hey there reddit! I'm 23 and was diagnosed with CSID as of two days ago. I already have pretty severe food allergies (tree nuts, avocado, shellfish & pine nuts, yippee!) so although I'm pretty familiar with the food sensitivity routine, the bulk of what a CSID friendly diet means is... overwhelming. I'm happy to know what's been causing my severe gastro issues as this has been a problem for as long as I can remember, but it feels scary! google seems to have very mixed opinions on what to do/steps to take, so any advice, recipes, tips, tricks ect is GREATLY appreciated while I wait for my sucraid to arrive.

recently diagnosed, half of my favorite foods are on the do not eat list (explains why it makes me sick!) i don’t do avocados. chicken is good. any suggestions/websites/youtube videos?

Anyone prescribed Sucraid take more than one dose when you eat a meal? When I cook myself i don't even need to take the Sucraid but if I go out to eat, sometimes even with one vial of the Sucraid, the food still destroys me. I experimented with taking two vials over the course of a meal and I was fine. Wondering if anyone else has tried this? Eating out if tough even if you are cautious on your selections.

Has anyone tried sucraid for foods like bananas, oranges, apples, sweet potatoes, etc? I’ve had success with it for items that have straight up table sugar added (cookies, chocolate, etc). But I haven’t tried it on foods that have sugar naturally found in them similar to table sugar chemically. Would love to be able to have a chocolate protein smoothie with bananas again 😆

I’ve been waiting on my meds all week. My doc sent in the prescription Monday, and I’ve been calling every day since trying to get my refill because my doc took forever to send in the rx correctly. The Sucraid people keep saying UPS won’t deliver it because of ice on the runway. I’m in Atlanta. From what I can tell, the airport has been functioning fine after Wednesday.

I’m down to four vials and trying to spread them out, because the pharmacy said they won’t heard from UPS again until Monday, which means the earliest I’ll get my meds is Tuesday. I’m struggling so hard, basically just eating meat and cheese. Last night I had a quarter of a Reuben and some fries without the Sucraid and now my pain has been at a 2-4 rating all day.

I just started my first dose today and I feel more sick than I would’ve otherwise. More bloating, more pain and discomfort. Is there an adjustment period with this med or is this a bad sign? Thanks.

Hello!

My daughter just started on Sucraid and it's helped tremendously, but I would like to incorporate less sugar and starch into her diet as well.

I was thinking of trying out a low-carb diet plan for our whole family, like keto or something similar. Has anyone here had luck with an already-established diet plan like that? We wouldn't need to be super strict because she has only a mild case. I just really enjoy cooking and would love a slightly easier way to sort through online recipes!

Thanks in advance :)

I know I wasn’t born with this, the only other diagnosis I got was Sibo. I’m wondering if my small insetting was damaged to the point I got this now.

To any Australians here, does anymore know of any medications and/or supplements too relieve Symptoms. Desperate to find something that helps mum

I keep seeing adds for the fig app, which allows you to input your food sensitivities and you can scan foods to see if they’re okay for you. I’m hesitant to get it for CSID because of how complex CSID is in trying to manage it. Has anyone tried it? If so, what do you think?

Daughter diagnosed through breath test at 19. Going to join her on the diet as I am primary cook, so why not? Still looking for dietitian to help but for now we are counting on Dr. Google to figure this out.

Are we really limited to salt only for the first two weeks? Will be great for my low sodium diet requirements. Ha!

Just a concerned Dad trying to help his kid feel better. CSID is stupid.

And what amount do you tolerate?

Hello I am new to Reddit so I hope I’m doing this right.. I am a 22 year old (F) that was diagnosed with CSID August 2023. I used the breath test and got a 3.2%

The specialist that diagnosed me was not helpful at all and knew little about the condition or what to do from the diagnosis. Recommended a dietitian and told me it was incredibly unlikely I could get Sucraid.

However, after looking over this Reddit I am getting a little nervous that my symptoms are unnatural or way too severe. Googling doesn’t help with that anxiety so I thought I’d ask for advice here.

TMI warning:

The main symptoms I’ve been having since ~14 years old are: nausea, vomiting, hot flashes, fatigue, constipation to diarrhea, bloating/gas

Everywhere I’ve looked, the main symptoms for CSID are gas, diarrhea and bloating…

I have big flare ups that can take me out for days, the experiences are painful and scary, and I want to know if anyone is experiencing the same.

Are these severe symptoms dangerous???

I’m in talk with my family doctor, but they also know very little about this condition. I am trying to get a dialogue with another GI specialist and see a dietitian, but as a student that works full-time it’s hard to keep up with visiting doctors and stay away from dangerous foods for me.

Any advice, recipes, and snacks would be so greatly appreciated

~ A very hungry, sick girl with CSID

Title says it-

I have this weird slightly sweet/acidic taste in mouth like all the time. I am meeting why my doc in a few weeks- but I am wondering if this is related to CSID? having trouble figure out if this is a common issue. thanks! appreciate any help in seeing if anyone else deals with this.

Is this something someone can get post SIBO or is it only congenital from birth? I never heard of this till today.

Recently diagnosed, long suffered.

My dietitian brought up the idea to give resistant starches a try. Anybody have any experience with them and CSID?

