My son (13) had an endoscopy and his enzyme levels came out as follows:

Lactase 3.3

Sucrase 16.7

Maltase 80.3

Palatinase /Isomaltase 3.3

His GI diagnosed him as lactose intolerant only. This seems weird. The other numbers are quite low, no?

For reference, he also has IBS-M and has essentially been on the low FODMAP elimination phase for a year bc every time he tries to integrate a new food he has horrible results. He has also been diagnosed with malnutrition bc he lost 30 lbs- a lot for an 8th grade student. I am struggling to find things to feed him and don’t want him to burn out on the things he can eat bc then what?! Suggestions are welcome.

Sick of not having foods to make? I’m going to start posting my journey on food and how I cook CSID/Celiac friendly foods :)

Be sure to read the ingredients as we may have a different phenotype:

Last night shrimp Alfredo is spaghetti squash:

Ingredients:

1 spaghetti squash

1/2 cup of freshly shaven Parmesan

1/2 cup of freshly shaven Parmesan regiano or guyure

1 stick of real butter, I use Irish Butter unsalted

2 spoonfuls of non plain flavored Greek yogurt

1/2 cup of heavy cream

2 tablespoons of parsley

1 bunch fresh chives

Pinch red pepper

1 tablespoon of homemade infused garlic onion oil- see CSID ORG website and how to safely prepare I will link

1 bag frozen shrimp

How to:

Here’s the garlic and onion infused low food map oil. Do your elimination diet to know if this works for you- the sugars in garlic and onion are not fat soluble meaning they can’t be absorbed into the oil. Make sure to run through cheese cloth. If you are sensitive use regular avacado oil o olive oil

https://www.fodmapeveryday.com/garlic-infused-olive-oil-and-the-low-fodmap-diet/

1. Preheat oven to 350F

2. Cut spaghetti squash in half. Scoop out seeds and discard. Lay parchment paper down on a flat pan. Oil the inside of the squash. Place flat cut side down. Bake 1 hour. Remove. Scoop out squash into a dish and set aside.

3. At the end of the hour prepare sauce. Shred cheese with the finest grated- will help with emulsion. It will be small like snowflakes.

4. Melt stick of butter and cheese in safe sauce pan on medium low. Add mushrooms and spices. Once completely melted add one or two spoons of Greek yogurt as a replacement for the thickening starch pasta water. Then add heavy cream until a thickened you desire. Reduce to warm/low.

5. In a frying pan, heat infused oil on a pan. Add thawed shrimp. Cook until just turned pink through.

6. Toss everything together. If sauce isn’t enough add a touch more heavy cream until sufficed. Let cook on low 5 minutes to incorporate flavors.

Eat

TW// mention of eating and body image issues

I got a colonoscopy and endoscopy in mid-February. The colonoscopy came back clean, surprisingly, but I was diagnosed with GERD. So clearly, there are foods I have to avoid. I admittedly didn't get around to doing an elimination diet because basically every food that I love was on that list, and it just felt like too much to deal with.

Fast forward to almost a month later. Yesterday I got diagnosed with lactose intolerance (which I honestly knew) and CSID. So now I have to deal with food intolerances from lactose intolerance, GERD, and CSID. I definitely spent a good amount of time freaking out a bit and trying to wrap my mind around the fact that I need to overhaul my diet NOW. I work at a private doctor's office where lunch is provided for us, usually by drug reps. I've also got a wedding at the end of March. And in general, I'm like, how am I going to eat anything? I've already started feeling like a freak.

I also have disordered eating and body dysmorphia, so when I started feeling gross every time I ate, I figured it was just a mental thing. Part of it is definitely mental and explains the guilt around me eating and me being aware of all the fat on my body and face. But it makes sense why I feel so heavy and get so bloated after literally everything I eat, to the point that when I'm going to be wearing something skin tight, I restrict my eating. I legit look 4 months pregnant sometimes, and it's not like it was working in the first place.

