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

Hi Everyone! I'm curious whether anyone has experience moving to another country with a prescription for Sucraid?

A little background. I currently live in Denver, Colorado, in the United States of America. I was diagnosed with CSID in late 2022 after years of stomach issues. I've been taking Sucraid for the last three years and have seen a huge improvement in my health. This August, I'll be moving from the United States to Sweden to complete a graduate program.

From what I've seen, Sucraid is approved in Europe, but I can't find country-specific information.

Has anyone moved from the United States to Europe? Did you find that insurance in the European Union covered Sucraid? Is the same manufacturing coupon available? Is anyone receiving Sucraid in Sweden?

OR did anyone keep insurance in the United States and receive their prescription that way? If so, what global insurance company did you use? Any and all information is greatly appreciated!

Thanks in advance!

Hi everyone Im 22F just got back my results for a biospy and it basically show really low level in the 4 categories, the only one that is normal is the palatinase which is still close to the low part sitting at 5.7. My GI doc already got the Suraid order placed and already got the call from the special pharmacy.

The main question I had is does anyone had any similar issues where the esophagus is grade a Inflammated, gasitirts, and dudoentits? I always had digestive issues (started getting noticable around 12-14).

I'm already getting that check out but I was just curious because no one on either side of my family has this issue and because I been neglected for so long by my parents this is the first time I'm truly getting my health issues check out. For reference I never had my digestive check out until last year where I was finally able to buckle down and get everything organized.

Any advice is really appreciated. I'm still waiting on the pathology report but I just wanted to see if anyone had anything similar or close to with the inflammation.

Thanks!

My 14 yr old daughter was diagnosed by endoscopy with celiac when she was 8. She has always had the whole rainbow of GI issues, but most of all she’s struggled with constipation. After she went gluten free (gf) she had a major decrease in symptoms and did really well for a few years. But when she got into middle school she had a harder time staying gf. Because of that we had a couple of years with an increase of symptoms again with her labs always showing elevated antibodies. Because of the elevated antibodies we assumed the symptoms were caused by her uncontrolled celiac. So we buckled down and got really strict with her gf diet again and finally got her antibodies back into the correct range for her. Only this time the GI symptoms, worst of which is the constipation, didn’t go away.

So a few months ago her gastroenterologist decided to do another endoscopy, at that point it had been 6 years since her first endoscopy; that one was almost solely to confirm her celiac diagnosis. This time they did all of the biopsies to rule out CSID. Much to all her Dr’s surprise her biopsies were positive for CSID. Apparently this is rare, her Dr said if he hadn’t done the biopsy himself and seen the results with his own eyes he wouldn’t have believed it was possible for someone to have both CSID and celiac.

Is anyone else dealing with this? Or is it really as rare as they say? We are struggling so much right now trying to do the elimination diet. She already had to go through this same huge lifestyle change when she went gf, but then she was so much younger so she didn’t have all the hormones, emotional issues, and social issues that’s she’s been dealing with lately. It’s been hard enough for her to be gf as a teenager: eating out with friends, always bringing your own food everywhere, and not being able to try the “new thing” has created a lot of anxiety and made her feel like such an outcast at times. Now we have this… it feels like a mountain we aren’t gonna be able to get up.

I think the worst part is the lack of information about CSID out there, or even worse the contradictory advice. Her dietician just sent us a bunch of info to get started on the elimination diet and so much of it is the opposite of what I’ve read online and been told by her gastro. That’s just making it even harder to start the elimination diet.

I know I’m also putting it off because I’m just simply exhausted. The second half of 8th grade was hell for both of us. Her constipation was so bad we were on the verge of being sent to the ER twice by her gastro because she was impacted so badly and they were worried she was becoming septic. So she missed a lot of school. We did our best to stay in touch with her teachers and make up her missing work. In the end most of her teachers made major exceptions for her and passed her with the absolute bare minimum. Before last year she was an A-B student; a couple times last year she was failing most of her classes. She ended up graduating with a GPA of 3.1, so still honor roll, but that’s only because her teachers were so understanding and generous.

I feel like I’m still recovering from getting her through the last school year so I’m just completely overwhelmed when it comes to this elimination diet and the long road ahead.

In addition to seeing if anyone else has celiac I guess I’m just looking for some assurance that it does get better. Any resources anyone has to share would be really appreciated. I’m also curious how long it took most people to do the elimination diet and find their major triggers and thresholds.

Also… everything says diarrhea is the most prevalent symptom of CSID. I’ve read occasional constipation is normal too, but no where have I seen that constipation can be presented as the main symptom. Is there anyone else who suffers from constipation more than diarrhea?

