Many folks with celiac have asked this very question: Why don’t they just test everyone for celiac disease?
It makes sense. Celiac, if undiagnosed, can have long-term implications for both children (stunted growth, issues learning in school, other developmental problems) and adults (cancer, infertility, osteoporosis…). Also, while many folks have symptoms, one study reports up to 60% of children and 41% of adults have no symptoms whatsoever.*
With 1 in 133 people having celiac disease (aka 3 million in the US), and 97% of them not getting diagnosed, it is no surprise that people who have had experience with celiac disease wonder why there isn’t a mass screening.
The Celiac Screening Research:
This was an interesting study out of Sweden. It really involved focus groups rather than hard data like blood work or other invasive testing. 145 adolescents (no ages given) and their parents agreed to meet with researchers about mass testing. According to the abstract, 92% of the parents agreed that future mass testing was needed. Many of them believed that it should be done at the age of 10 years or younger.
According to the full report, the main reason to get the mass screening is create awareness for the disease. One girl is quoted in the study as saying,
“It would be good to test every child, because if they don’t feel good, then they would be able to feel better. That’s how it was for me.”
However I was taken by one thing a boy said in this article — which speaks to awareness but perhaps more in the medical community.
“I think you should have a screening, because if it turns out more children have it, then maybe scientists will make some effort so you don’t have to have it.”
Some adolescents questioned why they need to be tested if they don’t have symptoms. One girl addressed that,
“I took the test but didn’t have any symptoms. Now I have to eat gluten-free. I just think that only those who feel bad should be tested.”
Researchers admit the study could be affected by the fact that participants knew they were a part of a screening study. Researchers said, “We found that the reasons adolescents and parents participated in the screening involved a feeling of duty to contribute to research as well as a means of handling the risk they were introduced to.”
I thought the conclusion of the study was well said and a great summary,
“Although the incentive to participate was found to be non-personal benefits, and the diagnosis was met with surprise, the most predominant reaction was a feeling of gratitude for being made aware of the diagnosis. Although some adolescents and parents were more reluctant regarding screening the most predominant view was that screening for everyone would be welcomed, with the argument that if we know how to detect the disease, being offered the test is a human right.“
In my opinion, that is well said (especially the last part which I bolded for this article, it was not bold in the research). At this time there is no hint on the horizon that there would ever be mass screening. The screening they are talking about here I believe would be basic blood work, but technically I could not find their definition of “screening” in either research document.
I have two points:
- I think the 97% undiagnosed rate would come down if they did mass screening for celiac.
- I think the one lone mass screening wouldn’t catch a lot of celiac that rears its head later in life. The later in life a celiac diagnosis comes, the greater risk of getting another autoimmune disorder like diabetes.
Since mass screening isn’t really on anyone’s agenda right now to be required, I believe, at the very least, that if someone asks for a celiac blood panel (screening) a doctor must adhere to their request. I hear of many doctors who deny doing this screening because someone may not have symptoms or the symptoms they have aren’t “classic”.
There are many more good points in this study that I didn’t get to, so feel free to read it for yourself. I found the the quotes from patients fascinating.