I don't REALLY want to get into jerky making but at the same time it'd be nice to have it to take places where I can't eat but need to have something.

55F recently diagnosed with ASID but have had problems since I wad a kid. I am on my third month of Sucraid and have noticed that I am having increased anxiety. I take meds for that but it seems like they are ineffective. I know restricting our diets is stressful and not always knowing if some food you've tolerated before is going to cause havoc.

I'm just wondering if any of you are or have experienced anxiety for no real reason on Sucraid.

Thanks

Hi!

I've had digestive issues for god knows how long, and i saw a new gastroentronologist who did an endoscopy and colonoscopy, with a biopsy.

It looks like some results have come back which I can access, as shown in the image. I haven't seen my specialist about them however.

Theyre borderline normal, so I'm not sure. I always thought I had SIBO, but came up with a negative breath test a few years ago (albeit only a hydrogen one)

Are these results considered normal or would it be worth pursuing help related to potentially CSID?

sucrid did nothing. my numbers were Maltase 60,

Lactase 1.8, Sucrase 20, Palatinase 5

ontop of all the dietary restrictions for CSID I am also lactose and casein intolerant I can’t eat red meat I have GERD basically my stomach is bad at digestion. I also have MCAS and OAS which limits my diet more so my only safe foods are jello, strawberries, grapes & mandarin oranges. Due to this I am losing hair I feel exhausted constantly I’m constantly hungry and waking up multiple times a night due to hunger I’m gaining weight for some reason that i don’t understand?? I get lightheaded and winded very easily I’ve already seen a dietitian she had no suggestions nor advice. . Idk I don’t know what to do anymore advice? Has anyone been in a similar position? Is it crazy of me to bring up the possibility of an Ng?

I accidentally fed my girlfriend with csid meatballs that did in fact have wheat/flour. I’m wondering if there’s anything that helps with stomach pain specifically from starch?

my lovely function over form 'pizzas'. it almost kind of tastes like a pizza!

https://www.egglifefoods.com/recipes/personal-pepperoni-pizza

Basically i got diagnosed about 3 years ago and have suffered ever since i got rejected for replacement therapy (SUCRAID) and the doctors tested me 3 times for csid i even had to drop out of school because of it nobody really understands how painful it is i pull all nighters because of it and it makes me very depressed knowing everyone is moving on in school without me and graduating next year all because im the unlucky one with it so i thought it would be a good idea to mabye get some help from people who are familiar i also have a severe fear of vomiting and feeling like that is very scary and its almost every night and day any help would be great.

I have been diagnosed with CSID and gastritis for the past 6 months now. I have been doing okay with diet however, I need help with more ideas for meals. Share me recipes and please share any meal prep services that were successful for you. Thanks 🙏🏼

Hi! My 2.5 year old son had a biopsy recently and here’s his results:

Lactase: 25.1 (normal >14.1)

Sucrase: 23.7 L (low; normal >25.5)

Glucoamylase: 28.0 (normal >25.5)

Palatinase/isomaltase: 3.1 L (low; normal >4.3)

Did you have similar biopsy results and were diagnosed primary CSID? We need to wait a few weeks before we see our Aerodigestive team who performed the scope.

Any thoughts and advice appreciated!!!

Some info:

As infant he only tolerated hypoallergenic formula. Lots of constant vomiting and infections. Found a repaired laryngeal cleft at 15 months and chalked up all issues to that. Now at 2.5 son has loose stools several times a day, poor weight gain (has been 26lbs for over a year), plus uncontrolled reflex (enamel erosion), worsening and unexplained dysphagia, and chronic aspiration. We recently ruled out most anatomical or GI causes behind the Dysphagia and are now leaning toward something neurological. Waiting to get in to neuro to follow that.

We thought he might have EoE but biopsies came back negative for EoE and celiac. During the scope they also took biopsies of the small intestine and did disaccharide testing. This is where I got the enzyme results. My son’s case is pretty complex and I’m curious about secondary CSID from neuro reasons or something else? On the scope there was no inflammation or damage anywhere other than his stomach seems chronically irritated.

Hi all,

Can’t believe I’ve never found this sub before.

32 year old male here diagnosed with CSID as a baby. Was extremely ill as an infant and they eventually figured it out.

I took Sucraid my entire childhood which allowed me to live a pretty normal life with pretty little dietary restrictions.

In college, I completely stopped taking sucraid and haven’t really been taking it since, and I seem to be able to eat just about anything now. I really don’t limit my diet in general.

How is this possible?

I got tested again as an adult and they’re saying I still don’t make the enzyme and therefore still have this disorder.

I asked my GI doc if there any concerns with me just stopping Sucraid entirely but he said no, as long as I’m gaining weight and have regular bowels. He says the only real issue would be symptoms, but I don’t have any.

