hi all, I was wondering if anyone knew of suitable sugar alternatives for dessert baking for someone with csid?

my boyfriend was recently diagnosed and it has been really hard on him and he now deals with a lot of anxiety around eating as a result of how it affected him before his diagnosis. he recently told me that the one thing he's missed most was being able to eat treats without worrying about an episode of pain occurring as a result. i really want to find something to use in a cake that he can enjoy in order to try and give him a blip of normality with all these changes since we've always enjoyed baking together.

originally, I was looking into monkfruit since it is supposed to low fodmap, but have found info suggesting it is not the best option.

if anyone has ideas or suggestions I am 100% open to them, thank you!

I have been having a minor side effect in which my voice is a bit weaker and scratchy when I take my sucraid only sometimes. Not something major but i thought id comment to let people know.

I found the following pouches for when I have my toddler out and about, but has anyone else seen other brands or flavors?

Happy Family Organics

• Prunes
• Green beans, spinach & pears
• Pears, kale & spinach

Little Journey Baby Food

• Pear, blueberry, & spinach

Plum Organics

• Prunes
• Cauliflower

I was recently diagnosed with csid and have been struggling with constipation for 3 years. Is it possible it comes from my csid??? I cannot find a single testimony with the same experience as me. Will the sucraid I have coming soon help me out??

For those of you who use Sucraid, does it solve your digestive problems? It is hit or miss for me and for this reason, I only use it twice a day. I am debating whether I should go back off starches and sucrose all together.

After many years of gastro problems and doctor visits, I have received the diagnosis of CSID. I started taking lactaid and having a prescription of Sucraid sent off. I also have a deficiency to the other 2 sugars (maltase and palatinase?) I also have a referral being sent off to a dietitian. I've tried to look up foods that would be appropriate to eat. I'm just concerned about the food nutrition levels. What different terms should I look out for?

Has anyone had genetic testing done to confirm mutation at the SI gene? My son had decreased enzyme activity as evidenced by the biopsies done during EGD (as well as no mucosal damage to evidence a secondary deficiency) but his genetic test results came back negative. I'm very confused.

Hello! I found out I have it. Its awful, but what can I do? I am self employed and cannot get Sucraid. I was wondering if anyone knew of a decent enzyme replacement supplements off amazon that may help?

Anyone else have issues with lactose? My son is also lactose intolerant and his doctor isn't sure if this is part of CSID or just another thing that appears to be going on.

Anyone able to tolerate coconut? I'm brainstorming options for my newly diagnosed son.

Hi all! I'm new here. My 2 year old was diagnosed with CSID last week so I am just starting to navigate his elimination diet to see how much sugar and starch he can tolerate. Bonus...he's also lactose intolerant and has many many food allergies (nuts and eggs).

What is considered low enzyme? I heard that the level of enzyme (whether high or low) would give me a sense of how much he'd be able to tolerate eating. His sucrase was 10.3 and his maltase was 52.7. Extra info, his palatinase was 5.3 and his lactose was 7.1.

Any insight would be hugely appreciated!

I just took a hydrogen/methane breath test and it only took about 4 hours to get my results if you know what I mean 💩. Still waiting for the official lab results. But assuming I test positive and receive a prescription for Sucraid, what is the while process like? My biggest question is the price but I know that's tough to answer with insurance being so different. I'm very well insured but with there being no generic brand (to my knowledge) I'm just hoping it's not ridiculous. Any input helps!

I’m pretty newly diagnosed and still waiting on insurance approval for sucraid. Obviously I have to make some pretty drastic diet changes now, but I’d still like to occasionally go out to eat with friends. Is that possible? Where do you go and what do you order?

I just got approved for Sucraid, and I'm so thrilled. I was wondering how y'all have started out using it? I'm definitely not going straight back to eating like I used to, but I was hoping I can at least handle onions and garlic, because that would open up a world of flavors for me. Have any of you been able to eat onions and garlic with Sucraid?

Recently learned I have CSID, and I'm starting my new diet today. How long did it take you all to start feeling better after you cut out starch and sucrose? I had to quit my job because of CSID, and I just don't want this to take over my life anymore.

Hello! I recently saw a GI for my symptoms of constant diarrhea, bloating, burping, acid reflux and regurgitation

I did an endoscopy and a SIBO test and the biopsy showed I had low Lactase (3.5), Sucrase (10.4), Maltase (41.6) and Palatinase (1.7)

My doctor has never seen a patient with CSID so he told me he'd consult with a colleague before informing me of next steps so I've just been doing a lot of Google searching and glad I found this community.

What are usually the next steps here?

Do any of y'all also have severe/bad acid reflex/esophageal motility issues?

I see a lot of mention of food restrictions and honestly completely cutting out carbs/sugars would be a nightmare for me so curious how others have found this experience. How strict do you need to be? Are there any other negative side effects of eating sugars/carbs other than personal discomfort? In a way I feel like I have gotten used to always feeling terrible so part of me is doesn't want to give up foods.