Even a short scan of the published medical literature on the impact of diet, specifically food allergies and intolerances on chronic fatigue syndrome (CFS) would lead you to conclude dietary modifications have no impact on either the onset of or a recovery from the illness.
Back in 1996 researchers in the Journal of the American Dietetic Association found no specific nutrient deficiencies in ME/CFS and concluded diet did not play a role. Dietary guidelines for CFS remain as those recommended by the CDC in the US and abroad; CFS patients should simply follow the official government “balanced diet” guidelines which promotes high levels of starchy carbohydrates like gluten-containing breads and cereals.
Could they be missing something? I propose that two disorders associated with sensitivity to the gluten products in grains, Celiac Disease (CD) and Non-Celiac Gluten Sensitivity (NCGS) are vastly underdiagnosed both in the general and CFS population. In fact, studies suggest in undiagnosed gluten sensitivity is contributes to early mortality.
Definitions of CD and NCGS:
“CD is a much greater problem than has previously been appreciated” Archives of Internal Medicine February 2003
- Celiac Disease – refers to people with total villous atrophy in the gut as a result of immune sensitivity to gluten (gliadin) which has resulted in autoimmune antibodies to the gut lining
- Non-Celiac Gluten Sensitivity – includes broadly two classes of people, first those with only partial villous atrophy or inflammation in the gut (which the current test for CD misses) induced by sensitivity to gluten, and second, people with no gut imbalances at all but autoimmunity to other organs and systems (e.g. thyroid) induced by sensitivity to gluten
Autoimmunity and Celiac Disease
“Gluten sensitivity is a systemic autoimmune disease with diverse manifestations…Lancet Neurology March 2010
As you will read below, both untreated Celiac and NCGS appear to significantly increase mortality rates and CD is being implicated in almost all autoimmune disorders. .
Autoimmune disorders are now cumulatively the third leading cause of death in the industrialized world.
While many individual autoimmune diseases are rare, collectively they are thought to affect approximately 8 percent of the United States population – 24 million persons. To provide a context to evaluate the impact of autoimmune diseases, cancer affected approximately 9 million people and heart disease affected approximately 22 million people in the United States
With diagnostic rates at about 1 out of 3 people, some form of autoimmunity is probably present in at least 72 million people in the US.
You are 10 times more likely to develop an autoimmune disorder if you have CD.
More than 19,000 papers on CD and the new entity NCGS have been published in PubMed. Despite (or maybe because of) the voluminous data, no one has worked connecting the dots and synthesizing the results in a way that both patients and busy practitioners can get… Enter Dr Tom O’Bryan, formerly busy physician himself and a functional medicine specialist.
Dr. O’Bryan specialized in the treatment of Celiac and NCGS before giving it up to train other Doctors and practitioners around the world full-time on the subject. This man Dr. Bryan, you might say, is on a mission.
In this article I aim to summarize key information from trainings Dr O’Bryan gave in the UK in 2011 to nutritional therapists and doctors.
I can almost guarantee your doctor or gastroenterologist or specialist ME/CFS doctor doesn’t know much of this information and probably doesn’t grasp its potential significance in ME/CFS.
A list of resources for further education with Dr O’Bryan can be found at the end of these series of articles as this article only covers a partial amount of the information.
Patients and practitioners alike may be surprised that diet can play a critical role in serious chronic complex illnesses such as ME/CFS. Some may even feel downcast that “just diet” and not a virulent bug that is the cause or a major contributor their ME/CFS.
Misconception and Misdiagnosis
Misperceptions regarding the nature of food ‘allergy’ that still permeate much of the medical world are at the root of this misunderstanding. “Classical” approaches to understanding food allergies assume reactions to food can only be IgE mediated. IgE produces classic allergic reactions such as sneezing, sniffling, rashes and difficulty breathing. We know from the research that IgE food allergies are likely to play only a small role in CFS patients.
