You’ve just been diagnosed as an adult with celiac disease (CD). Your doctor tells you that in order to prevent further damage to your intestines and to heal properly you must go on a strict gluten-free (GF) diet.
You leave the doctor’s office very unhappy with the prescription but relieved that you might have found an answer to your health problems. Everything should be fine now, right?
Well, as many of you know, that is not necessarily the case. Many adult celiacs, even when on a strict GF diet, do not immediately get well. They continue to have GI and other chronic symptoms many years after going GF. This can be especially true for some who are diagnosed later in life.
In this post, I will discuss why these symptoms might continue to persist, and in following posts, I’ll suggest what can be done to combat them.
Celiac Disease Is Resistant To Healing
It’s important to realize that simply going on a GF diet may not be a sufficient path to wellness for someone with CD. It’s a necessary treatment (no healing without it), but CD is a tough disease to recover from. Consider the following studies.
In 2009, The Journal of Alimentary Pharmacology and Therapeutics presented a study that looked at 465 CD patients and found that only 8% of adult patients reached “histological normalization” after following a gluten-free diet for 16 months. Histological normalization means healthy gut tissue. The authors concluded:
“Complete normalization of duodenal lesions is exceptionally rare in adult coeliac patients despite adherence to GFD.”
Another 2010 study in the American Journal of Gastroenterology looked at 381 adults with biopsy-proven Celiac disease. The authors found small intestine mucosal recovery occurred in only 34% of participants following a gluten-free diet for 2 years. They concluded: “Mucosal recovery was absent in a substantial portion of adults with CD after treatment with a GFD.”
These two studies indicate that though the celiac patients were on a GF diet for 16 months to 2 years a majority still had not completely healed.
Wait a minute. Isn’t a GF diet supposed to heal celiacs? Let’s go on.
Celiac Disease And Gut Inflammation
Researchers have demonstrated that the protein complex gluten found in wheat, rye and, barley is responsible for the autoimmune inflammatory response in CD.
Once gluten is removed from the diet, the inflammatory process should theoretically cease.
This means that the characteristic destruction of the intestinal villi found in celiac disease should also cease and healing should begin.
Outside of refractory CD, which is very rare, celiacs do begin to heal once on a GF diet.
The damage done to intestinal villi reverses and the autoimmune inflammatory reaction caused by gliadin should stop.
However, even though the autoimmune inflammatory process ends when a celiac goes on a GF diet, that does not mean that other inflammatory processes associated with the disease have stopped.
The previous 2009 study cited in the Journal of Alimentary Pharmacology and Therapeutics also found that of the 465 Celiac Disease patients who were on a GF diet for 16 months, 65% still had “persistent intraepithelial lymphocytosis.” That’s another name for gut inflammation.
Another study in the 2008 Journal of Inflammation reported that researchers observed 18 symptom-free Celiac disease (SFCD) patients and found they still had elevated markers of gut inflammation even after 2 years on a gluten-free diet. The researchers stated:
“Faeces of both active CD and SFCD (symptom-free 1-2 years on a GFD) patients, representing an imbalanced microbiota, significantly increased TNF-alpha production and CD86 expression in PBMCs, while decreased IL-10 cytokine production and CD4 expression compared with control samples.”
This means that symptom-free celiacs on a GF diet still had acute gut inflammation after 1-2 years.
If there is no more gluten in one’s diet, then inflammation caused by gluten should be gone. Why is gut inflammation still taking place? And is this inflammation responsible for persistent symptoms? Let’s dig a little deeper.
Celiac Disease Is Associated With “Leaky Gut” Syndrome
Ideally, after food is digested by the stomach, it then passes into the lumen of the small intestine where absorption of nutrients takes place.
Think of the small intestine as a garden hose. The inside empty space is the lumen. The first inner lining is the epithelial mucosal layer. It is made up of a single layer of cells called enterocytes.
This layer provides a dual function. First, it is where initial food absorption takes place. Second, it provides a barrier against unwanted organisms and substances from entering the next layer called the lamina or sub-mucosa. It is this layer where nutrients enter the bloodstream.
Notice that the epithelial layer is shaped in finger-like projections called villi. It is these villi that are damaged in celiac disease.
The one-celled enterocytes of the epithelial layer are held together by structures called tight junctions (TJs). These TJs create a barrier between the cells.
Ideally, they allow desired nutrients and other substances to enter and leave the lamina while also keeping unwanted invaders (bacteria, viruses, toxins, undigested food particles etc.) out.
