Is the Gluten-Free Diet Enough?

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. 

Quick... everybody panic! The gluten-free diet doesn't work!!

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.

Long story short, from that 22% of the "nonresponsive" people, a small portion had a condition where their gut just didn't heal. But that was only a tiny proportion of the people they studied. 

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.

Growth and Gratitude

For many families, Thanksgiving is a frenzied holiday involving travel, lots of people with their strong personalities, and most of all, food.

Food. It is something that every single person on the planet cannot live without. It is the sustenance that keeps us alive and well. In most cultures, it is also a symbol of love and is ritualized for every important time in our lives. But it can also be the substance that poisons us and contributes to illness.

What do we do when food carries so much social and emotional weight?

Since being diagnosed with celiac disease, Thanksgiving has been many things. Before being diagnosed, it was a holiday for eating lots of fun things I didn't usually eat, always followed by inexplicable stomachaches and other ailments. But everyone feels terrible after Thanksgiving dinner, right? After my diagnosis, Thanksgiving became a much more emotionally heavy holiday. At first, it was a complicated and stressful experience that reminded me of my illness. Eventually, and with a lot of work, it returned to a warm and festive experience. Nowadays, I find that Thanksgiving is a marker that reminds me of the path I have walked since my diagnosis.

My first Thanksgiving after finding out I had celiac disease, the holiday became the source of all dread in my world. I had only been diagnosed two months earlier and had been feeling sicker than when I was eating gluten in the first place. I had planned a trip to visit extended family in San Diego, which would involve a six-hour drive each way, a long weekend at a hotel, and a Thanksgiving meal at another person's house.

This trip would push me far outside little gluten-free safety bubble I had created desperately since my diagnosis. I had been advised to avoid eating out for a few months to ensure that I recovered successfully. This would be the first test of eating away from home, the first attempt to order gluten-free foods, and the first time trying to trust other family members with my health at their home.

The preparation for Thanksgiving was challenging to navigate, to say the least. Fortunately, the hostess was a kind woman who I knew well and felt I could talk to honestly. When she heard the news of my diagnosis, she insisted that I come to her house and that she would do anything she had to do to make a meal that was safe for me. I sent her lists and resources outlining how to clean a kitchen to keep it gluten-free. She decided to buy new cookware for items that I would be eating. She even made sure to bake pies and other flour-containing items on a different day and to clean the kitchen before cooking the rest of the meal. I was so grateful.

I opted to bring several dishes from home that I knew would be safe. I made gluten-free stuffing, a cranberry-apple crisp, and brought my own gravy. I also packed a cooler of food for the trip itself- rice cakes, nut butter, cereal, and veggies. Unfortunately, I had not yet learned how to change my diet so that I not only cut out gluten, but that I also added in enough nourishing food to keep my body healthy. At the time of my first Thanksgiving, I was losing weight uncontrollably and feeling worse than ever. I begged my husband for us to stay home and do a quiet holiday on our own, but he knew we had to go on living our lives, somehow.

I won't sugar-coat it, my first Thanksgiving was miserable in the moment. I felt ill without any particular reason for it, I was paranoid about everything I ate and what it might do to me, and I was mortified that I was the weird, sick person dragging everyone down.

The night before we returned home, we played a game of Apples to Apples, where you pick an adjective card and everyone guesses the best noun to go with it. I picked "Overwhelming". What a fitting adjective for my state of being. Guess what the winning noun was? "Wheat". "WHEAT"! Talk about a perfect description of that week.

It got better though. That's the most important, most joyful bit of this story. It got better. Much better.

By the following year, I had gained new kills for eating, traveling, and cooking by leaps and bounds. I saw a nutritionist and learned the importance of eating high protein foods to replace the wheat I had been eating and to help my gut heal. I found apps and online lists of restaurants and food products that were gluten-free friendly. Most of all, I worked through my anxiety and did my best to live my life despite the fear of getting sick.

I'm happy to say that by my second Thanksgiving, things were much better. I actually enjoyed myself. I discovered new restaurants that had delightful french toast, miso-glazed black cod, and many other treats. It wasn't a perfect trip. But I was living my life.

Every year, I think back to that first post-diagnosis Thanksgiving. It helps me remember where I came from and how much I grew. I am able to enjoy food so much more than I ever could before I was diagnosed. More importantly, it reminds me of the purpose of this holiday- to give thanks. It took time and work, but I am grateful that I was able to come out the other side. I made it through the transition, not only back to where I had been, but actually much better off.

Holidays involving food are complicated to deal with when you have food restrictions. It carries emotional weight for all involved. But it also helps us re-evaluate what we want the holiday to mean to us, personally. For me, Thanksgiving is a time to remind myself how strong and resilient I can be. And for that, I am grateful.