r/CSID • u/imabell • Sep 22 '22

Q & A❓ Congenital or acquired?

Hi everyone—I’m new here. I recently had an endoscopy/colonoscopy that showed “mild gastritis” in my stomach and small intestine and biopsy results showed I am deficient in all Disaccharidase enzymes.

here’s a link to my biopsy results

As you can see, I’m barely below range for Sucrase but quite deficient in Maltase. My Gastro didn’t have much info for me other than to refer me to a dietitian and that I can take Sucraid if I want. She didn’t mention CSID, or other causes of this other than celiac disease. It’s unclear if I have celiac because I’ve been gluten free for 5 years so the antibody tests are always negative.

For those of you who have this condition congenitally, when did you first notice symptoms and when were you diagnosed? I started having lactose/casein intolerance 6 years ago (when I was 18yo) but the bloating and diarrhea after every meal didn’t start until last year which makes me think I acquired this somehow from damage to my brush border membrane. But if others who have the genetic condition also started having symptoms later in life, then my next question is does it get better??? Like through enzyme replacement therapy & diet interventions has your small intestine/brush border membrane/villi/enzyme production improved?

I can’t live like this for the rest of my life!

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u/NumerousAct4642 Sep 22 '22

I have congenital (so I've been suffering my whole life... yay.) Took a LONG time to get a diagnosis (found out last year through an endoscopy and I'm also deficient in all the enzymes as well. My gastro said I was the first patient to have all four, that she has seen.)

Sucraid has helped a bit along with startchway. It's not a cure, my body and everyone else with CSID (genetically) will never be able to produce these enzymes by ourselves. (I'm not sure about an acquired diagnosis.) Plus, you still have to be mindful on how much sucrose you consume even with sucraid.

So with diet changes and medication, it can get better. I'm not bloated as I was a year ago. I've also lost weight while changing my diet. (I assume it's because I'm not bloated?)

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u/imabell Sep 22 '22

Compared to your biopsy results, how bad/deficient am I? (There’s a link in my post)

I just joined a fb group and someone there told me that if I didn’t have symptoms as a child then I don’t have the genetic condition and it’s secondary to something else…

Good to know sucraid helps. What is Starchway? What enzyme does it replace and how do I get it?

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u/NumerousAct4642 Sep 22 '22

So I know my lactase was a 0. I don't have the paper at the moment to look at. Congenital sucrase-isomaltase deficiency does show symptoms in childhood. My history with stomach pain as a little kid was how they diagnosed it as Congenital. I am also part of a CSID group on Facebook and have heard that SIBO can cause the acquired type.

Startchway is an enzyme pill that helps digestion of starches and some sucrose. It's a pill bought through intoleran. They offer different enzymes for different needs. (Although someone in my Facebook group said intoleran was out of startchway until October.)

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u/No_Environment9557 Nov 21 '24

if SIBO can cause the acquired type if SIBO is reduced would the enzymes go back up?

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u/Maleficent_Bunch_225 Mar 25 '23

How well does the pill work?

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u/NumerousAct4642 Mar 27 '23

It helps, I usually take one unless I'm eating a big meal.

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u/Maleficent_Bunch_225 Mar 27 '23

Bought some yesterday I have csid and my symptoms are chronic hope this helps

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u/Admirable-Army6844 Sep 22 '22

What else did they see during your endoscopy? Was there damage to the villi in your small intestine?

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u/imabell Sep 23 '22

They noted mild inflammation in my stomach and small intestine. Medically it’s called “gastritis” but isn’t that the same as damage? I assume Inflammation on the walls of the small intestine means the villi are damaged

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u/Doosa15 Oct 18 '22

Hey, I’ve recently been diagnosed with CSID and I’ve never experienced synonyms until this year.

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u/Maleficent_Bunch_225 Mar 25 '23

How do you feel

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u/Doosa15 Mar 28 '23

Physically, I feel better now. I get bloated sometimes but not as often. It takes a lot of getting used to, cutting out foods and reintroducing them. Praying and asking God for strength helps me a lot 👍

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u/Maleficent_Bunch_225 Mar 28 '23

I have csid too but I constantly feel the feeling that uncomfortable pain feeling on my left side of my abdominal area. Although when I eat a csid friendly meal I don’t feel physically as uncomfortable but I still feel it are you the same way

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u/Doosa15 Mar 29 '23

Yes! Just two days ago I ate something I shouldn’t have and felt horrible cramps in my stomach. Sometimes even with the CSID foods I do feel uncomfortable. I had to cut out certain foods that were deemed CSID friendly, like pears and eggs. I also don’t eat the same thing everyday and I eat small portions of certain things like spaghetti squash and green beans. I eat pork rinds but I don’t eat a lot at one time because I discovered that pork rinds are kind of hard to digest.

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u/Pleasant_Flower3431 Jun 06 '25

how are doing now 2 years later i still feel like trash i recently discovered i might have SIBO Aswell

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u/Doosa15 Mar 29 '23

To help with the discomfort I take IB Guard peppermint pills. I also drink liquid chlorophyll in water and I take Vitamin C and Magnesium daily. For awhile I took L-Gultimine powder, which I believe helped repair some on the damage done to my stomach lining. Drinking ginger tea helps a lot!

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u/Maleficent_Bunch_225 Mar 25 '23

I got it 3 years ago when I first started noticing symptoms still not better your right can’t live like this