When TJs are damaged or are caused to open at the wrong time, their barrier function is compromised and increased intestinal permeability or leaky gut occurs. Notice in the illustration some bacteria can cause a leaky gut by direct breach of the epithelial cell itself.
If invaders reach the lamina, then inflammation, an autoimmune response, an allergic response, or malabsorption of nutrients could occur. It is even possible for these invaders to enter the bloodstream and wreak havoc on other parts of the body.
Incidentally, it is the lumen where the CD autoimmune inflammatory response to gliadin takes place. In order for CD to develop, a leaky gut is a necessary requirement.
What Causes A Leaky Gut?
Intestinal permeability and its association with a number of diseases has become an important area of research concerning GI and other pathologies.
In the case of CD, if gluten is the sole cause of a leaky gut, then it should cease when gluten is removed from the diet. However, current research is showing that a leaky gut is present in a high percentage of celiac patients even after the removal of gluten.
A High Percentage Of Celiacs On A GF Diet Still Have Leaky Gut
Dr. Alessio Fasano, in his pioneering work on CD, has demonstrated that in active CD, gliadin, a peptide found in the gluten protein, causes an abnormally large release of a compound called zonulin, which in turn leads to a disassembly of the TJ.
Because of the disassembled TJ, gliadin molecules can pass through the normally closed epithelial junction and enter the intestinal lamina where the autoimmune response associated with CD begins.
Fasano has shown that when celiac disease patients follow a strict gluten-free diet, their zonulin levels do begin to fall. However, their levels are still considerably higher than non-celiacs. See here & here.
This means that a person with CD who is in remission still has the likelihood of a leaky gut.
The important question is why do celiacs on a GF diet still have a leaky gut if there is no more gliadin to cause it? Remember that leaky gut has a number of other causative factors.
There must be something else causing the leaky gut and possibly creating an additional chronic inflammatory situation.
Let’s consider another important intestinal health factor.
About 100 trillion microorganisms inhabit your intestinal tract. Don’t be alarmed. That is the normal amount for humans.
Most of these organisms, also known as intestinal flora or intestinal microbiota reside in the large intestine (colon) with smaller amounts in the small intestine.
Ideally, they exist strategically at the interface of the lumen and epithelium and play an extremely crucial role in maintaining human health. As such they are considered commensal or good bacteria.
Under certain circumstances when the normal gut flora becomes unbalanced, a potentially dangerous condition known as gut or intestinal dysbiosis occurs.
Gut Dysbiosis & Leaky Gut
When the normal balance of intestinal flora is disrupted, the positive health benefits that helpful bacteria provide can be severely diminished. This is especially true in the ability of good bacteria to protect us from pathogenic bacteria.
If pathogenic bacteria overwhelm the good bacteria or somehow the good bacteria are diminished thus preventing them from keeping pathogenic bacteria in check, then the potential for an inflammatory situation is created.
Researchers have shown that when some pathogenic bacteria reach the intestinal mucosa, they can release pro-inflammatory products that could cause a disassembly of the TJs and thus a leaky gut. See here & here.
It’s important to note that if abnormal bacteria and a leaky gut are present, these bacteria or their toxic products (LPS) could potentially pass from the lumen of the intestine into the lamina creating another possibly inflammatory condition which could further feed the leaky gut scenario.
Further, if bacteria or toxins reach the lumen, then all kinds of problems could arise causing inflammation in the liver and other parts of the body. It is speculated that this may be the reason some CD patients have liver abnormalities.
Recently researchers have noted the high correlation between celiac disease and intestinal dysbiosis. We’ll take a look at this shortly.
Causes Of Gut Dysbiosis
A type of dysbiosis that is particularly associated with CD occurs in the small intestine. Let’s take a look at it.
SIBO (Small Intestinal Bacterial Overgrowth) & Celiac Disease
The small intestine normally contains much fewer bacteria than the large intestine. However, in a condition called Small Intestinal Bacterial Overgrowth or SIBO, there is an increase in the number of bacteria and/or changes in the types of bacteria present in the small intestine.
Patients with SIBO are usually found to have an increase in various types of bacteria in their small intestine that should be found in the colon. Less frequently SIBO is characterized by an increase in normal small intestinal bacteria.
Current research has revealed that SIBO is highly correlated with CD. It’s believed that anywhere from 9% – 55% of those who suffer from CD also have SIBO.
It’s also particularly associated with celiacs who respond poorly to a GF diet and those CD patients who suffer from persistent symptoms despite being on a long-term GF diet but who are in remission (healing villi).
