You may have seen headlines lately about studies revealing that up to 30% of people with celiac disease continue to have symptoms and gut damage while on the gluten-free diet. This is shocking. But it's important that we think about this critically. Here, I explore a few things about the question: Is the Gluten-Free Diet Enough?
First, let's start with some places where this has been publicized. The Celiac Disease Foundation recently sent several e-mails out noting that people continue to be harmed by the disease even when following a strict gluten-free diet. What is the message they are sharing? We need a cure. I have also heard physician experts talk about a subset of people who don't recover on a gluten-free diet.
Not so fast.
There are a few gaping holes in this conversation. Let's put on our thinking caps for a minute.
1. What did the research actually say?
I took a look at the original paper CDF cited discussing this, written by David Leffler from Beth Israel Deaconess Medical Center in Boston in 2007 in Clinical Gastroenterology and Hepatology.
They identified people with something they call "nonresponsive celiac disease", which basically means people who are treated by a specialist in celiac disease and continue to show (or have recurring) signs of celiac disease (in the form of abnormal labs or symptoms).
They found that 113 out of 603 patients, or 18.7% of the people they studied with celiac disease, didn't get better on the gluten-free diet - they were called "nonresponsive".
What about the 30% rate CDF was talking about?
Turns out, that rate was mentioned in the paper by Dr. Leffler as the upper range given by prior research. If you want to follow me down the rabbit hole for a second...
Dr. Leffler cited a review paper from 1996, written by researchers (O'Mahoney, Howdle, & Lsowsky, Alimentary Pharmacology and Therapeutics) out of the UK.
But here's the thing.
They didn't actually collect any data. They wrote a review paper, which means they summarized the research so far.
That 30% as an estimate given by researchers? It came from a study from 1967 published in The Lancet by a Dr. Pink and colleagues.
Now let's take a step back.
That was clearly very important research and should be remembered as such. But, when we have recent studies about celiac disease, we are (most likely accidentally) saying we have brand new findings about a rate of 30% of nonresponsive celiac disease. But actually, that number comes from 1967.
Think about how different things are now from 1967, when the cost of Wonder Bread was about 50 cents and gas cost 30 cents a gallon.
Guys... medical treatment, gluten-free foods, information and the internet, and awareness are all very different now. We all agree on that.
Big Lesson #1: We need to stop using outdated numbers and use new research instead.
3. Who cares about the rate itself? WHY aren't people getting better?
This question is really important. Why aren't people getting better? Here's the kicker; time and time again, we return to the same answers. Sometimes, people have other health issues that are giving them problems. Dr. Leffler and his colleagues (in that 2007 study) reported a lot of important information about people who are unresponsive:
- Gluten exposure was the top reason why people were not getting better. They estimated that rate to be 36% of the people who were labeled as "nonresponsive".
- Outside of gluten exposure, the other explanations were a combinations of other issues they found, which included irritable bowel syndrome (22%), refractory celiac, which means that your intestines don't actually heal for reasons doctors aren't sure about (10%), lactose deficiency (8%), and other medical conditions. You can read more about refractory celiac here.
Big Lesson #2: For most people, the gluten-free diet doesn't work for them because the diet is just so darn hard.
This is a big issue here, and one I am very passionate about. We need to find ways to help people avoid gluten successfully. It's possible that most, if not all, of those 36% could be much healthier and happier if they had the right foods and support to keep gluten-free. We call this "adherence". What helps people with adherence? That's a big conversation for another day. Stay tuned...
4. So do we need medications? Isn't a cure still important?
This study, along with others, all have shown that the biggest issue we still face for improving so-called "resistant" celiac disease is better success, or adherence, on the gluten-free diet. The authors of this study mentioned that although 36% is a big chunk, previous studies have reported as much as 50%. Although it's just one study and follow-up work is needed to confirm whether this reduction is a trend, they suggested that it may be a reflection on the success of an active community and a team of experts helping people be more successful:
The Boston area has a very large and active CD advocacy group and a number of highly skilled celiac nutritionists. These factors may account for a relatively good adherence to a gluten-free diet, which may vary in different regions.The Take-Home Message:
The gluten-free diet is very difficult, and preventing celiac disease or treating it would make life better for everyone. Still, we have a whole arsenal of tools that can help a big chunk of people feel better sooner after they are diagnosed with celiac disease, by helping improve people's success on the gluten-free diet alone. Here are a few:
- Community support
- Educational materials
- Highly trained medical experts
- A system for helping people who are recently diagnosed
- A better way to track people's success on the gluten-free diet
Yes, we need more medical research to develop a cure, and maybe medications to help when people are still feeling sick. But we can do so much more than that right now, just by building a strong base of people with celiac disease and medical experts who care about making things better, one step at a time.
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