- For Part 1 of this series of articles covering facts 1-4 read: Celiac Disease,Gluten Sensitivity and Chronic Fatigue Syndrome: Pt 1 Misdiagnosis and Mortality
- For Part 2 of this articles covering facts 4-8 read: Celiac Disease, Gluten Sensitivity and Chornic Fatigue Syndrome Pt 2: Autoimmunity, Cross-Sensitization, Testing
Read the final 2 facts 9-10 about Chronic Fatigue Syndrome (ME/CFS) and gluten sensitivity below.
FACT 9 – Research on Dietary Intervention in ME/ CFS is Mainly Based on the Classical IgE Mediated Approach to Food Allergy Which is Outdated
Despite clear evidence for non-IgE mediated food sensitivities such as IgG and IgA delayed sensitivities to foods like gluten, studies on CFS continue to ignore the research.
In the Scandinavian Journal of Gastroenterology in Sept 2012 in the paper called “Functional bowel symptoms, fibromyalgia and fatigue: a food-induced triad?” researchers reported:
“In a prospective study, 84 patients referred to our outpatient clinic for investigation of perceived food hypersensitivity were enrolled consecutively……Neither IgE-mediated food allergy nor organic pathology could explain the patients’ symptoms.”
The above paper did not test for CD, or NCGS nor IgG or IgA cross-sensitised foods, and reflects what Manu et al concluded back in 1993 below, which is essentially that if IgE mediated allergies are not identified, CFS patients’ assertions that they have sensitivities to food is mental or emotional in origin.
“Intolerance to various foods is reported often by patients seeking evaluation for chronic fatigue. To assess the prevalence and significance of this phenomenon we studied 200 consecutive patients with chronic fatigue who were given a comprehensive medical and psychiatric evaluation…
These data suggest that intolerance to multiple foods is probably not a cause or the effect of chronic fatigue, but rather one of the manifestations of the somatization trait expressed in these patients.
The food intolerances in the above study were assessed simply by asking patients which foods they were intolerant to. In classical IgE allergy, foods cause immediate and obvious reactions which can easily be self-identified, unlike IgG and IgA reactions where identification of the offending food is much more difficult due to the delayed reaction.
We know that people with Celiac disease (CD) may not improve just on a gluten-free diet but may need gut healing work as well. We know that in the most sensitive 1/90th of a piece of bread can cause symptoms for 6-8 weeks, and that people may have developed cross-sensitization to non-gluten foods such as instant coffee, all dairy and milk chocolate as was discussed in part 2 of these series of articles.
In the studies quoted below, ME/CFS patients may have failed to improve from restricting gluten because all gluten or cross-sensitized foods were not adequately restricted, and no specific intervention were done to heal the gut and reduce inflammation.
“A 24-week randomized intervention study was conducted with 52 individuals diagnosed with CFS. Patients were randomized to either a low sugar low yeast (LSLY) or healthy eating (HE) dietary interventions…In this randomized control trial, a LSLY diet appeared to be no more efficacious on levels of fatigue or QoL compared to HE.”
In the 2012 Trabal et al study in the Spanish Journal Nutrición Hospitalaria a cross sectional pilot study with 28 ME/CFS patients assessed their dietary eating habits with food frequency questionnaires. They reported that the digestive symptoms of the 15 patients restricting gluten and 22 restricted dairy did not improve and concluded:
“Dietary restrictions should be based on a proven food allergy or intolerance. Dietary counseling should be based on sound nutritional knowledge.”
Despite these negative studies, Logan and Wong reported on several studies where dietary restrictions made a large improvement in ME/CFS:
Nisenbaum et al presented an abstract at the American Association for Chronic Fatigue Syndrome conference in Seattle in January 2001, showing that 54 percent of a sample of CFS patients had attempted unspecified dietary modifications. Of these individuals who modified their diet, 73 percent reported dietary changes were beneficial in reducing fatigue.
In an Australian study, CFS patients eliminated wheat, milk, benzoates, nitrites, nitrates, and food colorings and other additives from their diet…Of the CFS patients who complied, the results were remarkable: 90 percent reported improvement in the severity of symptoms across multiple body symptoms, with significant reduction in fatigue, recurrent fever, sore throat, muscle pain, headache, joint pain, and cognitive dysfunction. Furthermore, the elimination protocol resulted in a marked improvement in IBS-like symptoms among allpatients; a significant finding because CFS patients have a high rate of IBS.