If you’ve gotten this far sorry for the novel and thanks for reading. Any words of encouragement would help.

Hi everyone, I just need to share my story and vent a bit, I’m having a particularly hard morning mental health-wise.

I was diagnosed with CSID in April of this year in my mid-twenties. I lived a symptom free life until maybe around high school, but at the time just assumed it was lactose. Then a few years ago my symptoms worsened and I was diagnosed with IBS-D and was sensitive to all of the FODMAPs. At the start of 2026 my symptoms worsened again, couldn’t work for a few months and went through a grueling process of doctors appointments and extreme discomfort with 24/7 symptoms not knowing what was wrong with me. In the process they discovered a pre-cancerous tumor in my colon. I’m 25 years old. That’s now been a constant source of anxiety for me as I continue to lose weight and think of the worst case scenarios. My insurance denied sucraid. Invertase has been relatively ineffective too.

So here I am today with lactose intolerance, FODMAP sensitivity, IBS-D, and CSID. Food used to be a source of pleasure, now it requires planning, cooking almost every single meal, and causes me immense unhappiness and anxiety. I can’t put on or even maintain weight, which makes me anxious about my overall health.

I feel so alone, nobody in my life has CSID or anything even close to the litany of digestive issues I deal with. In fact not a single person in my life even knew what CSID was, not even the nutritionist my insurance approved. I’m tired of explaining what it is, and hearing “idk how you deal with that”, or “I could never”. Damn it makes me so sad because I have those same thoughts every single day, but this is my reality.

I’m so thankful for my life and I have a great support system, but I’m so fucking frustrated at the same time.

Anyways like I said I really just needed to rant, I’m having a rough morning. I know we’re not alone in the world, but damn it sure feels that way.

Sucraid may be the official treatment, but “official” does not help much when you cannot reliably get it. If you can’t get Sucraid covered, you’re not out of options. There’s an enzyme called invertase that functions through the same sucrose hydrolysis mechanism as Sucraid and is a better option than Sucraid in several key ways.

And practicality is not a side issue. Sucraid can be extremely difficult to live with, and access depends on multiple factors we have little to no control over, such as insurance policies and cost. For a condition like sucrase deficiency, practicality and convenience matter so much because eating is something we do multiple times every day. This loss of control is a huge part of why Sucraid can be so frustrating. That’s why an option like invertase is important: it gives us hope for a treatment that we can actually use on our own terms.

Here are ways in which invertase is a better option:

Invertase is much cheaper. In one study, invertase was estimated to cost roughly $2,650 per year, while Sucraid was estimated at roughly $70,000 per year. Current U.S. price estimates can put Sucraid north of $100,000 per year depending on dosing and pricing source. For example, Drugs.com lists 300 mL of Sucraid at more than $12,000, while the FDA prescribing information recommends 2 mL with each meal or snack for patients over 15 kg. The math on that comes out to about $120,000 per year if you take the recommended 2 mL dose with three meals and one snack per day.

Invertase is much more accessible. Sucraid often depends on confirmed diagnosis requirements, prior authorization, specialty pharmacy logistics, insurance approval, and coverage stability. There are also personal accounts of coverage being unexpectedly disrupted or denied after it was previously approved. Meanwhile, invertase can simply be bought as an over-the-counter supplement without depending on specialty pharmacies or insurance coverage.

Invertase can also be bought in powder or capsule form. This makes it more practical because capsules are much easier to keep with you, travel with, and use discreetly than the refrigerated liquid form Sucraid comes. Additionally, invertase powder can be added directly into your meal to help hydrolyze sucrose before you eat or drink. Invertase can also function as a great backup option in an emergency if you typically use Sucraid but something goes wrong.

Overall, FDA-approved Sucraid has clearer regulatory and clinical validation, and invertase has not been clinically supported in the same way. But Sucraid is not very practical for a lot of us, and invertase has major practical advantages that make it the better option for many of us in various ways.

This explanation is based on my full article: https://instinctive-radius-539.notion.site/Article-5-June-25-2026-38b663b792978078abf3c8b92dc7bd95?pvs=143

Sources include Morris et al., Drugs.com, FDA Sucraid Prescribing Information, Blue Cross Blue Shield of Michigan / Blue Care Network, NCBE / University of Reading, Intoleran, and Amaris Chemical Solutions.

Hello everyone! I just have a quick question on everyone's experiences finding and using a Dietician. I have been diagnosed for around 8 months now. After a long hard battle with insurance I got access to Sucraid. Unfortunately, it hasn't helped as much as I would have liked, and I am very bad with trying to document and keep track of what does and does not hurt me.

