food restrictions

Hi everyone. I’m new here. I’ve been battling a really challenging flare recently. I’m 25 years old and I was diagnosed with Crohns when I was 7 years old. I have been really lucky growing up, going through very few flares until I turned 20. Ever since then I have had at least one flare every year, constantly needing IV fluids& meds, constant body aches and fatigue. I know my nutrition intake hasn’t helped but the thought alone of most foods, and now all meats, makes me nauseous. When I do work up the courage to eat any meat, it comes up within an hour. I also have to stay away from beans and seeds, they tend to upset my stomach too. Please offer any suggestions you may have for meals that will help me get through. Sometimes having no one around who understands makes me feel crazy or like an “annoying picky eater”. Feeling so overwhelmed these days. #CrohnsDisease #CrohnsFlare #FoodRestrictions

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.

#EatingDisorders One of the things I'm having the most trouble with in recovery ( aside from eating is wearing pants with a waistband. I'm fine in my yoga pants or workout clothes but I can't wear regular pants without "feeling" that waistband or my thighs in them. It makes me incredibly anxious all day. I know logically that my pants fit and are not too tight but they feel tight. When I was in the depths of my ED I weighed under 100 and used to have to pin my pants to stay on and now I don't have too and it is freaking me out. The last time I was this anxious I ended up in the psyche ward after a suicide attempt. I don't know why this is such an issue for me. Thanks for any insight.

To me this is good. Falling back into the old routines. The eating disordered ones anyway. I suppose it’s not great, but to me, this is good. I’m getting somewhere again. I’m being productive. Losing weight is good. I miss my scale. I won’t be traveling without it again.