The results of this study support the findings of Borok published in the South African Medical Journal over a decade ago.Borok cited a strong correlation between CFS and the presence of food intolerance. He reported alleviation of chronic fatigue among CFS patients (n=20) after removing certain foods from the diet, with milk, wheat, and corn among the top offenders. Alternative Medicine Review 2001
No studies to date have adequately assessed the presence of Celiac disease or Non-Celiac-Gluten Sensitivity (NCGS) in ME/CFS. Nor have studies tested the effectiveness of a strict gluten-free diet and with a gut healing anti-inflammatory intervention. These studies are needed before we can assess the impact gluten and gut inflammation has on this and other related disorders.
FACT 10 – Every Person With Chronic Fatigue Syndrome Should Be Screened for Coeliac Disease and Non Celiac Gluten Sensitivity (NCGS) as Part of the Differential Diagnosis of the Condition
FACT 10 – Every Person With Chronic Fatigue Syndrome Should Be Screened for Coeliac Disease and Non Celiac Gluten Sensitivity (NCGS) as Part of the Differential Diagnosis of the ConditionSeveral factors suggest CD and NCGS should be part of the differential diagnosis for chronic fatigue syndrome (ME/CFS).
Neurological symptoms in CD are common (as was discussed in part 1 of this blog series). Back in 1999, Luostarinen et al, in European Neurology, stated that CD should be considered in all patients presenting with neurological disturbances such as memory deficits and ataxia of unknown etiology, two symptoms that commonly occur in ME/CF.
In their paper “Gut inflammation in chronic fatigue syndrome” in Nutrition and Metabolism in 2010, Lakhan et al discuss the evidence for leaky gut and inflammation in CFS at length. Citing studies by Maes et al, Logan et al, Sullivan et al, Rao et al and Sheedy et al they concluded imbalanced gut bacteria linked with gut inflammation and gut permeability is common in ME/CFS.
Small-fibre neuropathy may be common in ME/CFS/FM and muscle pain is. Symptoms of small-fibre neuropathy including tingling, burning pain and tightness, stabbing pain, pins and needles, itchiness and intermittent numbness in different parts of the body, are commonly experienced in ME/CFS and gluten triggered autoimmune ganglioside antibodies can produce all these symptoms.
The Rituximab studies with CFS patients and other studies suggest autoimmunity is likely to be present in a subgroup of CFS/ME patients. Celiac disease and Non-Celiac-Gluten-Sensitivity (NCGS) may be able to trigger autoimmune processes by triggering B Lymphocyte activation. Rituximab’s reversal of (gluten-triggered) B-lymphocyte activation could, therefore, account for some of the progress some ME/CFS patients make on that drug.
The landmark 2000 Lancet study on non-IgE mediated food sensitivities (“Relation between food provocation and systemic immune activation in patients with food intolerance”) indicates that people with non-IgE mediated food intolerances experience significant elevations in inflammatory cytokines (interleukin-4, interferon gamma, TNF-α) when given a dietary challenge of dairy and wheat.
The authors noted that cytokine elevations could account for the post-food challenge symptoms experienced such as headache, myalgia, joint pain, and gastrointestinal disturbance – all of which are common in ME/CFS.
“We found that food provocation in food intolerant patients was characterised by a general and systemic immune activation accompanied by an increase in systemic symptoms. Our findings might be important for the understanding of the mechanisms involved in the pathogenesis of food intolerance.” Lancet July 2000.
- Dig Deeper: Check out the story of a woman who’s severe headaches disappeared after changing her diet.
Other more direct links to coeliac disease and chronic fatigue syndrome exist. Skowera et al found a high prevalence of markers of Celiac disease in 100 CFS patients in 2001. Empson’s 1998 critique of the diagnostic criteria for ME/CFS asked why ruling out CD was not included.
“given our prevalence of 2%, and the fact that there is a treatment for CD, we now suggest that screening for CD should be added to the relatively short list of mandatory investigations in suspected cases of CFS.”Skowera et. al. 2001
As we have discussed, sensitivity to gluten is likely much higher than 2% in the CFS population, as the diagnosis of CD requires total villous atrophy and thus misses out on gluten-sensitive individuals with partial or no villous atrophy in the non-celiac gluten-sensitive group.
