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?
Some of the identified stimuli that cause a leaky gut are:
- Gliadin (a peptide found in the gluten protein molecule). See here
- Gastrointestinal bacterial or viral infection. See here
- Intestinal dysbiosis (disruption of the gut microbiota). See here & here (Note: substances or conditions that alter gut microbiota antibiotics, NSAIDs, steroids, antacids, etc.), infections, stress, hormone imbalances, and neurological conditions e.g. brain trauma, stroke and neurodegeneration can cause intestinal dysbiosis).
- Chronic psychological stress. See here
- Candida GI infection (secondary to gut dysbiosis). See here
- Non-steroidal anti-inflammatory drugs (can directly impair TJ function). See here
- Toxins (e.g. alcohol). See here
Intestinal permeability and its association with a number of diseases has become an important area of research concerning GI and other pathologies.
Leaky gut has been associated with the following conditions:
- Celiac Disease
- Type 1 diabetes
- Crohn’s Disease
- Ulcerative colitis
- Ankylosing spondylitis & Rheumatoid arthritis
- Irritable Bowel Syndrome
- Chronic psychological stress
- Non-alcoholic fatty liver disease
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.
Some of the ways good intestinal bacteria help us:
- Aid in digestion and absorption of nutrients from partially digested food.
- Produce short chain fatty acids – a primary energy source for intestinal epithelial cells (see here & here).
- Break down complex carbohydrates including dietary fibers.
- Synthesize vitamins.
- Mediate immune responses in the gut.
- Protect us from pathogenic 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.
Interestingly, it is believed that gut dysbiosis does not usually resolve upon the commencement of a GF diet. See here & here.
Causes Of Gut Dysbiosis
Some of the more common causes of gut dysbiosis suggested by researchers are:
- Antibiotic Usage (the most common cause of gut dysbiosis) See here & here
- Psychological stress
- Reduced intestinal motility
- Radiation Exposure
Intestinal Dysbiosis has been associated with such conditions as:
- Celiac disease
- Crohn’s Disease
- Ulcerative colitis
- Colorectal cancer
- Non-alcoholic fatty liver disease
- Type 1 & type 2 diabetes
- Chronic fatigue syndrome
- Thyroid malfunction
- Rheumatoid arthritis
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).
Because of the close connection between SIBO and CD, some current researchers theorize that SIBO might play an important role in the development of CD. See here & here.
Most Common Symptoms OF SIBO
The most common symptoms of SIBO are very similar to those found in CD patients with abdominal symptoms.
Most Common Symptoms Of SIBO:
- Abdominal pain/discomfort
- Bloating and abdominal distention
- Gas and belching
- In some cases, weight loss related to malabsorption of nutrients may occur.
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?
However, they do know that both SIBO, as with other gut dysbioses, can be highly inflammatory and possibly cause a leaky gut. See here & here
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.
Read this next
New Study Reveals Almost 20% Of Celiac Children May Not Heal On A Gluten-Free Diet
How We’re Staying Healthy At 64: Barbara and John’s Diet And Exercise Strategy
Journey to Health: John’s Story
5 Important Differences Between A Gluten Free Diet And A Paleo Diet
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Wonderful post! SO much great info in one place… Thank you!
Thank you, Megan! I appreciate that.
Wow, that was very thorough and well laid out. Thank you so much for putting this together! I hope that it helps many people. 🙂
I have been gluten-free for 5 years now, and still have only found minimal healing. I’ve done the GAPS diet for about 6 months and found the most healing on it, but also found it was too expensive to be sustainable for my family. We’re currently working on how to fit it in, as when I’m not on GAPS my symptoms come back with a vengeance! It seems for my body that any sort of start causes sufficient inflammation to make my body react to just about anything. Not sure if that makes sense. :p Suffice it to say, gluten-free is definitely not enough for me!
Thank you so much for sharing this at Savoring Saturdays! I’m definitely going to get it out there on my FB page. More celiacs need to read it!
Thank you for your kind comments and sharing your experience with the GAPS diet. I have been on a kind of modified GAPS diet for about 10 years.
One aspect of the GAPS diet that can be very expensive are the probiotics. They do however seem to be an essential part of the diet. If gut inflammation lies in a dysbiosis then some kind of probiotic is going to be essential. To off set the cost Barbara and I have been making a lot of fermented vegetables and SCD yogurt (24hr fermented). They really seem to be helping me. But you’re right, GF is certainly not enough for most celiacs and others who suffer with gut issues.
Have you considered fecal microbiota transplantation in addition to keto and gaps? Would love to hear your thoughts on this. I’m 2 years diagnosed but showed lifelong signs of celiac. I’m in terrible shape, depression, anxiety, stomach pain, joint and bone pain, chronic fatigue, twitching, syncope, etc. I have slightly improved though. I’m 49.
I was diagnosed just under 30 years ago when GF food was unheard of, today we have lots of choices, unfortunately our movies stars decided that a GF diet was healthy and would help them lose weight, and cos of these so called movie stars who hop from GF to regular food whenever they feel like lots of foods that are supposedly GF have modified food starch, malt, vegetable protein which is a definite NO NO. For celiacs. There is no such thing as a GF pizza, I got Pizza Hut to add on their website “not recommended for people with celiac disease” even if they are made separately they are placed in an oven which has been used for regular pizzas, plus the dough tossing around other pizzas the flour is in the air and cross contaminates the pizza. So many things we need to watch out for, and it’s a LIFETIME disease no reprieve. One if the most common side effects in CD is Rheumatoid Arthritis which I developed in 1 year after diagnosis then came IBD and other stomached ailments. This is a terrible disease and can kill you if you DO NOT strictly adhere to a totally GF diet. Just some words of wisdom from someone who has battled this disease almost 30 years.