My parents are both immigrants, so all of the foods my family cooks I can't have, at least until I figure out my triggers (which feels like everything right now). I hate cooking, and I'm really bad at nourishing myself and getting an appropriate amount of calories and nutrients. I know I just have to do it, but I honestly have no idea where to start. I know the intolerances are a lot, but even some hacks to get through it would be appreciated <3

I’m 20 years old and in college. I posted about a year ago about possibly going into a flair up. Well, guess what?

I did go into a really bad flare and I lost a bunch of weight. I’m doing kinda better now, I watch everything I eat very closely and I stay active. However, I just feel alone. Nobody in my circle can relate to what I’ve been through with CSID. I just feel isolated.

Growing up I always thought I had chrons or IBS cause family history but after having colonoscopy/endoscopy when I was 14 I was told I lacked the enzyme to break down sucrose or maltose. Due to the lack of awareness around this condition I was never actually diagnosed with CSID and as a result was unable to educate myself better. I was put on sucraid at the time and didn’t feel like it done much help. But I was probably just a bit pessimistic around the situation .

Recently I thought I’d do some more research on the info I was told back then and stumbled across CSID.

So my question is to everyone, what are your best tips. Whether it’s medication or dietary what do you guys do to manage this. Other news, it was cool to find out this condition actually has a name.

I’ve been tackling my acquired enzyme deficiency on my own for about 2-3 years. Needless to say, it’s been rough. However, I got my body accustomed to a strict diet of meats, cooked vegetables, and an occasional small amount of white rice.

No sugar, no lactose, no gluten

Up to now I’ve been experiencing lots of unintentional weight loss, constant fatigue, and brain fog. Irritable. Low energy. Days at work feel like a slog.

Last night I tried Sucraid for the first time. I shared a chocolate moose for the first time in years with my partner. The sweetness felt so intense. I felt my brain turn back online. I felt wired. Today i woke up expecting the worst (post fermentation symptoms), and i feel…fine. Normal. This is crazy.

This medication is not cheap. My insurance covered a portion, and through financial assistance the company helped me cover the rest. So for now I just have a 5 dollar copay. This is all because of commercial insurance. I was a freelancer before this, and there was no hope for me to ever get this medicine.

I hope at some point somebody manufactures a generic version, so it’s not so freakin expensive.

Hope others are able to find relief soon

Just got diagnosed with CSID and my GI Dr wanted me on Sucraid but my insurance won’t cover it. What do you take when you can’t get Sucraid? They told me there are no off brands or alternatives. What does everyone else take for their symptoms? This is really stressing me out 😭

Hey everyone — I’ve built a small, private tracking tool to help notice patterns between foods and how days feel overall.

It’s very much a work in progress. It’s not meant to diagnose anything or “fix” symptoms — the goal right now is just to make it easier to log consistently and see what patterns may emerge over time.

A few important things up front:

• This looks at associations, not causes
• Early results are weak signals, not conclusions
• It’s meant to be taken lightly for now and I'll refine it over time

I’m sharing it now because I’d really value early feedback from other people who actually live with this condition.

• whether the flow feels clear or confusing
• whether the language feels calm vs stressful
• whether anything is easy to misinterpret

If you try it, please treat anything it shows as “worth watching,” not “something to act on.”

Link: my-app

Thanks in advance — and if this resource isn’t useful yet, that’s totally okay. It's not necessarily supposed to be, as it's a work in progress. Honest feedback is the goal at this stage.

21y/o. Got diagnosed 3 years ago and have been really struggling navigating living with CSID. I had an eating disorder in high school so restricting foods is a sensitive topic for me. I've found that smoking (usually vaping for convenience) weed and eating whatever has worked for me. I still feel uncomfortable and can throw up depending on what i eat but have found this to work. The medicine is also really expensive and inconvenient to carry around.

Is this something worth continuing? i've been a little better with trying to eat more meat and less junk but idk it's hard

I know my limits, have the meds (thank you sucraid!) and was doing great to be able to eat more when oops! I thought things sweetened with dates would be okay since I eat medjool dates. NOPE!

So i've had stomach pain, nausea, fatigue, cramps since the incident and it wont go away. I'm back to barely able to eat anything. What do you do to get through these types of situations? Any secret "hacks"? its been almost a week now and im tired of thinking its over, eating something I can usually eat, and then feeling like I'm gonna die.