Most Common Symptoms OF SIBO
The most common symptoms of SIBO are very similar to those found in CD patients with abdominal symptoms.
Why Do Celiacs Have SIBO?
Research into the connection between SIBO and CD is still in its infancy, and it’s not entirely clear why SIBO is found in a significant percentage of CD patients. However, some researchers theorize that one answer may be related to intestinal dysmotility, a common cause of SIBO.
Normally, the body will act to push food through the gut. When this mechanism is impaired (dysmotility), bacteria may not be effectively swept from the proximal bowel into the colon.
Researchers theorize that in long-standing CD this process may be disturbed, thus leading to abnormal bacterial populations in the small intestine.
Another possible reason could be that the inflammatory nature of CD somehow upsets the normal microbiota. Research is inconclusive in this area.
To read about other causes of SIBO and risk factors associated with it, see here. If someone believes they suffer from SIBO, a doctor can test for it. The tests, however, can be unreliable. There is a specific treatment plan for SIBO which may include antibiotics, herbal antibiotics, motility drugs and probiotics. See here.
Leaky Gut: The Link Between SIBO & CD
Let’s recap what we have seen thus far.
- CD is a disease characterized by chronic inflammation.
- Inflammation and symptoms in CD often remain even after the start of a GF diet.
- A leaky gut (gluten-induced) is characteristic of CD but often remains even after the removal of gluten from the celiac’s diet.
- A high percentage of CD patients have SIBO.
Currently, researchers are not entirely sure of the exact relationship between SIBO and CD. In other words, does SIBO precede CD or does CD precede SIBO?
This means that a CD patient with SIBO has two chronic inflammatory conditions that could cause a leaky gut. And even if gluten is removed from the diet, the presence of SIBO could still cause an inflammatory environment and a leaky gut.
Again if pathogenic bacteria or their toxins enter the lamina of the intestine, severe problems could occur throughout the body.
What has basically happened is that a vicious cycle has been created. SIBO & gluten cause inflammation and a leaky gut, and a leaky gut will lead to more inflammation, and more inflammation leads to even more leaky gut.
The only way for a celiac to get better is to break this inflammatory cycle.
What Can A Celiac Do In Order To Feel Better?
It starts with a diet that is anti-inflammatory and doesn’t feed bad bacteria. Two diets that promote this are the Specific Carbohydrate Diet pioneered by Elaine Gottschall (see here and here) and the GAPS diet developed by Dr. Natasha Campbell-McBride. These diets differ slightly and add in foods as a patient heals. Some of the highlights of an anti-inflammatory diet are:
- Eliminate wheat, rye, barley, and oats. For the celiac, a GF diet is absolutely essential. However, remember that a GF diet may not be sufficient. A GF diet may not restore gut bacteria and since many GF products are high in sugar this may actually feed bad bacteria.
- Eliminate added sugars (sodas, candies, cakes, fruit juices) to starve out overgrown bad bacteria.
- Eliminate processed foods filled with added sugars, PUFA oils, additives, or dyes.
- Include low-toxin whole foods in their natural state.
- Include plenty of nutrient-dense animal products filled with protein and healthy fats.
- Include fermented foods which contain good bacteria (sauerkraut, probiotic 24hr fermented yogurt, kefir, kimchi etc.).
- Both the SCD & GAPS diet restrict milk probably because of lactose intolerance.
- Include bone broth. More on this: How To Make Beef Bone Broth And Why It’s Good For You
Again the above recommendations are for healing an inflamed gut. As the gut heals, other foods can be added in if tolerated. See here.
Our recipes here at the Gluten Free Homestead are designed primarily for those who want to eliminate gluten from their diets but at the same time don’t want to forego the goodness of tasty food. Many of our recipes are designed for those looking for alternatives to the standard American diet.
Include probiotic supplements to replenish good bacteria and help intestinal barrier function.
L-glutamine has been shown to protect the epithelial layer of the gut. See here and here. A recent study also suggested that it might play a role in stabilizing tight junctions. For a type of glutamine protocol see here.
Since stress is known to contribute to a leaky gut, special attention should be taken to reduce stress. These include things like proper sleep, exercise, rest & lifestyle changes.
Since vitamin D deficiency is common in CD, normal levels should be maintained. Vitamin D is also believed to contribute to maintaining the epithelial mucosa barrier function.
In the following weeks, we will feature some recipes that will help reduce inflammation and also highlight some other actions we can take on our journey to wellbeing and a healthy lifestyle. Let us know which ones work for you.
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