Celiac disease (CD) and non-celiac gluten sensitivity (NCGS), however, are IgG and IgA mediated immune responses that can cause chronic gut inflammation, and very likely chronic inflammatory and autoimmune processes elsewhere in the body.
The Inflammatory Disease ‘Epidemic’
Inflammatory disorders have been increasing rapidly over the past thirty years. Chronic inflammation and autoimmune processes are implicated in ALL of the major chronic complex illnesses that blight humans today. The studies covered in this blog suggest a ‘fire in the gut’; i.e., untreated gut inflammation may increase the risk of early mortality in all major chronic illnesses
For a variety reasons covered later, including the intriguing evidence that at least a subgroup of the ME/CFS population has an autoimmune disorder , the facts about CD and NCGS need to be fully understood.
This article will show why most research studies on dietary modification in ME/CFS have find no improvement, while studies using nutritional approaches in clinics like I co-founded are showing statistically significant improvement in CFS patients.
Read my full bio HERE
At the end of this series of articles is a special discussion section for CFS/ME patients, covers the implications of the CD and NGSC research for ME/CFS, plus steps concerned ME/CFS patients can take next.
10 FACTS YOUR DOCTOR OR GASTEROENTEROLOGIST PROBABLY DOESN’T KNOW ABOUT CELIAC DISEASE AND NON GLUTEN CELIAD SENSITIVITY (NCGS)
“…for every symptomatic patient with celiac disease there are eight patients with celiac diseaseand no gastrointestinal symptoms.”Gastroenterology February 2001
FACT 1 - Due to a Historical Misconception that Celiac Disease (CD) MUST Present with Gastrointestinal Symptoms, CD is Vastly Underdiagnosed.
“We found a high-prevalence of CD between CD FMs, and most of them were asymptomatic.” European review for medical and pharmacological sciences.
The chances are if you have few or no GI symptoms, your Doctor won’t have tested you for CD. Nor is CD part of the differential diagnosis for ME/CFS. Unfortunately, doctors don’t realise that neurological symptoms and a wide range of other non-GI symptoms, most of which are found in ME/CFS, should trigger the test for CD.
The current guidelines for celiac disease suggest testing for it in “chronic fatigue, short stature, delayed puberty, dental enamel defects, elevated liver transaminase levels, dermatitis herpetiformis, and nutritional anemias…
The brain seems to be particularly vulnerable… Pediatrics August 2001
CD was originally believed found in people with diarrhea, cramping, bloating, constipation and other gastrointestinal issues, stool problems, anemia and weight loss. Further research revealed CD and its offshoots commonly cause fatigue, weakness, osteoporosis, joint and bone pain, migraines, numbness and tingling, depression, etc.
“The iceberg is a common model used to explain the epidemiology of coeliac disease. The majority of patients have what is termed silent coeliac disease, which may remain undiagnosed because the condition has no (GI) symptoms.”British Medical Journal July 1999
Although celiac disease has been known for over thirty years to cause both gastrointestinal and neurological symptoms, it took until 2000 that celiac disease was shown, in some individuals, to cause only neurological symptoms. As late as 2010, a review article in Lancet, no less, noted that ‘only recently’ has it been accepted that celiac disease can present with only neurological symptoms. In fact, it appears that most people with CD who have neurological symptoms don’t have gastrointestinal symptoms.
FACT 2 – A Diagnosis of Celiac Disease Refers to the End Stage of the Disease and Requires Total Villous Atrophy
CD takes YEARS to manifest and is preceded by GUT INFLAMMATION. These earlier stages may be described as part of Non-Celiac Gluten Sensitivity (NCGS) but, like, celiac disease, also still mostly go undiagnosed and untreated.
If you had a negative test for CD that means you didn’t have total villous atrophy. You could, however, have partial villous atrophy or increased lymphocyte activity in the gut lining which standard testing for CD misses.
The villi, with their finger-like projections, appear like shag carpets in the gut. The villi, with their high surface area, maximise nutrient absorption from the gut.
