Living with CSID

How One Woman is Pushing Her Limits with a Rare Disorder

By Amanda Lillian 

Mary Virginia Ireland was 28 when she was diagnosed with CSID (congenital sucrase-isomaltase deficiency), a rare GI-disorder that impacts only .02 North Americans, according to rarediseases.org. Ireland shares her story on learning to live with CSID, while leaning on her faith, family, and friends. 

Mary Virginia’s Story

Photo of Mary Virginia smiling. Her brown hair is blowing in the wind and she’s wearing gold hoops and a blazer.

Mary Virginia Ireland was walking down the streets of New York City, taking in the families who sat outside, enjoying a meal, and the friends who laughed, leaning in close over a cocktail. For most people, it would’ve been like any other day, but for Ireland that day was different. In fact, for the next few days and weeks, simple things – like grocery shopping and even seeing people at restaurants – would spur a wave of deep emotions. Ireland, 28, had recently been diagnosed with CSID, which according to the IFFGD affects a person’s ability to digest certain sugars. People with this condition cannot break down the sugars sucrose and maltose, and other compounds made from simple sugar molecules.”

“I bawled, it was agonizing crying,” said Ireland of the diagnosis, who was born in Atlanta, GA, but spent most of her childhood years in Winston-Salem, NC. “I was so angry and thought no one else has to deal with this… At first, I said this emotion is wrong. I should be thankful for everything.”

Ireland was diagnosed with CSID in May 2021 but did not get treatment or exhibit symptoms enough to be concerned until April 2022. April was when Ireland started seeking medicine and chatting more with her doctor. Additionally, Ireland believed she might have celiac disease because of her dad’s diagnosis and her own research. She went to a City MD for testing for celiac disease, but they didn’t test for that and recommend she see a gastroenterologist. Her gastroenterologist tested Ireland for celiac disease, and she also had a biopsy, endoscopy, and other standard GI tests. A few weeks later, her doctor who she credits as a specialist with a phenomenal bedside manner, said she had CSID. 

To relieve the symptoms, Ireland receives a bottle of live enzymes that is administered via oral syringes and mixed with 3 oz of water. “As the enzymes must remain cold, I use an insulin pack to carry with me.” She ensures the water is cold as warm liquid would kill the enzyme. Ireland sips the enzyme-water mixture throughout the meal, but has learned through her research that some people take it before eating. She’ll also have over-the-counter medication at the ready such as ‘IB Guard’ and ‘Starch Away.’

“It [the medication] is shipped from a special pharmacy,” said Ireland, whose medication is upwards of $14,000 per month. “I went through insurance and had it covered and it was a battle. I take everything I eat now with the syringes, but since taking sucraid my symptoms has lessened and made CSID more manageable.”

Coping, Gratitude, and Pushing Her Limits

If you were to Google CSID, you’ll get about two pages of results, and then the search will point to other acronyms for CSID. It was one of the first things that Ireland noticed about CSID – there wasn’t a lot on the internet, which meant finding and meeting people who were living with the disorder might pose more of a challenge. 

“I found support groups through Facebook and didn’t know anyone who had it in real life,” said Ireland. “My community of support widened as I talked about it with friends who were constantly rooting for me and checking in.”

Ireland also explained that for many people who are diagnosed with CSID, they are diagnosed at birth or earlier in life. She also tapped into Facebook groups where people and parents shared recipes since living with the disorder can be incredibly restrictive in terms of eating. Right now, there are about 15-20 foods that Ireland can eat without symptoms including egg whites, green beans, zucchini, spaghetti squash, chia and hemp seeds, chomps, ‘flackers’ (flax seed crackers), and turkey breast although she has to be careful with deli meats. Even so, some of her safe foods can cause flare-ups from time to time. Sometimes it’s a guessing game!

Additionally, Ireland is currently working with a nutritionist who has encouraged her to push the limits of what she can eat without the fear of being sick by getting to a pain level between 1-3 to see what she can tolerate. Ireland can also have strawberries in small doses, Smarties which contain dextrose and other chalkier or Willy Wonka candies like Runts or Bottle Caps. Additionally, if Ireland takes her medication, she can even have her favorite – a New York bagel every once in a while.

While Ireland is living with her body’s physical changes including significant weight loss, CSID has also impacted her emotionally and mentally. 

“As a woman, I don’t recognize my body anymore,” said Ireland who currently lives in Manhattan. “I lost significant amounts of weight due to body inability to process. I’ve also lost hair, and occasionally have what I call CSID rashes.”

With her struggles, Ireland has still faced CSID head on. While it’s been a “mind game,” she has learned to shift her focus to what she can control, finding joy in the moment, and leaning on her faith, friends, and family during the hard moments.

“You’re not alone in whatever the struggle is whether it’s social, professionalism or health,” said Ireland. “People have more strength in them than they realize.”

Advice to People Who Have Friends and Family Living with a Chronic Illness

Now that Ireland has been living with CSID for a little while, she acknowledges that so many of our social experiences, especially in big cities like New York City, revolve around food like birthdays, holidays, happy hours, and other celebratory events. 

“Two things I will ask of my friends is ‘Don’t ask can Mary Virginia eat here,” said Ireland, the Mercer University and University of Alabama alumna. “We will go, and I will figure it out. If not, I will go and enjoy the experience. I ask that you not constantly ask, ‘Are you ok?’ I will let you know…I want to be included and not feel exhausted that my friends had to take care of me.”

Ireland is grateful for her friends who want to try new recipes and meet her with understanding when she can’t attend a social gathering and keep things normal. For the on-lookers who may see her out in a restaurant with her travel pack with syringes and enzymes at a restaurant and people are constantly staring, Ireland says she’s happy to answer questions, but wants people to respect her boundaries and not push her to “just try one bite” of food. 

Mary Virginia walking in the streets of New York with cars behind her. She is wearing a hat, white dress, and tall boots.

Mary Virginia continues to be an advocate for young people living with CSID, an illness that has symptoms that overlaps with other GI issues and is hoping others can find relief. 

Lastly, if you hear Ireland over the phone, she’s positive, passionate, and seems to have a fervor for helping others, most notably, making an impact through sharing her own vulnerabilities, and spreading light wherever she goes.

“My purpose is to bring joy and to be a light,” said Ireland. “For the people struggling with CSID and emotions around shamefulness and guilt… I wanted to be able to use my own story for others to be heard.”
For more information about CSID, visit CSIDCares.org.