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Celiac Screening: When Will It Get More Respect?

Celiac Screening: Looking For A Little Respect Here

If it was up to me, every child would receive a celiac screening some time before their first year of school.  *(I am not a medical professional. I’m not a celiac researcher. This is not advice.) Newborns receive dozens of health screenings (no, I’m not suggesting newborns be screened for celiac). More screenings are added as time goes on (depending on age and gender). 

Screenings. Some are just routine. I wonder—when will we screen for something that affects 1:100 of us? – especially when over 80% are still un-diagnosed.  (More stats from The University of Chicago Celiac Center.)

So WHY Isn't Testing and Screening More Common?

As common as celiac is, WHY isn’t testing routine?!  There are far less common diseases that are screened for far more frequently. Or how about education so symptoms can be recognized and testing done more timely? 

Since my celiac diagnosis (in the fall of 2000), and since learning that celiac affects 1% of us, I’ve been an advocate for awareness. And I question how so many people continue to live with this disease for months, years, (and decades) before being tested. 

I wonder how many more would be recognized if celiac screening became routine. When I pose this question, the answer always comes down to “money.” 

hmmmm  If we compare the cost of a lifetime of illness to the cost of testing, and then a lifetime of health, I’m thinking the cost weighs heavier on the forty years of illness.  But I’m not an expert.

The Joy Of A Birth - The Fear Of Something Being Wrong

We were privileged to discover the number of newborn screenings that are conducted when my first grandson was born in 2015. 

LOVE-this-boy! The love we feel for our children and our grandchildren is so much it hurts. When there’s a problem (or potential problem) we can lose focus on anything else going on in the world at the moment.

Less Than A Week Old - Questioning His Health

During his first follow-up visit to the pediatrician, when he was just a few days old, my daughter was told my grandson’s newborn screenings suggested a potential health issue. The screening suggested that he could have a fatty acid oxidation disorder. She was told NOT to let him go more than four hours without a feeding, preferably no longer than three hours. And almost in the same breath as “DON’T let him go more than four hours without a feeding,” she was told, “But don’t worry about it, he probably doesn’t have it.”

And she did her best not to worry. But this was her tiny new baby. Telling her not to worry was like telling her not to breathe.

An appointment was then set with a specialist for genetic testing.

During this appointment, the specialist emphasized, “Actually, don’t let him go more than two or three hours without a feeding.” And again, “But don’t let it stress you out. He probably doesn’t have it.”

What mom or dad or grandparent isn’t going to be concerned?!

“Oh, and by the way, the results won’t be in for two to three weeks.”

Apparently IF he had this disorder, it could cause his blood sugar to plummet (and he might not wake up). Besides the ultimate fear of losing her new baby, my daughter was told that this disorder could lead to many other major health concerns. For those who DO have it, knowing is life saving. So yes, this screening is important.

Sleep Deprived Mommy

This poor new mom (my daughter) had to set her alarm for every two hours. She was doing a pretty good job at not letting herself get too stressed out, (outwardly, anyway). This is a rare disorder. Most positive screenings are false positive. But how does it not affect a person?

And how the heck could she sleep? As soon as the baby was done nursing, she’d set her alarm for two hours. And when it went off, she first had to struggle to wake herself up, then him, and then encourage him to eat even if he wasn’t ready. The hope was that he’d go right back to sleep. And if he went back to sleep, the hope was that she would too, since her alarm would be waking her in another two hours. Of course, it doesn’t always work out that way.

*(To give mom and dad a break one night, my daughter spent the night at my house. I made myself a pot of coffee and committed to stay up all night with this sweet little baby. I wanted her to be able to relax, knowing I was on guard. And both parents desperately needed some solid sleep. Dad slept straight through at home. Mom slept a solid nine hours at my house, and I got to snuggle with my grand-boy).

Thankfully, the results to his genetic tests didn’t take three weeks. The results didn’t even take two weeks. My daughter got the call after just one week. Negative. “Let him sleep,” she was told. Heavy sigh of relief all around.