If you have partial villous atrophy, or no villous atrophy at all; your CD test will be NEGATIVE.
A large amount of inflammation in the gut can still occur in people not testing positive for CD. In fact, it’s clear that the processes that result in total atrophy of the villi begin much, much earlier and are often evident if they are looked for. In fact, some researchers believe the search for the roots of celiac disease should begin early in life, perhaps even in utero .
Normal Vs Atrophied Villi
Normal looking villi appear like the below:
Below is total villus atrophy (required for coeliac disease diagnosis):
Total villous atrophy doesn’t occur overnight. The gut inflammation (mucosal intraepithelial lymphocytosis) that usually precedes the war zone-like structures occurring in total villus atrophy, can be identified. The lymphocytes shown in brown, below, are producing the cytokines that will eventually destroy the intestinal villi, leading to “total villous atrophy” or “CD.”
Indeed, studies suggest that the degree of lymphocyte invasion present is a more effective and certainly earlier test for gluten sensitivity than charting the degree of atrophy of the villi. Inflammation (lymphocyte invasion) comes first, followed by damage to the villi, followed by destruction (atrophy) of the villi.
The presence of gluten induced autoantibodies is another early test which, if the person keeps consuming gluten, appears to be able to predict the ultimate demise of their villi – (and their ultimate diagnosis as celiacs.)
If we include now not only all CD, but also all those with NCGS, how many people suffer from some form of gluten sensitivity?
312 family members (FMs) of CD disease patients were tested for all types of gluten sensitivity ie: CD, subclinical and silent forms. 1 out of 5 FM tested positive – suggesting 20% of the population have some form of gluten sensitivity.
FACT 3 – Untreated Celiac Disease (CD) and Non Celiac Gluten Sensitivity (NCGS) Is Associated with Increased Mortality Rates Than Celiac Disease
Your mortality rate is HIGHER with NCGS AND CD and does not require the end-stage of total villous atrophy
“The elevated mortality risk for all causes of death combined, reflected, for the most part, disorders characterized by immune dysfunction” Archives of Internal Medicine July 2003
A large Swedish Inpatient Registry study investigating mortality risks in more than 10,000 CD patients over 30 years found having CD increased the risk of death from a plethora of major disease. The study examined standardized mortality ratio (SMR) which charts the increased likelihood of death if you have both CD and another disease. The SMR of 11.4, for instance, in non-Hodgkins Lymphoma (NHL), for instance, indicates a person with CD and NHL is 11.4 times more likely to die earlier from Non-Hodgkins lymphoma than someone with that disease and no CD.
Note that most of these disorders are associated with immune dysfunction.
- “Non-Hodgkins Lymphoma (SMR 11.4)
- Cancer of SI (SMR 17.3)
- Inflammatory Bowel Diseases (SMR 70.9)
- Autoimmune Diseases (including RA) (SMR 7.3)
- Diffuse disease of Connective Tissue (SMR 17.0
- Allergic Disorders (ie.asthma) (SMR 2.8) Diabetes (SMR3.0)
- Disorders of Immune Deficiency (SMR(20.9) Tuberulosis (SMR 5.9)
- Pneumonia (SMR 2.9)
- Nephritis (SMR 5.4)”
The largest ever study of mortality rates found celiac disease in almost 10% of 350,000 plus biopsys collected over 40 years, ‘latent’ CD (normal mucosa but positive blood work) in about 1% (3.7K), and inflammation but still partially intact villi in about 5% (13K) of the biopsies
Results showed increased mortality rates in all three cohort groups; startlingly, mortality rates were highest in the inflammation (Non-Celiac Gluten Sensitive) group.
