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Sick Since Birth: Celiac And EoE

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Sick Since Birth

Serenity, now 14, had been sick since birth. As you will see, her complications were not all due to celiac. A gluten-free diet, after a celiac diagnosis, became only part of her required healing equation.

Serenity has been under the care of a pediatric gastroenterologist since she was just 5 weeks old. She was put on a feeding tube at that time due to aspiration. This feeding tube was required until she was 6 months old.

By 6 months, Serenity was able to start on thickened liquids and some solids. This continued for the next year. But, as mom shared, she struggled with failure to thrive, constipation, acid reflux, eczema, and gastric dysmotility

Dysmotility is when the strength or coordination of the esophagus, stomach or intestinesmuscles do not work as they should.

Tested For Celiac

Serenity was tested for celiac when she was 15 months old. Blood test result: positive. The biopsy, however, was negative. Serenity continued to have endoscopies and flexible sigmoidoscopies every 3 months over the next year or so. She was not put on a gluten-free diet at this point, however, since the biopsies were consistently negative.

Besides a pediatric gastroenterologist, Serenity also required the care of other specialists. The allergist, nutritionist, and geneticist that Serenity required also helped mom, supporting her as she continued to face all her daughter’s health  challenges.

The g-tube was needed again, however, due to severe failure to thrive and due to severe food allergies. This is how she was fed until she was 3. By this time, Serenity became so extremely sick that she was hospitalized for a month. 

At the age of 3, she weighed only 19 pounds and was only 26 inches tall. While in the hospital, in order to receive nutrition, she received TPN, (Total Parenteral Nutrition), which is given intravenously. 

Further Testing – Further Answers

Serenity’s mom, Charity, demanded a colonoscopy. She needed answers, understandably. Her own mother had recently been diagnosed with Crohns disease. The result from the colonoscopy was that Serenity was diagnosed positive for celiac and EoE, (Eosinophilic Esophagitis). 

Eosinophilic Esophagitis (EoE) is

“a chronic, allergic inflammatory disease of the esophagus (the tube connecting the mouth to the stomach). It occurs when a type of white blood cell, the eosinophil, accumulates in the esophagus and persists despite acid-blocking medicine. The elevated number of eosinophils cause injury and inflammation to the esophagus. This damage may make eating difficult or uncomfortable, potentially resulting in poor growth, chronic pain, and/or difficulty swallowing.”

According to this article in Allergic Living 2 percent of those with EoE also have celiac disease. 

Serenity continued to be fed via TPN for 3 months. She was then able to return to the g-tube, which is how she continued to be fed until she was 8 years old. Mom shared that they were able to gradually and slowly introduce foods back to her diet between age  6 and 8. Allergy tests, however, found her allergic to most foods, so this was very difficult

Update: A Much Healthier Girl!

At age 14, Serenity is now 4’10” and 108 pounds. Mom is happy to report that she is much healthier and more energetic than ever. 

Serenity enjoys soccer, camping, off-roading, driving her grandpa’s quad, and anything active. She has obviously come a very long way. I can only imagine the joy of watching her enjoy life.

Mom shared, “She doesn’t get sick as often, and when she does it doesn’t automatically put her in the hospital the way it used to.”

Continued Monitoring

Serenity receives bloodwork every 6 months and a scope annually. Both celiac and EoE are monitored closely.  She’s been strict with being gluten free since her celiac diagnosis at age 3.

She has recently been experiencing gastric symptoms. Instead of waiting the full year, they decided to go ahead and scope her early to see what might be going on. They are currently waiting on biopsy results. 

Besides flare ups from celiac, they also look for flare ups from the EoE. 

An Expanded Diet

Serenity has outgrown most of her food allergies, thank goodness! Of course, she requires everything to be gluten free, but the EoE restricts her diet even further. Mom shared, “Just like with celiac, the only real treatment is to avoid the allergens. If she is exposed, she will have a flare up.”

The foods that she is still allergic to are nuts, dairy, fish, shellfish, and anything spicy. 

As long as its gluten free, however, Serenity is able to enjoy some teen favorites: pizza, chicken nuggets, chocolate. And this is certainly a celebration!

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