A preliminary paper in the International Journal of clinical practice in 2001, found no link between CD and Chronic Fatigue Syndrome, but again the standard CD test used in this study completely misses the NCGS group with partial villous atrophy and gut inflammation. As we pointed out in Part 2 of this series of articles, people with NCGS may have no overt gut involvement at all but still test positive for gluten antibodies.
The standard CD antibody test may, because it doesn’t test for all twelve gluten peptides, underdiagnose gluten sensitivity by as much as 50%.
Why Are so Many More People Sensitive to Gluten Than Thought?
Why Are so Many More People Sensitive to Gluten Than Thought? A popular reason given for sensitivity to gluten is due to genetics. The “Paleo” diet movement has often pointed to research suggesting pre-agriculture Stoneage man may have been free of many of the complex chronic illnesses we face today. Some evidence suggesting increased rates of chronic illness occurred in the post-agricultural era, suggests the human genome was not fully equipped to deal with the agricultural revolution and the consumption of grains.
A recent study of the genetics of 2500 Australians published on BioMed Central in August this year found that over 50% of the Australian population have the genetic propensity to develop celiac disease. Researchers are now looking to find out why some people develop the disease and others don’t.
However, a remarkable study from the Mayo Clinic in 2009 suggests a different kind of genetic issue may be in play. This study cites genetic Modification (GM) of wheat as one of ten factors that may account for the 400% increase in undiagnosed CD since the 1950s.
“The prevalence of undiagnosed CD seems to have increased dramatically in the United States during the past 50 years.” Gastroenterology June 2009
In this study over 9000 blood samples gathered at the Warren Air Force Base in Wyoming between 1948 and 1954, were tested for autoantibodies to gluten, and then compared to age or birth-year matched recently collected from Olmsted County, Minn. Researchers found that young people today are 4.5 times more likely to have celiac disease than young people were in the 1950s, while those whose birth years matched the Warren AFB participants were four times more likely to have celiac disease
Joseph Murray, M.D., the Mayo Clinic gastroenterologist who led the study stated:
“Celiac disease is unusual, but it’s no longer rare…Something has changed in our environment to make it much more common. Until recently, the standard approach to finding celiac disease has been to wait for people to complain of symptoms and to come to the doctor for investigation. This study suggests that we may need to consider looking for celiac disease in the general population, more like we do in testing for cholesterol or blood pressure.”
Murray suggested genetic modifications to produce hardier, shorter, and better-growing plants may have contributed to recent increases in gluten sensitivity. In an interview in the Mayo Clinic newsletter in 2010 Dr. Murray listed several other possible environmental causes of increased celiac disease. The “hygiene hypothesis” suggests our modern emphasis on cleanliness confuses an immune system adapted to a less clean environment so much that it accidentally turns on the body. Another potential culprit is a 21st century diet that features novel ways of processing wheat. “Many of the processed foods we eat were not in existence 50 years ago” Murray said.
What About GMOs, the modern form of Genetic Modification?
Genetically modified organisms (GMOs) are plants or animals that have been genetically engineered with DNA from bacteria or viruses or other plants and animals. Some researchers are concerned with the immune reactions foods that are “new to nature” may cause.
The vast majority of wheat grown in the US and Europe is not GMO but the the majority of corn (maize) (88%) and 93 percent of soy grown in the US is GM. Although Europe rejected GMO for direct human consumption, the increasing use of GMO in animal feeds suggests GMO products are making their way into the diets there.
Given that old-fashioned forms of genetic modification of wheat have created a “new-to-nature” food which the Mayo Clinic site as one likely cause of increased immune system sensitivity, is it possible we will find increased immune system sensitivity to GMO corn and soy as well, and that reactions to these foods are not just due to cross-sensitivity to gluten?
The ongoing debate on health concerns about GMO is controversial and will be covered in a separate blog post.
I Have Chronic Fatigue Syndrome – What Can I Do To Determine if I have Celiac Disease or Non-Celiac-Gluten Sensitivity?
How Do I Get Tested?
