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From Negative Celiac Tests to Positive
Declan was first tested for celiac approximately three years ago, at age two. Results from both blood test and biopsy: negative. Follow-up tests this summer, however, came back with different results. The years in between included a battery of other tests, trying to discover just what was wrong. He wasn’t growing, but his health struggles were much more than a growth delay. And through continued testing, it was discovered that celiac wasn’t the only cause.
An explanation for Declan’s size, just before he was diagnosed with celiac, was that he had a delayed bone age. I did a google search on this term, as well as growth delay. In skimming through the first handful of articles that came up, the hunt for celiac to be listed as one possible cause became a Where’s Waldo search. But Waldo was missing.
Do a search for ‘growth delay and celiac disease,’ however, and you will discover article after article that discusses this connection.
From Nursing Constantly to Refusing Bottles and Food
Declan’s symptoms began before his first birthday, when solid food was introduced. It wasn’t long before he started refusing bottles. He refused solid foods, and he stopped growing. “He quickly fell off the growth charts,” Lindsay said.
Prior to refusing food, however, he nursed constantly. “We thought he’d be huge,” said mom.
Growth Delay: Tests (And More Tests)
As Declan’s growth fell further and further behind, more and more tests were ordered. Genetic testing. Endoscopy. Feeding evaluations. Scans. Swallow studies. Cystic fibrosis.
Negative tests meant a lack of answers. Declan’s parents became desperate. “We tried a gluten-free diet for about a year,” mom said. “But not much came of it at that point.”
A Second Endocrinologist
Needing answers they weren’t receiving, they moved on to another physician. The second endocrinologist determined that Declan had a “delayed bone age.” Thinking that was the answer, gluten free went out the window and he was put back on a regular diet.
When he returned to a regular diet, however, he experienced increased digestive issues and increased bowel movements per day.
Mom also shared that Declan has Apraxia of speech, a neurological disorder that impacts motor planning and processing. “Getting Declan to tell us exactly what bothered him wasn’t possible. He did not have words until he was three,” Lindsay shared.
He is currently receiving speech therapy.
On to a Third Endocrinologist and Second Gastroenterologist
More tests. More bloodwork. More negative results.
“At age 4 and a half we were ready to give up and accept what everyone told us; he was a late bloomer and would eventually catch up,” mom shared.
This new endocrinologist ran a STIM test to check Declan’s production of growth hormone. He also included follow-up blood work, including another celiac panel. The STIM test results were normal. The celiac test, however, came back positive.
Back to gluten free. That was this summer, June 2019.
A Much Welcomed Answer
Declan’s mom and dad were so excited to have an answer that providing gluten free was accepted with open arms. “Declan’s eating habits were so awful that we didn’t have much to lose by going gluten free,” Lindsay said. “Yes, it’s more expensive and we did replace several kitchen utensils and prep items, but we were desperate for some normalcy.”
After one month gluten free, Declan was finally on a growth chart. At 30 pounds, at age 5, he was in the first percentile for weight. And after three months gluten free, Declan has grown 2 inches and gained 2 pounds.
He was also finally potty trained! After years of trying, this happened after just one month gluten free.
Eating has improved, but remains a struggle, Lindsay said. Declan prefers several small snacks, refusing regular meals.
When Food Is The Prescription
Mom shared that they meal plan every meal for every week, but its not as difficult as she expected. She focuses on her son’s needs with a positive mindset.
As for dining out, she said, “We don’t do it. We’re not at all confident enough yet to try restaurants, though we did visit one café and bakery that is a 100% dedicated gluten-free facility- amazing!
“When we go to parties or barbecues we travel with a rolling cooler of food for our son.”
Improvements Recognized By Teachers
“Upon returning to school this year, all of Declan‘s teachers say he is like a new kid,” Lindsay shared. They noticed the physical changes as well as personality changes.
And what are they noticing? Declan expresses more confidence. He is more verbal. His focus in general has increased. And this was after just two months gluten free.
He continues to receive therapy for his apraxia of speech. I’m hoping we can share a follow-up report in a year or two about Declan’s progress.
Not Just Celiac (EoE)
Declan’s answer isn’t just in celiac and being gluten free, however. He also tested positive for EoE.
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.”
Declan’s EoE diagnosis is very new for the family. Mom shared that they recently met with the EoE team.
In order to discover what food’s are Declan’s allergy triggers, he will be doing an elimination diet. Gluten free will always be required, because he has celiac, but in order to bring his Eosinophil levels down, they need to discover what is triggering his allergic reactions.
First up: dairy. They will keep dairy out of his diet for the next ten weeks. This will be followed by a scope in order to determine if removing dairy brings improvements.
“At this point we really hope dairy is the trigger,” Lindsay said. “The allergist and nutritionist we met with told us that if it’s not dairy or wheat, it becomes a lot more complicated to figure out the trigger.”
Dairy, unfortunately, is among Declan’s favorite foods. He loves cheese and yogurt. He also enjoys blueberries, mashed potatoes, and eggs. Fingers crossed that none of these other foods will be on his list of triggers.
Energy To Be A Kid
With answers coming together and with knowing what to do for Declan’s best health, he’s able to get on with the job of being a kid.
Lindsay shared that, “Declan loves anything and everything that has to do with being outside. He loves riding his bike and doing yard work with his dad. He is starting soccer this fall. We always hesitated involving him in sports because of his small size. He’s a very tough little boy though.”
Keep up the great work Declan!