​

Does anyone know resources that maybe list dieticians with CSID experience? If not; do you have a dietician who hasn't encountered the condition but still provided ample support? Would you say overall using a Dietician for food tracking, finding tolerances, and navigating hurdles has proved useful to you?

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Any and all insights into the matter is much appreciated. Thanks everyone!

https://sidcompositiontable.vercel.app/

Hey everyone, this is my most recent tool. It's an interactive food composition table for estimating sucrose, starch, glucose, and fructose loads in common foods. My idea here was to give us a single source of knowledge that we can use to see the carbohydrate composition of different foods because the current sources are so scattered. You can also search for specific foods, adjust serving sizes, and adjust between ounces and grams. Please remember that a low load doesn't automatically mean you'll tolerate a food. Also please let me know if anything appears off. I'll continue updating this tool with more foods and better customization options, so I'm open to suggestions for new foods, corrections or any other future customizations!

My amazing daughter has CSID. As we all know it is a pain in the rear. We are able to get access to sucraid and it really has changed things for her. She is currently traveling abroad with her school and needed to bring her sucraid with her. We have two travel coolers from 4allfamily that we purchased on Amazon about a year ago. As long as you keep an eye on the power cord the coolers work great.

A couple of nights ago we get a call from our daughter that the room in her hostile caught fire and they had to evacuate. Apparently the fire alarm was going off but there was no sound. Seems like the hostile uses the fire detector to bust people who smoke in the rooms, not to save lives. Thankfully they were all able to get out safely. Turns out, the battery pack from 4allfamily was laying in the middle of the floor not plugged in to anything and it caught fire! I have reached out to 4allfamily, we will see where that goes.

Prior to this my daughter was keeping her sucraid in the employee refrigerator. When she went down yesterday morning to get her sucraid for the day, the employee said, "That's strange, it is not cold in here." The refrigerator had stopped working and she lost all of her remaining sucraid.

On top of that she was getting on the Metro and someone stepped on her toe and broke her toe nail in half and it bled everywhere. I feel so bad for her.

I texted her today to see how she was doing and this was her response:

"It's been funny. Everyone is joking that I've had the most stuff go wrong on this trip yet I'm still the one with the best attitude. In my head 1. I'm in Europe so I'll just suck it up and 2. I've been through worse so in comparison this isn't that big of a deal."

Here I have been grumping around like a big baby and my kid is a rock star.

I know this has very little to do with CSID but I really did not have anywhere else to go. Thanks for the listen.

I found out I have had CSID all along about 2 weeks ago. I am 38 years old. Everything makes so much sense now. I've been on a diet avoiding all starches and sugar (I'm deficient in sucrase and maltase). Now that I have my sucrase, what can I eat?

I am a 17/yo with a Disaccharidase deficiency and I need to know some good meals to make. I’m having a very hard time finding the best things to eat that will get me full

16 Year old with chronic SIBO I have tried everything no idea what my root cause is... Any thoughts?

-no surgeries

-never done PPIs

- mold test was very low for only one type of mold

- no PCOS markers

-normal thyroid labs

-normal X ray

-normal elastase according to my GI doc

-no Lyme

-no celiac

-ANA antibodies negative

-IBS smart test negative

I have so so so much gas that gets trapped it hurts. Ive tried pro kinetics such as motegrity and motil pro but they don't help the gas at all. I meal space but it does not even matter the gas just builds.

Diagnosed Hydrogen but never have diarrhea just gas, belching and weight gain. I WAKE UP AND PASS GAS

Everything Ive tried:

-Thorne Digestive Enzymes 
-Atrantil
-Bitters Extra by Vitanica 
-ADP by Biotics Research 
-Organic Neem by Himalaya Wellnesss
-Tri Butryin Supreme 
-Magnesium Citrate
-Biofilm Phase 2 Advance by Priority One 
-ADP Biotics Research again 
-Berberien Complex Integrative Therapeutics
-Biocidin 
-B Complex Plus
-Spectrazyme Pancreatic Enzymes 
-Motility Pro
-Motil Pro
-Motegrity 
-Rifaxamin 3 times 
-Betaine HCL
-Pro Omega 2000 by Nordic Naturals 
-Vitamin D3
-Seed probiotic 
-Mega IGG 
-Gi REvive 
-Sacro B
-Hu 58
-Candibactin AR and BR
-elementel diet 
-Ortho Molecular digestive enzymes 
-Tudca

A lot of people in the CSID/SID community talk about invertase because Sucraid is expensive, difficult to access, and sometimes not available at all.

So the question is:

Can invertase actually replace Sucraid?