Antibody Testing – First, have the antibody blood test done for CD. If that comes back negative, check for NCGS first by Array #3 antibody testing from Cyrex Labs in the USA or Regenerus Labs in the UK. If that’s not available, a trial period of eliminating gluten is rational.
Endoscopy – If you are having an endoscopy/biopsy done request that an IEL (Intraepithelial lymphocytes) count be done to assess inflammation in the gut. Most pathologists don’t do it but it’s easy and inexpensive (about $40). This test will determine if you fall into the inflammatory sub-clinical group of NCGS patients.
Cross-sensitized foods – If the Array 3 comes back positive, you can then request Array 4 from Cyrex labs to test for cross-sensitized foods. The lab automatically saves the original blood sample for 3 months so another blood sample is not needed.
You may already know you have some form of gluten sensitivity; to confirm this, do the same test as above. Note: don’t worry if you have not eaten gluten before doing the test and DO NOT go back on gluten for the test because it can have very adverse effects on some patients. Much of the time, even if you thought you were gluten-free, you’ve probably still been exposed, unknowingly and this testing will confirm that.
How Do I Follow a Gluten-Free Diet?
How Do I Follow a Gluten-Free Diet?An important fact is that mortality rates rise after the first year of going gluten-free possibly due to gluten withdrawal and because blood sugar problems arise as some people start to skip meals.
Cardiovascular disease was the most common cause of death in Coeliac disease, followed by malignancy. The highest HRs were seen in the first year after biopsy, with an HR of 3.78 for death due to malignancy and 1.86 for CV death.
Journal of the American Medical Association.
Dr O’Bryan recommends a “Modified gluten-free” diet, which is essentially a gluten-free diet designed to manage blood sugar imbalances and the crashes which often occur in the early withdrawal phase from gluten. A low sugar diet, eating five meals a day, and other standard recommendations to manage blood sugar levels are needed to prevent blood sugar falling too low or rising too quickly.
Following a gluten-free diet when even a crouton in your salad can cause problems takes time to master. (Did you know gluten is present in cosmetics and personal hygiene products too? That gluten doesn’t go through your skin; instead it gets inhaled,and in the very sensitive can cause adverse effects.)
Dr O’ Bryan’s DVD for patients, where he works with an experienced gluten-free chef, an be very helpful. Sharing the same toaster as one used for bread containing gluten has been found to affect people with celiac disease, so it would be best if the entire family goes gluten free. Hence Dr O’Bryan recommends the entire family sits and watches the DVD for patients together.
I have provided a short summary of these series of 3 articles on my blogsite and a full set of initial guidelines to transition successfully off gluten for free on my blogsite here: How and Why to go Gluten Free.
Many free resources for living gluten-free can be found online; a short list is provided below.
How Do I Heal My Gut?
How Do I Heal My Gut?It is clear that even people with confirmed cases of CD often do not completely recover after going on a gluten-free diet, and that gut healing and anti-inflammatory intervention with follow up testing may be required as well. This is a topic that will be covered in the next series of articles. So stay tuned folks!
Resources
Free Info For Patients
- www.Celiac.com, www.Celiac.org, www.celiaccentral.org in the USA
- www.coeliac.org.uk for UK
- More free information is available in the “Gluten World” section of Dr O’Bryan’s website at www.TheDr.com
- Free article on Niki’s blogsite here: How and Why to go Gluten Free.
Read the First Two Part’s of Niki’s Gluten Intolerance Blogs
- For Part 1 of this series of articles covering facts 1-4 read: Celiac Disease,Gluten Sensitivity and Chronic Fatigue Syndrome: Pt 1 Misdiagnosis and Mortality
- For Part 2 of this articles covering facts 4-8 read: Celiac Disease, Gluten Sensitivity and Chornic Fatigue Syndrome Pt 2: Autoimmunity, Cross-Sensitization, Testing
Hi, I recently took a genetics test thru 23andme, and they told me that I tested positive for the celiac disease gene and recommended I eat a gluten-free diet. I have been gluten-free for four years now, and following a paleo/GAPS diet with little improvement. There were many gluten-free foods I was eating that were still giving me symptoms, and I began to think I was allergic to all foods. Then I read about high-histamine and dao deficiency.
http://www.deficitdao.org/deficit-dao.php#.UkskrSjT1jV
I also read that people with a mutation in the rs1049793 SNP have low dao levels.
http://www.deficitdao.org/factores-geneticos.php#.UkslzijT1jU
So I went into my raw data at 23andme and searched to see if they had tested this SNP and sure enough, I had a mutation in it.