- HRs in Coeliac disease (HR, 1.39; 95%) (i.e. 39% more likely to die earlier)
- HRs in latent Coeliac disease (HR, 1.35; 95%) (35% more likely to die earlier)
- HRs in patients with inflammation (HR, 1.72; 95%) (72% more likely to die earlier)
When Ignorance is Not Bliss
“Individuals with Coeliac disease are treated with a gluten-free diet, while very few with inflammation are. Those with inflammation may have an overall worse prognosis than those with villous atrophy, since institution of a gluten-free diet often leads to normalisation of the mucosa.”Journal of the American Medical Association Sept 2009
What could account for such a large increase in mortality in what appeared to be the least severely affected group? Proper diagnosis. The study authors suggested that people with celiac disease tend to get diagnosed and heal their gut. People with NCGS, however, often don’t get diagnosed. In their case it’s not the celiac disease that gets them but the long-term inflammatory state that increases their risk of dying from another disorder.
Focus on Children
“Children diagnosed with Coeliac disease had a threefold increased risk of long-term mortality. This is in marked contrast to the experience of adult Coeliac disease where the long-term increase of mortality was modest. The increased mortality in children from external causes may reflect behavioral change associated with coping with a chronic disease and its treatment.” American Journal of Gastroenterology April 2007
FACT 4 - Having CD/NCGS and Not Ahering to a Gluten Free Diet Can Increase Your Risk of Death 6-fold. The Equivalent of 1/90th of a Slice of Bread Can Cause Severe Symptoms in the Most Sensitive. CD/NCGS is Permanent
“Death was most significantly affected by diagnostic delay, pattern of presentation, and adherence to the GFD…Non-adherence to the GFD, defined as eating gluten once-per-month increased the relative risk of death 6-fold…Our results emphasize the need for prompt diagnosis and treatment also in those patients with a minor or symptomless form of coeliac disease”
A Lancet study following up 1072 adult Celiacs and 3384 first-degree relatives after 20 years found the SMR of 2.0 (200%) i.e. if you have CD you are twice as likely to die early than someone without it. Remarkably, eating even small amounts of gluten, placed celiacs at increased risk of death.
Gluten Intolerance is Permanent
“Coeliac Disease is a permanent intolerance to gluten that results in immunologically mediated inflammatory damage to the small intestine mucosa” American Journal of Clinical Nutrition March 1999
Gluten-related disorders are permanent; while your gut may heal, your gluten intolerance remains and adding gluten back into your diet will eventually cause the inflammation to rear up again.
Studies have found that even after five years on a gluten free diet, the gut will eventually flare up if you return to eating gluten products.
In some cases even very small amounts of gluten can cause system-wide problems.
Nutrition Review in Sept 2004
A frustrated 34 woman went to a Celiac specialist to find out why, after following a gluten-free diet for a year she was still not better. Testing revealed her antibodies were still sky high and she had total villus atrophy and osteoporosis.
She was suffering from hair loss, poor skin and chronic fatigue, but had a good attitude. The specialist asked how strict her gluten-free diet was. After being told she was still eating the odd amount every month, she was told to cut out gluten completely. A year later her energy was a bit better and her antibody results were high normal instead of sky-high, but her endoscopy results were still bad and she still had hair loss and osteoporosis.
The specialist agreed she was indeed on a gluten free diet but then discovered the lady was a Nun, and she was eating a small piece of host (sacramental bread) daily. The specialist met the priest and asked for a sample of the host. The specialist measured it and found that a 30 mg fragment of wafer contains approximately 0.5mg of gliadin (1 mg of gluten).
The woman refused to give up her daily sacrament until her priest prevailed on her to do so. Eighteen months later the woman came back radiant with a full head of hair, a healthy small intestine and no chronic fatigue.
The fragment of the wafer was half a thumb size.
- Part 2 – Autoimmunity and Testing
- Part 3 - Differential Diagnosis and Next Steps
- Find out more about Niki here
- Dr. O’ Bryan’s 1 day Doctors training on Gluten on DVD for US Practitioner
- Dr O’Bryan’s 1 Day Training on Gluten for Practitioners in the UK
- Dr O’Bryan’s DVD on Gluten for patients in the US
- Dr. O’Bryan’s 1 day seminar on Autoimmunity