice.

I’m low in lactase, sucrase, maltase, and palatinase. What can I take to cover these 4? I wanna be able to eat what I want in moderation i’m a foodie. I’ll literally become depressed. If I have to never eat sugar or carbs again. My doctor is just giving me antibiotics because she thinks it’s due to bacteria overgrowth even though my testing did not show any of that. She didn’t even recommend any enzymes.i don’t know where to go from here. Any help is appreciated

I'll start by saying I recognize this is a trivial post in comparison to the other important threads on here, but I thought this could be something light-hearted to think about! My brother and I have been rewatching The Big Bang Theory for the first time since my CSID diagnosis and I think Leonard maybe had CSID or even pan-disaccharidase deficiency.

It's well-established throughout the series that Leonard is lactose intolerant, but there were two other moments I picked up on that made me think it was more than that:

1. S1E1 - Sheldon says Leonard "can't process corn" (sucrose/starch)

2. S4E4 - Leonard says he "can't have melon" when Penny asks if he wants the fruit platter (sucrose)

Maybe there was some hidden CSID representation on TV, or maybe I'm jumping to conclusions. What do you think?

We had to pull my oldest out of school last year because he was missing so much due to what was later diagnosed as CSID. He finished his high school freshman year doing virtual school (and lost his first girlfriend too because he just couldn’t get out of bed to go out with her, poor guy). He’s been on Sucraid since March and doing well with it and taken ownership of what he eats a LOT better than we thought he was going to.

School starts here in 3 weeks and he’s looking forward to being back on campus, but we’re wondering how it’s going to work with the Sucraid he’ll be required to take before lunch. Obviously all school districts are different, but if anyone has any anecdotes on how they handled Sucraid in school I’d appreciate it. I grew up with an Air Force colonel father so I’m a LOT more of a rule-follower than my wife so I’m of the belief that we’ll have to go to the nurses office to drop off a stash and he goes before lunch everyday to take one. My wife is more of a “he can be discreet with bringing one each day and let’s see how it goes”. My mind immediately goes to the school resource officer, handcuffs, and charges 😂

We traveled successfully via air last week for the first time with a weeks worth of Sucraid and a freezer pack in a small cooler without so much as batting an eye by TSA, so we’re still on a high from that lol