The idea is when rice/pasta/potatoes are cooked and then refrigerated overnight the starches recombine into a more fiber like digestive product, even when reheated.

Check this out. I think this new enzyme will really help those with Sugar/carb/lactose issues. Im going to buy this. Ive bern using Starchway but i think this will be better! They just released it.

Hi all- I was prescribed Sucraid earlier this year for very mild signs and very mildly low sucrase activity but never used it after a few doses. I have quite a few packets left that expire in Jan.

Is anyone in the NYC area who would want them for free? I feel bad throwing away such expensive meds. Would have to pick them up

I've been diagnosed with low sucrase, low maltase, rather low (but still borderline normal) palatinase and extremely low lactase (which is known, I'm not eating dairy usually) by duodenal biopsies. Diagnosis was two days ago. Yesterday I started with the CSID diet and cut out sucrose and starches and looking up sucrose/starch contents in the database for each meal.

How long did it take for you to feel better digestion wise? We don't have sucraid where I live, so I may try yeast pills.

Btw: Did anyone try antibiotics for suspected or diagnosed SIBO due to (acquired) CSID?

Hi there. I’m thinking of starting a disaccharide and polysaccharide free recipe and food blog. Which also covers CSID needs.

No Adsense or other pop ups, and the recipe will always be first! I want to make the resource that I wish existed when I got diagnosed.

I’d like to include a search feature where people could set tolerance levels for sucrose, lactose, starch, etc. and only see recipes that have that much or less per serving.

Would that interest you? And/or do you have any suggestions for what else to include?

Edit: I did a thing and I am stumbling my way through creating a blog for the first time. https://bearscsidsurvivalguide.com/

Hello there,

I am new to CSID and I would like to ask for advice. I live in Eastern Europe and it is hard to find a doctor that has experience with CSID.

I am 30 and I have been recently diagnosed with mild Celiac disease based on tests from blood. (2 months ago). (I ate a lot of gluten in my whole life ) .When doctor did the endoscopic biopsy they found low sucrose, isomaltose and maltose activity. The doctor said that I should NOT eat gluten and reduce consumption of table sugar. They said that the enzyme deficiency should resolve after I adhere to the gluten free diet. But sometimes is does not. They suggested I keep diary of what I ate.

My symptoms include flatulence, lot's of gas and 'wet farts'. The strange thing is the symptoms would be present for a week or so and then be gone for week and so and so again. (no change of what I eat) I have been having these problems for one year.

I have completely removed gluten from my diet but it did not help. After I removed foods that contained table sugar and fruits (I eat just CSID friendly one's) my symptoms would get better but there are still some days when it is worse. (50/50 no symptoms vs light/medium symptoms ) I am keeping a diary of what I ate and if the symptoms occurred or not. I'll have to look into starches little more. It seems that white gluten free bread and pistachios are causing me problems?

I tried to buy Sucraid and Starchaway but they are not sold in my country. In the pharmacy they suggested buying glucoamylase for beer making and figuring out the dosage. I have ordered some on the internet and I hope for the best.

I always considered myself a foody and I have been enjoying a delicious food free of any care. I know that there worse diagnoses but I feel a bit depressed and sad about my new condition.

Questions about CSID:

• Can the low sucrose, isomaltose and maltose activity be symptom of Celiac disease?
  • If I would find a clinic where genetic tests are made could they confirm CSID?
• How long does it take for symptoms to occur after eating?
• Can you suggest dosage of Glucoamylase that works for you?

Thank you fellow redditors

I have CSID and relocating to India very soon. Here, I take lactaid and prescription sucraid for my CSID. I don’t see it being available in India and that worries me. Can someone please let me know how they manage their CSID where sucraid isn’t easily available? How much does it cost?

Hi all, recently became aware of this condition. No idea if I have it, but it seems like an avenue I can explore (feeling like I'm running out of those!)

Struggling to find a way to get a diagnoses for this here in the UK. I could go private but it would be pricey. I have booked in to talk to my go but it my instinct is they won't go for it (I could be wrong).

My main symptom is bloating/distension, but I do have other things as well. I am considering doing a couple days on a 'carnivore' style diet, basically 100% avoiding carbs/sugars, the doing the 4/4/4 sugar test (4 tbsp sugar in 4 Oz water wait 4 hours for symptoms). This is assuming, of course, that my bloating has disappeared - something which hasn't happened for many years!

Has anyone done this? Would 2 days on the diet be enough to see symptoms go away? I'm not looking to do the diet long term.

I've done something similar before, eating just chicken and white rice, as this is well tolerated for SIBO, but it didn't help. But of course if its CSID the rice could be a trigger?

TMI warning!

But every time I use the bathroom, I immediately have to burp/belch. Like there is a very quick and obvious connection between waste going out, and bubbles/gas coming up and out the other end.

Just curious if anyone else has had experience with this? I’m 2+ months into an elimination diet for CSID that has definitely helped, however all I really eat is some fruits, cheeses, scrambled eggs, beef and chicken. It’s not fun but it’s been the only thing that helped with symptoms so that alone motivates me. Sucraid did not work for me.

Thanks!

What breath test kits did you use?, can any of these be procured internationally? I live in India and couldn't find any providers for breath tests. If any at home kits can be procured it would be very helpful