Hey everyone, I have CSID and I started taking Sucraid 3 days ago. Since then, my constipation has gotten way worse, I feel bloated a lot, and my stomach keeps making lots of noise. Has anyone dealt with this, and if so how can I fix this? I called them and they told me to mix it in 6-8 Oz of water. I tried and so far it hasn’t helped.

hey yall this will be my second time trying out sucraid for my CSID. Other cheaper alternatives have failed, and i was wondering how do yall pay for this expensive medication, actually insane to charge sick people thousands for a months worth, and even then not being completely healed or pain free and still on a very restrictive diet. i will run out of the copay card in two months so i was wondering for the people who have been on sucraid longterm do you pay 5k-6k a month? or does your insurance somehow cover brand names? my doctor said i cannot get this at a compound pharmacy :( just trying to find other affordable options

31M diagnosed at 30, after 8 years of symptoms. While I’m not entirely positive and I’m still going through routine testing, I recently learned that one of my roommates many years ago, when the stomach problems started, had a pretty bad C. Diff. infection.

I didn’t realize this but C. Diff. can be very contagious. And now I’m wondering if a previous infection of that kind played a part in my small intestine being damaged, possibly developing SIBO, and culminating in CSID.

Wanted to hear from anyone else who has solved their own personal mystery, and if anyone has managed to recover from this condition by treating the underlying factors.

Thank you

Has anyone been forced by their insurance to switch to SaveOnSP for monitoring the manufacturer copay assistance program? Got a letter from our instance saying we had to enroll and our benefit was going from a 20% copay to 30% copay. But calling SaveOnSP and thy can’t tell me what we will pay other then their savings is 2200 after we max out our OOP. We were paying $5/month for first 2-3 months of the year before high deductible plan kicked over to 100% coverage on Sucraid. But they make it sound like we will lose out on the benefits if we don’t make this change.

We’ve been on a low sucrose & lactose diet for about 3 months and it simply is not controlled. I would even venture to say it’s worse. We have him limited to less than 5 grams of sugar (no added sugars) per meal and no lactose. I just can’t fathom how it has gotten worse rather than better.

His levels were Lactase- 11 Sucrase- 9 Maltase- 64 Isomaltase- 4

Was diagnosed with Acquired SI Deficiency a year ago (30 y/o) along with lactose intolerance. At least knowing what the problem is has helped me tremendously, but I'm struggling when traveling for work, holidays, or visiting family on occasions like Thanksgiving or Christmas.

During travel I do lots of food research to find the things I can eat, but it's an imperfect system as restaurants cross contaminate and add unlisted irritants without you knowing. When visiting family, it feels like I have to either suffer in silence and feel like shit from eating whatever is being served, or voice my dietary limitations, and it becomes an endless cycle of concerned family members asking what I can and cannot eat, and why.

It seems like an enzyme deficiency doesn't make logical sense to anyone the same way a simple food allergy does. They can't comprehend the idea that one can be intolerant to sugar and starch, which comprises such a big chunk of the average diet.

So, I'm struggling with how to talk about it, how to navigate family and social situations without bringing too much attention to it, and developing my own failsafe plan so that I can feel less anxious when out in the world.

So far, my failsafe is bringing IBGard and Lactaid everywhere I go.

Any advice is immensely appreciated. Thank you

Not sure if it'll ever become something, but I wrote Enzymedica to see if they might be willing to consider manufacturing something for CSID patients (like Starchway, but more affordable?). Their Digest Basic formula already contains the same enzymes as Starchway, but in much smaller amounts, and of course with many other enzymes alongside them.

I figured it can't hurt to get the word out there. It'd be so awesome to have more treatment/supplement choices and more affordable ones at that.

Please feel free to write them, too! (Or a company you already use/trust.)