Newborns Receive Dozens Of Screenings

Babies receive a slew of screenings. And for good reason. 

Because of what we went through with my grandson, I learned that newborns (in Illinois) are screened for sixty-three conditions. 63!! 

According to the Illinois Department of Public Health:  

Early detection, diagnosis and treatment of these conditions can prevent death or disability and enable children to reach their full potential.

Many of these conditions are rare. But detection is critical.  
Fatty Acid Oxidation Disorder–1:20,000

When And Where Will Celiac Screening Fit In?

With the obvious purpose for screenings being to “save and improve lives,” how about adding celiac, a relatively common genetic autoimmune disorder? Look at this celiac study released by the NIH in 2003. It was this study that gave us the 1:133 stats for celiac disease. If you read this study, however, you will see that celiac affects way more than 1:133. (The way I read it, anyway.) One out of every 133 not at risk have celiac. The numbers go WAY up for anyone in an “at risk” category. (and there are many “at risk” factors.)

The lack of education in the medical community needs to be fixed.

Of course, when tested, we need parents and patients to know that a current negative test does NOT mean it won’t be positive some day. And a negative test does not mean a person is not being affected by gluten. Non-celiac gluten sensitivity is also very real. Nope–the answers aren’t always black and white. And yup, education in the medical community has a long way to go.

Special Note

*Special Note: I’m not saying—-nor do I believe—that screening for celiac is appropriate for newborns. A person needs to be consuming gluten for accurate testing. But I hear (too often) of kids who weren’t tested until they got very very sick. And even then, parents often have to fight to get tests. What about parents who don’t even know about celiac? What about those who don’t know to ask for tests? 

The "What If" Stress vs Stress Of Illness Without Answers

Sometimes these tests and screenings add undue stress and anxiety, as my daughter and my family experienced during those first weeks after my grandson was born. It is one thing when you understand something, and something completely different when you don’t.

For a new mom who has never heard of celiac to be told, “Your child has the gene for celiac disease. You will need to watch for him to possibly develop: weight loss, an inability to grow or gain weight, severe stomachaches, diarrhea, constipation, tooth problems,” and on and on, (with a list of hundreds of possible symptoms). Yes, this can be frightening. Add, “He might need a very strict gluten-free diet for life.” For anyone who has never heard of this disease and who googles it as I did with fatty acid oxidation disorder, this would be just as frightening as it was for us with my grandson.

Of course, I understand celiac. I have seen and heard stories over and over. Stories of children who have gotten so extremely sick due to a lack of testing and a proper gluten-free diet. I know the impact of gluten on someone with celiac. I know how relatively simple it is to eat gluten free. And I know the huge increase in health and quality of life. 

This is a disease that affects close to 1% of the population! Not 1:40,000. Not 1:10,000. Not 1:1,000.  1:100! This is HUGE!  (and even more people have NCGS–NonCeliac Gluten Sensitivity)

More About Newborn Screenings

Learn more about Newborn Screenings (from the CDC).
Blood tests vary state-to-state
Find out what your state screens for HERE.

Celiac screening is NOT routine–yet (at least not yet in the US). When (not if, but when) it is routine, I don’t know what the appropriate age is?–genetic newborn testing? celiac screening once gluten is introduced? Age 2? Age 5? But it needs to happen. Or, at the very least, recognized and tested for when symptoms begin (or when a family member tests positive). 

YES! Anytime anyone is diagnosed with celiac, all immediate family members should be tested!

Until celiac screening is routine, we work on education. For family members of those of us diagnosed, we encourage periodic testing. For those with symptoms, we encourage (and sometimes have to push for) testing. 

Doctors: Please Recognize The Signs And Symptoms

Signs and Symptoms?–What are those? Testing won’t happen unless doctors understand celiac. It won’t happen until celiac becomes a bigger blip on their radar. It won’t happen until they recognize that celiac can (and does) present in any part of our bodies, not just as a digestive issue. And it won’t happen until they recognize that it affects not just physical health, but mental health as well.   

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