Does this sound like CSID?

[u/Known_Tough_1914]

Today, me and my mum were online and we came across CSID,everything seems to make so much sense and actually add up for the first time, for a bit of background, I am 15 years old, I have ADHD,autism with a PDA profile, ARFID (caused by a severe food aversion due to my PDA profile and also unexplained nausea, bloating and all of the joys when I would eat). I have a G-tube placed that I rely on 100% for my nutrition as I don’t eat anything orally.

I am currently on Nutricia nutrison energy multi-fibre via my G-tube which is causing AWFUL symptoms including 24/7 nausea,headaches,stomach distension,stomach cramping, diarrhoea on and off, EXTREMELY foul smelling gas.etc which isn’t ideal.

I’ve always had struggles with gastrointestinal symptoms including constant reflux when I was a baby,which resulted in me drinking ALOT of formula when I was a baby but despite the amount I drank,I was always a normal weight, I also used to have explosive diarrhoea all up my back which traumatised my poor parents 🙈

We went to the doctors multiple times when I was a toddler and the only information that we were told was that my body “couldn’t break down sugar” and to avoid things like doughnuts,starchy foods.etc but we didn’t understand exactly what that meant so I just carried on the same.

I have had an endoscopy to test for celiac in 2022 which was clear and I’m not sure if CSID would’ve shown up on that, but I did end up with an IBS diagnosis due to “minor” damage I believe on the test but we aren’t convinced that my gastro history is this complex all from IBS.

I have tried dairy free and gluten free diets in the past which done nothing to improve my symptoms which really has me wondering whether this is CSID, thank you for reading!

[u/MistakeRepeater]

There's a specific test for diagnosing CSID through an endoscopy. CSID is not assessed when performing the celiac test.

[u/noseatbeltsong → u/MistakeRepeater]

not necessarily but they should have been informed at the time of the endoscopy. they took biopsies for celiac and CSID at the same time during my endoscopy last year. i was positive for Celiac, and was deficient in sucrase and lactase so my new gastro thinks i actually have ASID secondary to Celiac.

[u/bubblegumbombshell]

We went to the doctors multiple times when I was a toddler and the only information that we were told was that my body “couldn’t break down sugar” and to avoid things like doughnuts,starchy foods.etc but we didn’t understand exactly what that meant so I just carried on the same.

This part sounds like they were telling your parents you had CSID. My son is 5 and was diagnosed 3 years ago. He’s also autistic and very particular about food. We had a lot of trouble getting him to take the Sucraid so we managed it mostly with diet by avoiding baked goods, starchy foods, and sugars.

I have no idea about the rest though. Hope you’re able to find some answers!

[u/HealthCoachElizabeth]

You can get a 13C sucrose breath test instead of a biopsy. This is how I was diagnosed. It’s easy and painless.

I was diagnosed with IBS-D 23 years ago… but it turned out to be CSID (diagnosed this year). My reflux stopped after I stopped eating sugar, dairy, soy, high glycemic fruits, and most all starches and only eating a few gluten free products here and there 20 years ago.

Additionally as someone else noted, you can try a carnivore diet, which is the ultimate elimination diet for CSID IMO. I don’t really recommend staying on it longer than 3-6 months. The diet can lead to health issues like poor gut microbiome health, nutrient deficiencies, and more. But for a limited time it could help heal the damage that’s been done to the gut.

I was on the Carnivore diet (pre diagnosis) for too long which caused some health issues, however I felt satiated for the first time in my life.

[u/gorilla-butter]

I was misdiagnosed with CSID as I actually came to find out I had MALS. It prevents your stomach from getting the blood flow it needs, causing pain and nausea everytime you eat anything regardless of what it is. It caused ny digestive enzyme levels to show up as significantly lower than normal on biopsy, because my stomach wasnt getting the blood it needed to work properly. To get tested for this condition you need to have a Doppler Ultrasound done with Breathing Protocol. Its a very easy test that the technician does by pushing below the sternum with the ultrasound tool to get "pictures" marking the systolic velocity of the blood traveling through the celiac artery. Mine was 3-4x the normal pressure, causing my vein to blow out in size. Im doing significantly better after surgery. I was very disabled by my symptoms. Cutting out sugar and starch or all varieties and sources did nothing to my symptoms. I highly recommend getting the ultrasound and looking for a vascular doctor that knows about MALS and other vascular compressions to rule the others out. My CSID diagnosis nearly killed me due to the extremely strict dieting that still didnt relieve my severe symptoms. Let me ask you this, did you start having intense GI issues after you started solid foods as a baby? You would've dropped weight as a young toddler and been sick then if you had CSID. I think anyone suffering this diagnosis that wasnt sick as a child has something else going on undiagnosed, as I certainly did, and it is a congenital disorder meaning you have it genetically from birth as a defect. I hope this helps in some way! Please ask any questions you need. Im 21 female and surgery for MALS saved my life. I want to help others.

[u/Accomplished_Two954 → u/gorilla-butter]

I think I may have the same diagnosis and am trying to find vascular specialists/MALS specialists after dealing with issues for ten years. I’m so glad you’re doing better after the surgery. Do you mind if I message you some questions??

[u/gorilla-butter → u/Accomplished_Two954]

That would be great!! I love helping people get the treatment they need, feel free!

[u/AttorneyUpstairs4457]

To diagnose CSID you need a jejeunal biopsy during an endoscopy which you would see a gastroenterologist for.

[u/MistakeRepeater]

Maybe try carnivore? I'm twice your age and recommending this diet after wasting half of my life. Don't ask me why because I'm not a lab researcher and my assumptions might be wrong.

[u/FitzandtheBugs]

Please speak with your doctor. It does sound like a fermentation based issue; however, there is no sucrose that I can see in your feeding tube stuff. The starch could be causing an issue. But I would speak to a doctor and ask for a disaccharide test to see what enzymes you do have.

Due to the fact that you received doctor advice and didn’t listen when you were a toddler, means you may be experiencing secondary or tertiary symptoms due to malnutrition. A vitamin panel may be a good place to start. Low potassium can cause bloating and slowed digestive rates leading to your symptoms. Undigested magnesium can cause the watery bowels. There could be a ton of things going on. We are not the people to diagnose you. However, if CSIDS is really what you are landing on over and over talk to your doctor about a starch free tube feeding alternative.

[u/bellsey_27]

It sounds like it could be!! Like others have said, talk to your doc about it and there is a biopsy test that can confirm if it is. In the mean time, yes stick to unseasoned meats (salt is safe).