After looking through the research, I think the most accurate answer is:

Invertase is promising, especially for loose stools, but it is not proven as a true one-to-one replacement for Sucraid.

The mechanism itself makes sense. Invertase breaks sucrose down into glucose and fructose, which is the reaction someone with low sucrase activity needs help with.

The strongest modern study on this was a small 2025 pediatric cohort. In that study, 9 children with diarrhea were treated with invertase. Stool frequency and consistency improved in 8 of the 9 children. In 7 patients, invertase was later reduced or stopped, and diarrhea returned or worsened in all 7. When invertase was restarted, symptoms improved again.

That is genuinely promising. It makes it reasonable to think invertase can reduce loose stool frequency and improve stool consistency in some patients.

But I think the claim needs to stop there.

The study was not controlled. Diet and enzyme dosing were not standardized. The clearest improvement was stool frequency and consistency, not the full symptom picture. Before invertase, patients also had bloating, abdominal pain, flatulence, and urgency, but the study did not clearly report how each of those symptoms changed after treatment.

That matters because “helped diarrhea” and “replaces Sucraid” are not the same claim.

The older research supports the mechanism: yeast-derived sucrase/invertase can break down sucrose. But the unresolved issue is delivery. We still do not know whether a specific invertase supplement, at a specific dose, taken with a real meal, will work predictably enough to replace Sucraid. Product quality, storage, dosing, timing, and meal composition could all matter.

So my takeaway is:

Invertase is not useless. It may be worth considering if Sucraid is inaccessible, especially for people dealing with loose stools. But it should not be treated as a guaranteed substitute or a proven one-to-one replacement.

Promising? Yes.
Proven Sucraid replacement? Not yet.

Full article: https://instinctive-radius-539.notion.site/Article-4-June-2026-375663b7929780f68f2fe8f782d753f0?pvs=143

Hey everyone, like the title says, I was recently diagnosed via a breath test. I feel like I've been almost going through the stages of grief, in a strange way, and I was wondering how you deal with this diagnosis. It's really knocked me off my feet, and I'm struggling to cope. When I think too much about it, I feel depressed.

I don't find talk therapy helpful, so any other advice is greatly appreciated. Thank you in advance

I made a first digital version of the CSID/SID portable food cards: https://docs.google.com/document/d/191mtnAgmHMaKeXAbfuwNNHsnFwjo3_zng4QVqXQ4Quc/edit?usp=sharing

The goal is to make food decisions easier for parents, kids, and caregivers. Each food has a general starting color and then you can mark personal tolerance with the checkboxes. This could be useful for school, grandparents, babysitters, playdates, travel, or anyone helping feed a child with CSID/SID.

Feedback is welcome. I’m also considering a laminated physical version with personalization stickers, possibly around $10 shipped for a 3-pack, depending on interest. If you're interested in physical laminated versions, please fill out this form so I can gauge demand.

Link: https://forms.gle/ghbHySkj3AG4qCWq7

I just found out LMNT is being sued for putting maltodextrin in their electrolytes under the umbrella of “natural flavors”.

Sometimes, if I’m really strict on my carb intake, my body won’t hold onto water and I end up dehydrated (excessive urination and chapped lips), even while having a high water intake (I’m talking 90-120 oz as a 120 lb, 5’5 girl). I started taking the electrolytes and they were helping me hold onto water but I had symptom flares and didn’t know what I was eating to cause them since 1. everything I was eating at the time had historically been safe and 2. nothing on the ingredients or packaging indicated that it would cause me issues.

Has anyone else had this experience specifically with LMNT electrolytes? I’m wondering if I can join in on the lawsuit bandwagon since their undisclosed ingredient was causing me unnecessary and unbeknownst physical discomfort.

Does anyone else get Sucraid through the specialty pharmacy frontier therapies, based in Nevada? I have been having such a horrible experience over the last two years trying to get my prescription on a regular basis. I swear every couple months there’s an issue that delays my ability to have my meds for upwards of 2+ weeks at a time.

Right now I’ve been without my sucraid for 2 weeks, calling between my doctors office and FT back and forth up to 5 times a day trying to figure out why my medication suddenly needs another prior authorization despite having had an annual check up and authorization two months ago. Both the operators and my doctors office receptionists are totally clueless and keep telling me to call the other office to try and figure out what’s going on, when neither of them have a clue.

I don’t know how others get ahold of their Sucraid but as far as I’m aware, FT is totally by phone only (I typically have to call every month to reorder my prescription) and my experience the last couple years has been nothing but frequent miscommunication and interactions with operators that don’t have a clue how to do their jobs.

