What Happens When Your Celiac Doesn’t Improve On A Gluten-Free Diet?

It’s bittersweet when you get diagnosed with celiac disease. On one hand, it’s a relief to finally know what’s wrong with you. After all, it can take 6-10 years, on average, to land on the right diagnosis. On the other hand, following a strict gluten-free diet means completely changing your eating habits and lifestyle virtually overnight — no simple task.

But what if you’ve faithfully followed a gluten-free diet for a year (or more) and still aren’t seeing results? Besides being incredibly frustrating, this unfortunate scenario is quite common. In fact, research shows that only a small percentage of adult celiac patients show complete gut recovery after following a gluten-free diet for 16 months to two years.

The sad truth is that roughly 60 percent of those who develop celiac disease in adulthood don’t heal with a gluten-free diet alone. So, what else is going on?

Celiac origins

To understand celiac disease, we need to discuss two factors: intestinal permeability (better known as leaky gut) and the inflammatory protein known as zonulin.

Your intestinal wall is lined with cells that make up a mucosal barrier, which allows your body to regulate what gets absorbed into the bloodstream. You can think of it as a watertight fence set up around a city, and it’s one of the first lines of defense against pathogenic organisms. In fact, your digestive tract is so critical to immune health that roughly 70-80 percent of your immune system lives in your gut.   

Leaky gut develops from any number of assaults on the GI system, including undigested food, environmental toxins, heavy metals, microflora imbalances, and food sensitivities. Essentially what happens is that these assaults break down this first line of defense and the tight junctions — that watertight fence — start to spring “leaks.”

Though the factors that cause leaky gut are plentiful, the outcome is the same: particles and pathogens that should stay in your digestive tract enter the bloodstream, triggering your systemic immune system to react and causing inflammation, food intolerances, allergies, and infections.

If this cycle persists, the immune system continues to overreact until it eventually goes haywire and starts attacking parts of you, not just undigested food or rogue bacteria. The result? Autoimmune diseases like celiac, rheumatoid arthritis, and Hashimoto’s, among others. In the case of celiac, the immune system attacks the villi of the small intestine, hampering the body’s ability to absorb nutrients and further damaging the intestinal walls.  

The case of zonulin is an interesting one. Previously, celiac disease was thought to be strictly about genetics and exposure to gluten. Now, however, research is showing us that the tissue of celiacs is inherently different — both from healthy controls and even from people with non-celiac gluten sensitivity. In celiacs, the level of zonulin is much, much higher than the other two groups, and it appears to be playing a key role in why someone either develops the disease or not.

You can think of zonulin as the “key” that unlocks or locks the watertight fence mentioned above. In a healthy gut, zonulin is responsible for causing diarrhea and flushing the system when we eat a bad meal and come down with food poisoning. After the pathogen is pushed out, zonulin drops and the tight junctions of the gut re-close.

When it’s overproduced, however, zonulin goes into overdrive by breaking apart the tight junctions of the intestines that usually act as a barrier between the digestive system and the bloodstream.

To tie it all together, exposure to gliadin and glutenin, the main proteins in gluten, trigger zonulin in some people, making the gut wall consistently permeable.

Zonulin and the microbiome

Currently, scientists believe that zonulin is activated by gluten and imbalances in the gut microbiome. While research is still very much ongoing, it’s thought that the presence of increased levels of pathogenic bacteria like E. coli and salmonella can stimulate zonulin production, while helpful bacteria, including bifidus, can aid in protecting the gut wall.

It’s important to note that science has not proven that microbiome dysbiosis is a cause of celiac disease, but it does give researchers a promising bone to chase as they continue to study the connection between zonulin, leaky gut, and gluten.

Why removing gluten isn’t enough

As you can see, it’s a complicated web with no easy answer when we’re looking at what causes celiac disease and how to reverse its course. And while removing gluten is critical to starting the process of healing the digestive system, avoiding it doesn’t undo the damage in the majority of celiacs.

In most cases, a gut healing protocol that focuses on the root cause of leaky gut is the second most important step after removing gluten from the diet. Looking at the theories on zonulin would also point to balancing the microbiome as a critical step in halting the attack on the gut wall.

Since everyone is different and comes to the table with a unique hand of cards, working with a functional nutritionist or functional medicine practitioner is the best way to land on a treatment plan that’s right for you.

This professional will likely recommend removing any additional foods you could be reacting to, adding in gut support supplements like l-glutamine, marshmallow root, and slippery elm, and upping your intake of healthy probiotics, prebiotics, and healing foods.

While it’s disheartening to hear that you have more work to do when it comes to your celiac, taking a proactive approach to uncovering the root cause of your health woes will save you time, stress, and illness for decades to come.

Andrea Wien is a nutritional therapist and writer. Having been diagnosed with celiac disease over 20 years ago, she was gluten-free before it was cool. Now, she helps people kick their sugar habits, boost their fertility and integrate whole, nutrient-dense foods into their lives. She’s mildly obsessed with all fermented things, detoxification, nose-to-tail butcher shops, and prenatal nutrition.