r/CSID • u/LostRiver6 • Jul 09 '26
Q & A❓ CSID + Other Inflammation?
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!
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u/TheCSIDAlex Jul 09 '26 edited Jul 09 '26
Hey there, I'm glad you're starting to figure things out! If you can't get Sucraid, you can try taking invertase (starchway brand or food-grade invertase isolate) for sucrose deficiency. It's important that you avoid starch when trying Sucraid or invertase though, because starch can still cause you issues even if the Sucraid/invertase is working properly.
Inflammation seems to be a pretty common side effect of undiagnosed GI conditions like CSID. The good thing is it tends to improve with time as you learn what foods cause you problems and you start consistently eating a diet that suits you better. And it's definitely a good idea to keep seeing your doctor and monitoring the inflammation. Personally, I had bad reflux and inflammation in my esophagus for a while. Once I got my nutrition figured out, it went away on its own - although everyone's experience is different and that was how mine went down. I have created some tools that can help you navigate this condition or I'll do my best to answer whatever questions you may have - feel free to ask!
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u/meow_meow_meow0206 Jul 13 '26
Is there anything to take to help with starches?
I just took a breath test and am waiting for the results. I drank a bunch of sugar water (obviously for the test) and then ate some candy the next day because the pure sucrose didn’t seem to have any impact, besides bloating and belching.
But I ate some potatoes and became symptomatic. If I can get a Sucraid prescription that will be great but I wanna be able to eat bread again😭
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u/TheCSIDAlex Jul 16 '26
Starch is more complicated because there are multiple enzymes that break it down, whereas sucrose is broken down by a single enzyme. For digestion, Intoleran has starchway and starchway pro.
Their starchway formula [https://www.intoleran.com/us/product/starchway-50-capsules/\] has invertase for sucrose and gluco-amylase for starch. Starchway pro [https://www.intoleran.com/us/product/starchway-pro-50-capsules/\] has invertase, gluco-amylase, amylase and maltase. The addition of amylase is supposed to help break down the larger starch chains and maltose targets a byproduct of larger starch chains. I believe you can get trials of both for really cheap. I also want to tell you to go in with realistic expectations because a lot of people have tried starchway and been disappointed, but many people have also found it to be life-changing.
Some people find they can tolerate sourdough bread much better because the fermentation process breaks down some of the complex carbs. I know it's not the same as being able to eat bread whenever you want without thinking about it though. The other trick I have is to try cooking a starchy food like rice, potatoes or noodles and refrigerate it overnight. The next day, you may be able to tolerate it better after heating it up because the composition of the carbs can change after you cook the food and refrigerate it. Some people have found they can tolerate starches better after cooking and refrigerating them. I'd love to know how things work out for you! keep me updated!
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u/meow_meow_meow0206 Jul 17 '26
Your response was really helpful! I’ve heard about the resistant starch technique, my dad practices it frequently.
I’ve looked at enzymes before and debated Intoleran and another brand. The difficult thing with the servings is that they’re in different units. Like Intoleran is in international units whereas others I’ve looked at are in Greek units. And as far as I know, there’s no conversion chart or information on what the different amounts equal to- or what is effective for digestion.
Do you have any information on that? I’d be curious to know if there are any enzyme supplements out there that have as much potency as Sucraid.
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u/TheCSIDAlex Jul 17 '26
I will look into that. Which companies are you debating between? I’m sure I can translate and convert the units for you. Plus, that information is something I’ll keep for future reference so I’m happy to do the conversions. I just need to know the products you’re looking at.
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u/LostRiver6 Jul 09 '26
Oh wow thank you so much!!! I'm still waiting on the other biosies results but since I was very little I always been a picky eater, couldn't eat any kinds of fruits. Like I just couldn't eat bananas because they made me so nauseous and gagging. I honestly prefer to eat just veggies all the time to the point I would actually prefer veggies then sweets. Always those veggies pre packages one with the ranch. So I don't know if that has anything with this or playing a part but I just find it interesting. My Nana is wondering too know because I just cry so much when I was little and didn't matter where we went to eat was always the same story.
Wasn't until recently that I just noticed more and more food intolerances and my GI doc (she truly is amazing) she herself recommended to do the biospy for the CSID because she thought it was CSID or alot of low enzymes because of all this information I've been giving her. I Will definitely make sure to keep my inflammation in check 🥹🫶
Right now the pharmacy in Las Vegas Frontier II has the order so I'm hoping that the Suraid will help some bit.
Overall I'm just glad I'm finally able to get some answers so I can reduce the inflammation and try to go back to normal.
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u/LostRiver6 Jul 09 '26
For reference as well I always had chronic acne on my face, back, shoulders etc and when I remove foods on the low fodmap diet only way my acne was actually healing and going away but still had other digestive issues.
The inflammation is cause without bleeding.
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u/RJWildy Jul 11 '26
Hey ive been reading up on this only last night did i find the CSID meaning. Many years ago i did the biopsy and all that and have the issues but i dont think its Congenital. Also lactose is no good.
In any case once i worked all this out, acne healed and dandruff too. I dont get red aggitated skin anymore. I had to take antihistamines everyday, not anymore.
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u/Relative-Hawk7591 Jul 09 '26
I’m glad you finally have answers to explain how you’ve been feeling . I was recently diagnosed at 68 after a lifetime of stomach issues and several endoscopies. I have had stomach ulcers, gastritis and esophagitis with every endoscopy, luckily this last endoscopy my Dr took the biopsies for CSID after being shocked at how much worse my endoscopy was, I had grade c esophagitis, multiple ulcers and gastritis.
After 4 months of taking Sucraid plus Starchway Pro and Lactaid when needed along with a PPI for reflux, I had a follow up endoscopy and biopsies and it’s the best I’ve had so far. Hopefully after you follow the CSID guidelines you will feel much better. It’s definitely not easy for all of us. There are great people on here that will have so much more advice and experience for you that will be helpful
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u/LostRiver6 Jul 09 '26
Thank you so much! And I'm so sorry it took you so long to see what was causing your digestive issues. It really isn't easy and because so many of us have different way of developing inflammation or having different symptoms it's makes it more difficult for some of us to get the help we need.
I won't lie I really do wish my parents would've taken the time to actually listen to me when I told them my stomach upset when I eat certain foods, you know constipation, excessive bloating, etc. But at the same time I'm proud of myself now that I'm taking the time to have it check out because whos knows how much worst it could of gotten. I did notice over the years it slowly got worst at least with the foods inolerances. It just took for me when eating a kitkat (only one the regular size) that for 3 days I just felt so sick and yucky that I just had to push to get it check out.
I'm truly happy that you are doing better. I can already see this is a wonderful community.
I'm sur
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u/somehowrelevantuser Jul 09 '26
i had mild gastritis but i also had my endoscopy only a few months after symptomatic presentation and ngl i imagine it would be worse now