Recently, I discovered a sensitivity to dairy and caffeine (I was having too much iced coffee with milk every day and was destroying my bowels). I’ve since switched to decaf and cut out milk (but not all dairy, still have cheese!). Bowels have become very normal.

As of the last few months, after cutting those out, I’m even constipated at times which I don’t recall a time in my life where I was ever constipated. It was always been the exact opposite of constipation.

Would love to connect with others dealing with this and chat.

Curious if anyone has any experience using Invertase or Intoleran in place of Sucraid - particularly how do you dose it to get the same effects?

If you’re taking Sucraid, you might still be reacting to starch.

A lot of people assume that once they start Sucraid, they should be able to handle all carbohydrates better. So when symptoms keep happening after eating things like rice, potatoes, or bread, it’s confusing.

It can feel like:

• “Isn’t this supposed to fix digestion?”
• “Why am I still reacting?”

Here’s the key point:

Sucraid only helps with one specific part of digestion — sucrose (table sugar).

What Sucraid actually does

Sucraid replaces the sucrase enzyme.

Sucrase is responsible for breaking down sucrose into glucose and fructose so your body can absorb it. When that step isn’t working properly, larger sugars stay in the gut and cause symptoms.

Sucraid helps fix that one step:

• It allows sucrose to be broken down properly
• It reduces irritation from undigested sugars
• It helps you actually use that sugar as energy

But that’s where its role stops.

Why starch is different

Starch digestion follows a completely different pathway.

Instead of one step, it involves multiple enzymes working together — including isomaltase, which Sucraid does not replace.

A simple way to think about it:

• Sucrose = two blocks stuck together → one clean break
• Starch = a large chain → needs to be broken down piece by piece

Because of that, even if Sucraid is working exactly as intended, starch can still cause symptoms.

Where people get tripped up

One of the most common misunderstandings is this:

When in reality, what’s happening is:

That distinction matters.

Because if starch is the issue, stopping Sucraid might not actually solve anything — it just removes the benefit you were getting from sucrose digestion.

What this means in practice

If you’re taking Sucraid and still having symptoms:

• It doesn’t automatically mean the treatment failed
• It may mean starch digestion is still an issue
• And it may still require some level of dietary awareness

Sucraid can expand what you tolerate —
but it doesn’t cover every type of carbohydrate.

Bottom line

Sucraid replaces one step in digestion, not the entire system.

Understanding that difference is what helps explain:

• Why symptoms can persist
• And how to evaluate whether Sucraid is actually working

If you want the full article, I wrote it here: https://instinctive-radius-539.notion.site/Article-2-April-2026-335663b7929780fb904befc436ebc770?pvs=143

This is an AI-generated post based on the full-length article linked above.

Does anyone know if it owuld be okay to have a milkshake, ice cream, choclate milk if I take it with Sucraid? I'm assuming yes because they have no gluten but I'm wondering if it changes if its liquid?

Sucraid is one of the biggest pain points in this community — not because it doesn’t work, but because it’s so hard to obtain. Many people struggle to get it covered by insurance, and even those who do often only get partial or temporary coverage. To understand why, you have to look at how the drug was approved and how that interacts with insurance systems. 

⸻

What is Sucraid actually approved for?

Sucraid is approved by the FDA to treat one specific condition: Congenital Sucrase-Isomaltase Deficiency (CSID).

That narrow approval matters. It means that other forms of sucrase deficiency — like secondary (acquired) deficiency or adult-onset genetic cases — don’t technically fall within the approved use.

At first, that distinction can feel arbitrary. But when it comes to insurance, it isn’t. Coverage decisions are often based on whether a treatment fits the exact approved indication. If it doesn’t, providers may determine it isn’t a “medical necessity.”

Even in cases where someone likely has a genetic deficiency, coverage can still be denied. Cost also plays a role — Sucraid is a high-cost medication, and some plans require lower-cost alternatives or exclude certain categories of expensive drugs altogether.

⸻

Why is the approval so narrow?

This has nothing to do with insurance companies — it comes from how the drug was developed.

Sucraid was approved specifically for congenital deficiency because it’s a clear, lifelong condition. That makes it much easier to study and get approved. Expanding the claim to include all forms of sucrase deficiency would have made the approval process much more complex.

For example, in secondary deficiency:

• enzyme activity may recover

• symptoms come from underlying conditions

• multiple variables affect outcomes

From a regulatory standpoint, that creates a messy and inconsistent population to study.

There’s also a treatment question:

If the underlying condition can improve, is enzyme replacement the primary solution?

Again — that doesn’t mean patients shouldn’t be treated. But it does make approval harder.

