Beth Hillson Part II: Following Your Gut

By now, I'm sure you all have seen my post, "Beth Hillson Part I - A Gluten-Free Pioneer Living Well".  So here we are, Continuing with Part II!

Beth discusses Jeremy's diagnosis in her new book, "A Complete Guide to Living Well Gluten Free: Everything You Need to Know To Go From Surviving to Thriving".  Jeremy's diagnosis wasn't easy, needless to say, especially when most of his symptoms were behavioral. Below, I've taken some excerpts from Chapter 1 about Jeremy's journey to diagnosis.

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Beth was concerned about her son as a toddler, not paying attention, flopping from one piece of furniture to another, austistic-like manner and he also had difficulty relating to school mates.

When Jeremy was born, his pediatrician told Beth that the likelihood of him having celiac disease was not very high. "Today we know that 1 in 22 first degree relatives are likely to have the disease."

"Looking back, I am surprised I did not consider the obvious culprit. I never suspected gluten."

"Like most people, I believed celiac disease was a failure to thrive issue, whereas my son was in the 99th percentile for weight and height. Yet I sensed his behavior deteriorating throughout the day as he consumed more gluten and dairy." 

Beth came across a book about elimination diets and it discussed the connection between food allergies and behavior. Since the gluten free diet was the one Beth was familiar and with, she started with eliminating gluten first. 

After Jeremy's teacher noticed a significant change in Jeremy's behavior after returning to school from winter break and eating gluten-free, Beth knew she was on to something.  "As a calmer, happier child began to emerge, I wondered whether I was on to something. At the end of two weeks, I put him back on a regular, wheat-filled diet. I knew the diagnosis would only be circumstantial unless I had him tested."

A week later, Beth was at school, and Jeremy's teacher said, "You've taken him off that diet, haven't you?" She said, "I can see the difference." Beth knew she wasn't alone on seeing the transformation of Jeremy's behavior when he was off gluten.

Now, the frustrating part...getting a doctor to test him. Beth took Jeremy to a pediatric gastroenterologist and he ran two tests that were inconclusive. Beth asked him to run more specific tests to celiac, but the doctor didn't recommend it. He said, "He's growing normally and he's healthy."

Beth knew Jeremy needed the tests done. She told the doctor that maybe she didn't have him eating enough gluten and if he could just write the tests up, she would wait until the summer to have Jeremy tested. 

Well, she didn't wait. The blood tests came back positive for celiac. And the same GI doctor said, "Well, you give me no choice with the elevated tests and the fact you have it, I have to scope him. But I have to tell you there is not a one in a million chance he has this disease."

I love what Beth said next, "Humor me."

After the endoscope, the doctor came out to give an update, or an apology that is! "I owe you an apology," he said. "Your son's intestine was 'scalloped; I could see the damage with my naked eye."

From then on, the hospital changed its protocol on the celiac profile. In addition, it began working with the ADHD clinic to screen their patients for celiac disease well.

Following her gut is just what Beth did when it came to Jeremy's health and behavior. As parents, we can sense something's not right with our children, it's in our gut, we just know! And sometimes, we have to go against what others may think, to get the answers for our children.

Quite an interesting story! It goes to show, that behavior is a HUGE part of untreated celiac disease. Thank you Beth for sharing Jeremy's story with us.

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Stay tuned, Beth Hillson Part III - Raising Jeremy - Q &A