Thanks for stopping by. Yes, for celiacs a GF diet is a necessity, not an option. The dangers of processed GF food you listed was one of the things that prompted me to include as much GF whole foods in my diet as possible. I generally stay away from processed foods. Also, these foods usually contain ingredients that do not promote gut healing. I did have an aunt who suffered with RA so I truly sympathize with you. I also developed arthritic changes in my fingers starting in my 30’s. It isn’t RA however. You’re correct, CD requires a lifetime of vigilance concerning our diets. Thank you so much for sharing your wisdom and story.
Marian Mitchell says
Yes to all of this! Gluten free is the first step, not the last!
Hi, Marian. Yes, gluten-free is the non-negotiable starting point for all celiacs.
Best post I’ve seen so far. Great information for my daughter that I think will explain her condition and help her with solutions. Thank you
I’m glad the information was helpful. I pray your daughter gets well soon.
Michelle Dovick says
Thank you for the great information. Although I am not Celiac, my husband is and has failed to heal on a gluten free diet. After 15 years on a very strict gluten free diet, his villi are still in a very damaged state and the medical community, including Celiac specialists, have not been able to help him. No one has used the term “refractory celiac” but we were wondering if this was the case. He has been perpetually low in B12, magnesium and zinc and his red cell and white cell counts are also always well below normal. In the past year, he has followed the AIP diet (Autoimmune Protocol) with limited success. It was difficult to determine which foods, once added back into his diet, he was sensitive to (we assumed that his inability to heal was due to additional sensitivities) and he continued to have severe symptoms. A month ago , I encouraged him to try the Ketogenic Diet – high fat, moderate protein, low carbohydrate). He had immediate success. For the first time in 15 years, he no longer has diarrhea, has normal bm’s only once per day, feels great and has energy to burn. Of course, there are no grains on this diet, no sugar, no fruit except berries. I’m not sure how to account for the diet’s immediate success (within 1 day), but am extremely grateful. It remains to be seen whether or not his villi are finally healing and he will have a scope done likely in October to assess this. Any thoughts??
Hi, Michelle. I’m thrilled to hear of your husband’s health recovery. I suspect that for many celiacs the severe inflammation caused by years of gluten ingestion is not always immediately healed by going gluten-free. And, as you know, because his villi were badly damaged, there could be a problem absorbing nutrients which would also hamper the healing process.
I also don’t know if going gluten-free alone is the ultimate answer for many celiacs. Going GF is mandatory for CD, but it may not be sufficient. A few years ago I wrote a post on an important study that found that almost 20% of children who go on a GF diet still continue to show intestinal damage at least one year after going GF.
Many GF diets simply mimic the highly inflammatory standard American diet. The celiac gut is definitely not helped by ingesting lectins, phytates, saponins, highly processed seed oils, and other highly processed foods. Corn, which is included in many GF products, is probably also not beneficial for a damaged gut.
In my case, as a child and young adult, I had severe malabsorption problems (severely underweight) and other problems associated with CD. But I never had severe GI problems.
I finally put on weight in my mid-twenties, but at 30 years old, I came down with severe chronic fatigue syndrome (I would deal with that issue for 28 years). 15 years ago I went GF along with my son. At 7 years old, he was extremely underweight and didn’t even have enough energy to walk across a football field. Like me, he had no GI issues. My older son would often get severe abdominal pains when he ate bread or pasta. The doctors had no answers for us. By chance, a cousin told me about CD and gluten. I had never heard of the disease before that.
In response, my younger son and I went GF. Unfortunately, we didn’t get tested for CD. I was desperate and wanted to see if a GF diet could help both of us. Amazingly, in two weeks my son was a new person. He became full of life and energy.
I, on the other hand, improved a little but was still wracked with fatigue. My other 3 children were tested for CD (I didn’t have the heart to put my younger son back on gluten). They all tested negative for CD, but two of my children’s gliadin IgG and wheat IgG numbers were off the chart. These numbers suggested that they had non-celiac gluten sensitivity (NCGS). NCGS causes systemic inflammation without damage to the villi. All four of my children have been GF for at least 12 years (as well as my wife Barbara). See our whole story here.
Long story short, I didn’t start to see real improvement until I went on a paleo diet. However, what really put me over the top was going keto. Like your husband, I now have abundant energy. It took me about 2 months though to feel the full effects of the diet.
Many people are unaware of the powerful anti-inflammatory benefits of the ketogenic diet. The anti-inflammatory nature of ketones could be the reason for your husband’s success. I believe getting rid of chronic systemic inflammation is one of the most important steps in recapturing good health.
Also remember that celiacs usually have a very poor gut microbiome (and leaky gut). Bad gut bacteria just love a diet high in carbs and sugar. Since a keto diet is low in carbs, it’s likely to aid in keeping our gut microbiome healthy.
It’s fantastic that your husband has had success so fast. I think one of the most important things to wellness is how you feel. If you feel great, you’re doing something right.
One thing I had to pay particular attention to on the keto diet was my magnesium and sodium intake. The correct daily requirements of these elements is critical for success. If you haven’t already done so, you may want to take a look at Barbara’s and my keto journey posts starting here.
I pray that your husband’s villi are on the mend. Barbara and I wish you guys great success in your health journey. God bless and have a great week.
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