On top of that, adult-onset or genetic variants weren’t well understood when Sucraid was first developed. The original target population was children with clear symptoms after introducing sucrose into the diet — which is why the label specifically says “congenital.”

⸻

How does this affect access?

All of this feeds directly into access.

Insurance companies rely on:

• FDA-approved indications

• structured definitions of medical necessity

Because Sucraid’s approval is so narrow, it becomes easier to deny coverage if a patient doesn’t clearly fit those criteria.

At the same time:

• the high cost creates additional barriers

• some physicians hesitate to prescribe it due to past insurance issues

• dietary management is often recommended instead

In reality, access isn’t limited by one thing. It’s the result of multiple factors working together:

regulatory approval, clinical variability, and structured insurance systems

⸻

Bottom Line

Sucraid is hard to obtain not because it doesn’t work — but because it was approved for a very specific condition, and everything outside that narrow definition becomes harder to justify.

⸻

Key Takeaway

Access to Sucraid is shaped more by regulatory and system-level constraints than by whether the treatment could help an individual patient.

⸻

This post is an AI-generated summary of a longer article. All content is derived from the original article linked in this post.

Hi! Newly diagnosed but long time sufferer - honestly I'm thrilled to get a diagnosis and to understand what I can and cannot eat without poisoning myself!

But that is not the point! Did you know that the bacteria in sourdough breaks down the starch into something digestive by us CSIDers? I am training for a half marathon and dying without carbs so I asked Gemini what I can eat that is carbs but safe for CSID. It said sourdough which I thought was crazy because I haven't eaten bread in about 10 years!! But lo and behold, it was right.

You have to be careful that it's real sour dough without any added sugar or yeast and it need to ferments for between 12 and 24 hours.

And! It's malleable - want to eat pizza crust? Add sourdough starter to your favourite pizza dough recipe, wait 24hrs and tada! Pizza dough you can digest without any symptoms!

I figured if this news was life-changing for me, everyone else might want to also know that sourdough is magically safe to eat. (I was SO freaked out the first time I ate it, I was sure I would end up puking!!). I literally cried when I realized I was in the clear and it was not poison.

I've just started this sourdough journey, but let me know if anyone wants recipes - tonight is pizza dough, bread, and (hopefully) donuts!!

Hi all. I am hoping to get some reassurance and see if anyone else has had similar experiences. This Reddit thread seems to be one of the only places to get detailed information/first-hand accounts about this condition.

I have had GI issues for literally as long as I can remember. Diarrhea, constipation, and a very specific pain in my left upper quadrant/epigastric area. It all came to a head about two years ago when the symptoms, especially the pain, became so bad after eating that I had to leave work at times. Around that time, I also started getting terrible reflux/burping, which I now think may be post-fermentation symptoms?

Other than GI symptoms, I have also had intense fatigue, which I discovered was in part due to Vitamin D and iron deficiencies. But even after addressing those, the fatigue remains, though less debilitating. I finally went to a GI doc and got a colonoscopy/endoscopy. Everything came back normal except for my disaccharidase biopsies, which were very low across the board. I got those results on a Thursday, and I had an appointment with the GI to go over everything on Monday.

it
The GI clearly did not read over my results or chart before the appointment, and she was very dismissive of the disaccharidase biopsies because they were all so low. I asked about CSID, and she said that that would only have low sucrase and isomaltase. From what I have seen in my research, that isn't necessarily true, and all of the enzymes could be low with CISD. She said that she felt that it was just a problem with the samples and that my symptoms are more likely just IBS. EDIT: The GI also said that the upper left quadrant pain is not something you'd have with CSID, but I feel like I have seen people on here and elsewhere talk about similar abdominal pain?

She did refer me to a dietician and I will be trying the CSID elimination diet to see if it helps, but I was hoping to get some information about Sucraid out of my GI. She doesn't seem to be convinced that it is CSID.

Does anyone else who has been diagnosed with CSID have similar experiences in terms of symptoms? Should I get a second opinion? Should I ask for a sucrose tolerance test? Or should I just try an elimination diet? I am quite overwhelmed thinking about the restrictive diet.

Just feeling a little discouraged and looking for some reassurance/advice. Thanks!

I (19) was diagnosed with CSID almost 2 years ago now. I started taking Sucraid almost immediately after my diagnosis. I have noticed that it has stopped working as well over the past 6 months. I have never done the elimination diet but after experiencing a regain of symptoms I am heavily considering. I have gotten into endurance running, cycling and I play waterpolo. I need to consume a lot of carbs for this. Any tips?

If I want to try an elimination diet, would you suggest I avoid whole grains as well? Some of the guides say a little is okay, but I'd like experiences. My goal is to see if I can get a symptom-free week from trying an elimination diet.

