csid

Hi, my name is Zoe and the reason why I wanted to join is because I’ve had a diagnosis of CSID (Congenital sucrase-isomaltase Deficiency) for almost a decade now while also being a chronic illness advocate as well.

#MightyTogether #Anxiety #Depression #Migraine #RareDisease #csid

What is CSID?

Congenital sucrase-isomaltase deficiency (CSID) is a genetic disorder that affects a person’s ability to digest certain sugars.

What sugars?

Sucrose (a sugar found in fruits, and also known as table sugar) and maltose (the sugar found in grains)

What happens if you eat foods with high levels of starch/sugars?

After ingestion of sucrose or maltose, an affected person will typically experience:

Bloating, abdominal pain ("stomach ache"), and malabsorption of other nutrients. Other symptoms may include nausea, vomiting, or reflux-like symptoms.

In some children, these digestive problems can lead to failure to gain weight and grow at the expected rate (failure to thrive) and malnutrition.

(In others with CSID the symptoms may mistakenly be thought due to something else, such as functional GI disorders like irritable bowel syndrome with diarrhea (IBS-D) or dyspepsia.)

How common is it?

“The prevalence of CSID is still unknown and a subject of study and debate. Estimates of prevalence in people of European descent generally range from 1 in 500 to 1 in 2,000, and fewer African Americans are thought to be affected. The condition is much more prevalent in the indigenous populations of Greenland, Alaska, and Canada, whereas many as 1 in 10 to 1 in 30 people may be affected.

Nevertheless, more recent studies suggest that CSID may be more common than currently estimated. It is possible that some people remain undiagnosed and that the incidence is higher.”

What don’t you have?

Basically two types of enzymes that break down sugars (+starch.) This enzyme is found in the small intestine and is involved in the digestion of sugar and starch. It is responsible for breaking down sucrose and maltose into their simple sugar components. These simple sugars are then absorbed by the small intestine.

 “Gastrointestinal symptoms may differ among infants, children, and adults affected by this enzyme deficiency.” Keep this in mind if you look at the links at the end, I do not have all of the symptoms even some of the most common ones I do not have, but I do have a lot.

 Eating foods I’m not supposed to can lead to:

Acne

Abdominal Pains

Headaches

Exhaustion 

Dehydration

Slowing down both physically and mentally (takes longer to think about things)

Mood Swings (mostly negative, irritability is high)

Dry Skin

Even More Serious Issues Include:

Eventual Cancer

Kidney Stones

I have personally been hospitalized as a baby/toddler because I was dehydrated because I was eating foods high in starch and sucrose (sugar). We were not aware of this (CSID) at the time. 

Also in elementary school I got super sick from it and ended up with really bad upper respiratory problems for a while.

#sucroseintolerance

#csid

I have been on The Mighty for a few months. I haven’t heard about my condition from anyone else. Anybody else a CSID’er?! I know it’s a rare condition that doesn’t get much attention and hardly diagnosed. I’m a part of a support group page on Facebook. It is very helpful and we would love to have you! I was lost when I was first diagnosed. I am still but I have the support of others like me. CSID Cares page only tells you so much 😂 #csid #Rare #ChronicIllness 🦓