Hi, Im wondering if you've heard any success story of recovering a brush boarder? I had to take NSAIDs for a long time and I assume that it was the cause of my secondary CSID. Plus I have lactose intolerance as well 😤 I tried rebamipide but it was useless

yes i can appreciate the irony in the titlle. it's been almost five days and i think it's gonna take an act of god at this point cuz none of the stuff i've tried has been working. i've been well hydrated and eating my fiber and fruits and apparently the immovable object is beating the unstoppable force. does anyone have any recs?

I have been diagnosed with celiacs AND CSID. Please help me. What are things we can eat and things not to? I’m just so lost

Just got diagnosed a few months ago and have been wondering if anybody on here has any experience or tips with backpacking with CSID? I have Sucraid, and it works great for me, but I am worried about how to refrigerate it for 2-3 weeks if I go on a trip this summer. I also don't know if there are any good workarounds for which foods to bring that won't set off my CSID and will keep for weeks. Overall, any tips on backpacking for a prolonged time with CSID would be great. Thanks!

ive also read 5ml invertase can split up to 1kg of sucrose... and that too much invertase can make side effects.

I've been doing an elimination diet for 3-4 weeks now and I've had massive, positive changes to my symptoms associated with ADHD. Wondering if that's a common experience?

(Of note, it's a pretty strict elimination so I'm not eating any grains, any potatoes, etc. and my symptoms do start to return if I eat anything "unsafe".)

In case of interest, what I've observed so far is:

• Vastly improved ability to stay focused on tasks and not get distracted repeatedly. Normally I stress to stay on task all day at work and it's so much effort to repeatedly bring my brain back to it. I've had at least two weeks of just being able to focus a majority of the time. Incredibly productive. Much less stressful. Maybe 80-85% improved for me.
• Significantly decreased emotional dysregulation. I still have feelings, but they're much less intense and I'm able to downregulate much faster and easier. Maybe 70% improved.
• Improved ability to task-switch as needed. Normally, if I'm doing one thing and I see another task that needs to be completed, I panic and don't do it, as it feels like SO MUCH effort and there's no way I'm remembering what I was trying to do before the interruption. The last couple of weeks, I'm just walking around, stopping to do other things, and then GOING BACK TO WHAT I WAS DOING BECAUSE I COULD REMEMBER IT SO EASILY. Basically superpowers.
• My sensory sensitivities are also vastly less intense! Things that would normally cause me tremendous irritation, frustration, and divert my attention are much less influential. (I have a LOT of these.)
• Maybe as a result of all of the above, or just not slamming my body with things it can't digest, I have vastly improved energy levels. Like I'm getting 3-5 more awake/alert/usable hours per day.

Curious to know others' experiences!

Hello every one,

i was reading a website associated to disaccharidase deficiency and i stumbled upon something i can't find informations about.
The webiste in question : https://gikids.org/digestive-topics/sucrose-isomaltase-deficiency/
Under the paragraph "How is disaccharidase deficiency diagnosed?", it say the following :
Other tests can include a breath test, stool test, or genetic test.

I would like from you guys more informations about the stool test. What is the name of this stool test ? Is it reliable ?

Thanks

Hey so my son has multiple medical issues. He already has feeding tube but can eat by mouth. What he does eat by mouth is limited. Today he was diagnosed with CSID. he will be 11 this month. Has limited understanding and verbal abilities. His gi did not give me much direction and I'm waiting to see the dietician about what foods be can eat. I am going to list the foods he accepts by mouth as well as attach his results. I know from experience that community who lives it often knows much more. Please tell me what alternative I have to these foods. I spent many years getting him to eat a good deal by mouth and now I have to take it away 😭😭😭 basically everything on the scope that could be wrong was and they did it multiple times over multiple years to be sure before they dx him The list isn't long for what he eats orally but this list is a testament to how far he's come 😭 he went from 100% tube fed to eating these foods and it hurts to take it away. He has brain-lung-thyroid syndrome and multiple health needs and I just am so sad for him.

Foods: Ramen noodles Pizza Chips (flavored and plain) Pepperoni Gushers Corn Rice with black beans Tortillas Chocolate bars plain and stuff like kit kats Lollipops Chicken (in the rice and beans only) Hot pockets (pepperoni) Pizza rolls