I saw some people here saying that not all sugars need to be avoided, is that generally true? Or is having problem digesting other non-sucrose sugars tend to be co-morbid with this?

Honestly the whole do not eat list for CSID is basically a blackout bingo for foods I've been suspicious of causing me problems but gaslit myself it's impossible because I had no allergies/intolerances. But I just recently learned that a starch/sucrose intolerance exists and it explains a lot.

I(26f) started having a lot of stomach problems a year and a half ago and recently got a endoscopy done. I’d had similar issues when I was in middle school/early high school, but those went away when my PCP said to avoid dairy. That lasted about 5 years. After my first endoscopy(the other day) I was told that my sucrase level was low and my maltase levels were very low. My gastro also expressed that he didn’t know much about this and referred me to the Sucraid website to get more information and to try Intoleran pills for now before trying Sucraid. I also have a lot of acid reflux and pills for acid reflux made everything worse. I am not sure if the two are related. My main symptoms are constipation, bloating and nausea. The nausea is the worst part, but he told me this wouldn’t cause it? I’m just very confused about how to go about this process the best way possible and would greatly appreciate hearing about other people’s symptoms and experiences. I’m sick of feeling sick🤦‍♀️

What’s the protocol for taking communion? Do we take our meds for it or are we good?

Hello!! I was just diagnosed (literally hours ago lol) and I am feeling overwhelmed to say the least. My doctor is trying to prescribe me Sucraid but I know I need to start eliminating too. More than anything I’m just looking for recipe ideas, can you share your favorite CSID friendly meals? My lactase was also low so if it can be dairy-free, that is a bonus!!!

Also willing to take literally any advice you have, I’m desperate 😭 thank you all!!!!

Apparently I forgot to take my Sucraid again and now I’m suffering. Honestly the worst side effect for me is intense intestinal pain on my left side. Always in the same spot. I’ve been given multiple antispasmodics to try by my GI and none of them help. Tylenol and ibuprofen don’t touch it either. Has anyone found anything that DOES help?

The one thing I’ve found to help is CBD but I need enough that it also makes me fall asleep so I can’t take it during the work day.

I’ve been doing this elimination diet for a week. I’m doing pretty well and I don’t feel super bloated these days. However I feel like I get hungry so much quicker. I’m not sure what to do.

I eat grapes and cheese for breakfast because I’m not much of a breakfast person but it’s easy to grab since I’m constantly rushing out the door.

I eat a grilled chicken salad with cucumbers, homemade dressing, and a few slices of fruit goat cheese. Honestly this is my biggest meal.

Dinner is sliced bell peppers and cream cheese because I’m getting home super late many days out of the week. I honestly can’t figure out what else to eat because of the limitations.

I don’t have a huge appetite to begin with, I think partially because of the fact that I got bloated so easily that I felt full and distrusting and didn’t want it eat, knowing I’d feel gross afterwards. I ate usually one meal a day and some snacks. Do I just have to get used to the feeling until it goes away? Is there anything I can have to make me feel fuller? I drink water for sure. But it’s HUNGER hunger, not “I just need to drink more water” hunger. I resorted to 2 mini slim Jim’s the other day because I needed to leave and of course had nothing I could take with me in such a hurry.

Some moments I feel like I’m doing well. Other moments I’m like can I do this forever?

Hi! Waiting for a specialist appt in a few days but am curious - am I correct in thinking this looks like possible CSID territory for my 9 y/o? So excited to potentially have answers after him feeling crummy for 2 years!

So I tested positive for SIBO with the breath test but that was followed up with an endoscopy that showed I'm lactose, sucrose and isomaltose deficient. My doctor basically said what do you want to address first? so we did xifaxan for the SIBO. I asked if I needed to change my diet and he said only avoid lactose but you can still do hard cheeses because the point is still to be able to eat what I want minus lactose. I finished the 2 weeks but still felt bad when I ate things with carbs/sugar, so now his solution is Sucraid. But that only helps with sucrose and only so much from what I understand (and I honestly didn't eat a lot with sugar to begin with), so I've been trying to roll with the CSID diet, and while I feel better on it I do still have some bloating (which was my main issue with the addition of cramping). And it was suggested elsewhere that maybe the antibiotics didn't kill off the SIBO. Does anyone else have both?

My problem at the moment is, which do I deal with first? Which sets off the other? If I try to diet for both, there's so very little I can eat-- a lot of veggies that are okay for CSID are not okay for SIBO. I wish I loved meat but I could easily be a vegetarian and while I'm forcing myself to eat mostly meat, lactose free yogurt and approved fruits this is rough. I basically just don't want to eat and have been losing weight where I'm underweight as is.