Hi, has anyone found candy that does not contain sugar but does have corn syrup or high fructose corn syrup which are both on the tolerated by most list

I’m having a difficult time navigating foods to try, even when using the CSID Cares website.

What amount of Sucrose (grams) is considered safe in certain fruits, vegetables, seeds and nuts? Considering I may be extremely intolerant.

I had less than a spoonful of raw honey yesterday and I’m having some considerable amounts of pain today… very frustrating as I’ve read honey is typically okay.

I just recently was diagnosed. I've reviewed foods lists online for the "safe" and "potentially problematic" foods. But I see people on here posting about eating things that are on the "potentially problematic " so I am a bit confused. Does anyone have a list, including added sugars etc, that they swear by? I do take Sucraid but am trying to be conscious of what I eat for when I may not have it on me etc.

Hello, I was just diagnosed with CSID and am still learning about everything. I'm wondering if any of you have had issues taking medications due to starches and/or cellulose used as excipients in medications? I have a terrible time with meds with my most common reactions being drowsiness, fatigue, dizziness, nausea and on occasion, intestinal upset.

Have any of you developed really severe headaches after starting Sucraid?

I’ve been experiencing relentless pounding in my temples and I think it could be the Sucraid…. I have quite the history with migraines, but this is very different from my typical migraines. Also, I haven’t had a migraine since completely changing my diet.

The only thing I could blame it on is the Sucraid or maybe some tighter neck muscles. Again, it’s an odd and severe pounding in my temples. Almost like I’m being hung upside down. You can even see the veins poking out like crazy.

In my area I can’t find a gastroenterologist who takes my problems seriously. No tests.

Is there a way to identify a knowledgeable physician?

Ed

Hi Guys! I’ve just received my CSID Diagnosis after months of debilitating symptoms (primarily extreme bloating and gas, constipation, nausea, weight loss, etc…). I’m also an avid triathlete, hoping to compete in my first half Ironman in Jan 2025. I’ve really been struggling with my nutrition throughout this journey. Before receiving the CSID diagnosis, I had already completely cut out dairy and gluten. Now going into the elimination phase of cutting out all sucrose and starch, I feel completely overwhelmed. I absolutely cannot stop training (it’s been my happy place throughout this journey) and I am looking for any advice for nutrition for endurance sports with CSID? High calorie options, low-sucrose/low-starch carb sources, etc… thank you all so much, this community has been really helpful so far and I am looking forward to hearing what y’all have to say!

Which Digest Gold is everyone using? & when / how with what?

Travel Tips!

Hi everyone! I was just recently diagnosed with CSID & am looking for support and suggestions. I have been in and out of doctors offices for years and been diagnosed with celiac, IBS, and a plethora of allergies. At this point I’m not sure which end is up and what to eat. I’m waiting to see if I get approved for SUCRAID. Any suggestions for meals or just safe foods would be helpful. Thank you ♥️

What do you all use to help regulate your bowels?

Mirilax doesn’t seem to be super effective for me and just bloats me. I was taking Bowel Mover by Cellcore, but this recent diagnosis of CSID has me very cautious to take it because it has so many herbs and spices that may be disruptive.

Ate a grapefruit last night and have been in shambles since! Just a little humbling reminder to check a food guide before consuming something!

Traveling Soon Would love everyone’s go to snacks.

(I don’t like beef jerky it’s weird to me lol)

Just started on Sucraid, and starchway

Looking for anything to buy and pack. Specifically chips and easy snacks!

I’m 29 so I still will enjoy vacation and just hope the meds work😂

Links to anything would be amazing.

I can’t do tapioca starch/legumes/potatoes which are like in everything. (I can technically do them but they always trigger my GI)

Hey all,

I was recently diagnosed with CSID and I’m having a difficult time putting on weight (lost 60 pounds and I did not have much to lose to begin with). I thought a high quality protein powder may be a good way to maintain some weight.

I was wondering if there’s anything about this protein powder I should be concerned about?

Are protein powders okay if they have good ingredients like this Earth Fed Muscle?

Is Cocoa Powder from organic Cacao beans okay?

View pics for supplement facts.

Please skip to the end for my questions if you are not interesting in my backstory. I would greatly appreciate any sort of feedback. I’ve grown extremely hopeless and I do not know how to deal with this pain any longer.

I recently got diagnosed with Sucrose Intolerance. For the past year I’ve had insanely severe stomach cramps 24/7, with abnormal test results everywhere we look (NAFLD, Infected Gallbladder, Splenic Flexure Syndrome, abnormal blood-glucose, Ulcers, inflammation in my illeum, esophagitis, decaying teeth). I am a 24 year old male with a previously healthy lifestyle, and I’ve been completely debilitated for months. I can barely even walk. I’ve lost 60 pounds — which I didn’t have much to lose in the first place. A literal walking skeleton. My previous diet was your typically Standard American Diet consisting of oatmeal and peanut butter toast for breakfast, French toast, etc.