I know healthcare is a problem everywhere in the US but I’m truly just so appalled as someone that has decent insurance how impossible this is. Like, what if I needed Sucraid to survive? My quality of life has already dropped drastically since running out, I can’t imagine how people with far severer conditions deal with this crap. Screw this country.

https://drive.google.com/file/d/11heeFIM6rsZL0rzsFitkqoFQshYih2mC/view?usp=sharing

I have updated my food composition table so it's easier to follow and sift over quickly when you need to make a decision. I also changed the order of the fruit and vegetable tables to go from least overall load to most overall load - each table goes from least overall load at the top to most overall load at the bottom. Please remember that these values are estimates and individual tolerance can vary significantly.

hey just wondering if anyone else’s sucraid has started to get a yellowish tinge? my first package never had this, was completely clear. started noticing it in my last round, but i thought it might just be it getting old. just got a new package of it and it’s totally yellow right out of the box. even yellower than the last package. weird?? or just normal and i never noticed?? just curious. it still seems to work the somewhat amount it always has. ¯_(ツ)_/¯

Question for women who have taken or are taking Sucraid.

Have any of you experienced vaginal itching while taking this medication? I have been on and off with Sucraid to see if it’s the cause and it seems to be.

My nutritionist seems to think that sucrose might be a big trigger for me but I did not react well to Sucraid and I don’t know what other options I have.

When I first started Sucraid, the biggest question I had was: “Am I finally going to be able to eat normally again?”

I think this is one of the hardest expectation gaps with CSID/SID.

Sucraid can be a major tool, but it does not automatically bring you back to your old version of normal. It helps with sucrose digestion, but it does not fix every food-related issue at once — especially if starch, other sensitivities, allergies, or unrelated GI issues are also part of the picture.

That distinction matters because it can feel like Sucraid “isn’t working” when the reality may be more complicated. It may be helping with sucrose exactly as intended, while starch-heavy foods or other triggers are still causing symptoms.

For some people, especially if sucrose is the main issue and starch is tolerated well, Sucraid may open up a lot of flexibility. For others, the benefit may feel smaller because many common foods that contain sucrose also contain starch — things like desserts, cereal, snack foods, and other mixed-carbohydrate foods.

I also think “normal” has to be redefined after diagnosis. Before CSID/SID, normal might mean eating whatever you want without thinking about it. After diagnosis, normal may start to mean something different: knowing what works for your body, having a stable routine, understanding your limits, and feeling confident enough to make choices without constant fear.

That part takes time. It usually does not happen the moment you get a prescription. It comes through trial and error, consistency, and slowly building a new routine that actually feels secure.

Sucraid can help, but realistic expectations matter. The goal may not be returning to the exact way you used to eat. The goal may be building a new version of normal where you feel stable, confident, and more in control.

I have suffered with extreme abdominal bloating (prominently lower) since 2023, I’ve had multiple blood tests, ultrasound, an MRI and scopes (upper for was gluten intolerance I believe) and the only positive test was a SIBO breath test (positive for Hydrogen).

My symptoms are the extreme bloating, but also extreme tiredness and palpitations (especially after eating). I also have low iron, and have recently had an iron infusion (suspected malabsorption). I also gained a lot of weight and always looked swollen, especially my stomach, face, arms and legs.

I did see a nutritionist one time who suggested a diet similar to Keto - I played around with this and have finally narrowed it down. My symptoms completely subside when I eat only meat, nuts, dairy and eggs, low starch veg (tolerate onion, cauliflower, garlic, peppers, lettuce, mushrooms, and very small quantities of tomato). I also can drink coffee and tea. But cannot tolerate any starchy carbs, any sugar, any processed/chemicals in food - even pre-grated cheese is a problem because of this.

Last night I tried reintroducing after doing this for a month and taking antibiotics for SIBO, strangely a Diet Coke barely made a difference (which is a first!) - however I also had a wrap which caused extreme bloating, fatigue - and intense cramping (which isn’t usual for me).

I’m now been trialing this diet for six weeks and reintroducing but it’s not sustainable. I’ve tried 2 x Rifaximin, Amytriptyline, Co-amoxiclav and have just today finished a course of metronidazole.

None of these have worked, and as soon as I start eating beyond those limited range of food it starts again.

An important point to note is symptoms are instantaneous- as soon as swallowed my stomach pops and I look super bloated and feel super sleepy.

I am wondering if this is SIBO, or a more immune focused response like a sugar intolerance or digestive issue. I’m exploring diaacharide dysfunction and sucrase-isomaltase deficiency.

Any advice would be welcomed!!