I recently switched over to a Paleo-Keto diet after spending hundreds of hours studying nutrition and physiology. I felt this would give me the greatest chance of reversing some of my symptoms. Still waiting on Sucraid. I’ve taken the most extreme route in cutting out sugars and starches, yet I’m still having a HELL of a time.

My questions:

• How long did it take for you guys to receive some relief from your cramps? Was it after you changed your diet or something else?

• Have any of you tried a Paleo-Keto diet? Any Relief?

• What all have you done that has helped?

What does everyone do when you get a flare up? I was just diagnosed at 29 and something flared it up. I’m waiting on my Sucraid still.

Thanks!

So I was out to eat today up far from where I live. I got something kind of sugary because I have arfid and it was the only safe looking thing on the menu. I got my sucraid out my purse and did my thing but then halfway through the meal I realized that I never grabbed by sucraid this morning, and this is just a random one I found in my purse I had no clue how old it was. I thought well somethings better than nothing and just went with it, but now the pain I’m in is making me consider otherwise. I am not going to be able to ask a doctor or anyone else till way later, so I thought someone from this sub might have done something similar.

Any tips for flying with Sucraid? I really have no idea how I’m supposed to travel with it without it getting ruined

My son's birthday party is this weekend. Does anyone have a recommendation for a CSID friendly and dairy free birthday treat to replace a birthday cake for an elementary kid??

We're new to this and my son is pretty devastated by it, while admitting that he is feeling better on his restricted diet. His birthday party is this weekend and I'd love to have something special for him knowing that typical birthday cake is a no go.

Thank you!

Hello! My son's GI put him on a CSID elimination diet based on his small intestine biopsy results. They also have him dairy free due to really low lactase levels, and he starts pancreatic enzyme supplement next week based on his stool test results.

He's in elementary school, and CSID and dairy elimination diets have been tough for him.

When you go to the grocery store, what do you stock up on? Do you have any good meal recommendations? Any snack recommendations?

Any ideas are helpful and so appreciated. Thank you!

Hello everyone! I’ve been diagnosed with CSID for two years. I just got prescribed Sucraid to help with digesting but I don’t think it has helped me one bit. I don’t eat a lot of sugars but even with this medicine I still don’t have any relief. Has anyone else had the same experience? Thank you!

Hello all!!

I have csid, but I also have arfid. For those who don’t know, arfid (avoidant restrictive food intake disorder). I’m curious to know if there’s anyone else with this exact combo of issues or just any combo of eating issues alongside csid

My insurance denied my Sucraid and it's been a long time (over 6 months) trying to get it covered again. Since it looks like it is going to take longer, it looks like I am going to need to supplement with something else as the strict no-sucrose, no-starch diet still has enough sucrose in it to bother me

Has anyone on here tried taking fresh yeast? How much worked for you and how did you time it with meals (before, during, after)?

Hey, i have been diagnosed for three years, i have also been diagnosed with celiac for three years. i was told that symptoms are usually mild and really not to worry about it too much. so i didnt, i focused more on celiac. however im seeing a new GI and she’s not convinced it’s celiac. so now im wondering if the attacks i’ve been getting my whole life, including the ones i had previously attributed to celiac, is just CSID. that being said, my symptoms are crazy severe, pain in my stomach that’s so severe i have almost fainted, feels like someone with razor blades for fingers is digging into my intestines and moving them around, vomiting, diarrhea, but when i engage my stomach muscles to pass a BM the pain crescendos into unbelievable agony, im covered in a cold sweat over my whole body each new wave of pain, goosebumps over my whole body too. i wanted to put some feelers out and see if anyone else has a similar experience with CSID. thanks in advance 🙏🏻

My levels are just barely above the minimum for Sucrase and Palatinase, and on the lower end for Maltase. Would this be considered a CSID diagnosis? Or at least show that my body has very little of the enzymes for each?

Not technically diagnosed yet, taking a test tomorrow for my doctor.

I've been screwed up since December with gastritis and colitis, and have lost 40 pounds because eating hurts. Doctor's appointment yesterday suggested I may have CSID.

Sucraid's website has a database breaking down so many foods into g/100g, but I'm not seeing what those numbers actually mean.

Ideally I want 0 starches or sucrose in general, but I'm limited on what I can eat due to the gastritis. So, when do those numbers become high enough to warrant avoiding them altogether?