So now, I need to eat a gluten-free, low-histamine diet. No more fermented foods or bone broth for me.
Hey, thanks for the information Dana. A low histamine diet, hugh – isn’t that something.
How are you doing now?
In the MCAS (mast cell activation syndrome) circles we talk about DAO and making sure we are not lowering ours. Since we have issues with histamine release from the mast cells. Most of us do go off of gluten because we have figured out it makes us feel better. Even if we are not celiac.
One little FYI, Tagament will lower DAO. So, we have found it’s best to not use that as our H2.
http://ajcn.nutrition.org/content/85/5/1185.full
With MCAS we have to use H1 (Allegra, Claritin, Benadryl) and H2 (Zantac, Pepcid) (sometimes more than once a day for the H1 and H2’s) and some use Singular which is a leukotriene receptor antagonist and most of us use a mast cell stabilizer (GastroCrom, ketotifen). There are some that also use aspirin. (What this does is cause a slow release of a mast cell degranulation instead of a big dumping action that can occur when we have a reaction. I wasn’t able to use this treatment.)
It is best for us to not only watch our histamine forming foods, but also eat foods that are antihistamine type foods. That’s just as important.
(I just checked my 23&me and I’m okay on my snps. But still find staying away from gluten is what’s best for my body – especially because of my MCAS.)
Issie
Question for you – below on this thread! Thanks
Elisabeth
Many thanks for this informative and helpful series. In the past, I found a restricted diet to be very helpful (used the LEAP blood test to help determine which foods to avoid so my gut could heal). I was very fortunate using this test. My symptoms improved (some greatly) and my belly bloating went away, but I had to move and went back to square one. I need to move again and hope to be able to get tested and get my diet/nutrition on course in the next months. As previously said by others, it’s easier said than done, especially in the midst of traveling! I really appreciate the encouragement and help here.
Thank you,
Susan
Thanks Susan. Did you go off your diet when you moved? Was that the problem?
I did the diet for around 6-8 weeks and it ended when I moved. I’m not sure that I can pinpoint anything, but the experience convinced me that diet is an integral part of addressing my health problems. Like others, it’s a long story. I also have chronic Lyme and chronic mycotoxin poisoning from several apartments I lived in after I moved to DFW in 2004. It started with a chronic tiredness (not debilitating) after mono in 1995 and it is suspected that I first contracted Lyme about 20 years ago.
These illnesses have impacted my immune system greatly and given me CFS/ME symptoms (eg: MRI shows swollen brain, bed bound for 8 years, etc.). I’ve never sought help from a CFS doctor for diagnosis/treatment, because I spent a decade with “top” traditional doctors who ended up stumped and labeled it depression/ anxiety. I wasn’t diagnosed with Lyme until 2010 and mold in 2012. I’ve seen a couple of AAEM and ILADS doctors and then traveled to see if a different location would help my symptoms and perhaps allow me to be well enough to take antibiotics.
I learned about the “location effect” for mold illness and began traveling last March. Traveling ruined my diet, but I have learned much about my immune system’s reactions to irritants. Some symptoms improve in regions that are drier with fewer mold spores in the air (balance, brain fog, nausea, etc.), but they have not gone away. Some new or worsened symptoms because of reactions to the vegetation and pollution. Chemical sensitivity problems have increased from staying in hotels. Just the normal menu of confusing symptoms that can wax and wane!
Susan
I’ve moved around quite a bit -from dry to wet climates – without noticing significant changes in my health. Individual buildings do make a major difference – that’s what I need to watch for.
Good luck with the diet. Niki has a ‘Healing the Gut’ blog coming up.
Thanks I found that informative. There’s a lot more info available now. When I was first tested it was pretty much either you have CD or nothing. Now there is at least some recognition that many more people may have variations of sensitivity.
Going gluten free is very, very difficult. As the article stated, there’s a tendency to skip meals because gluten is in everything including ice cream. It is a lot easier than it was 5 years ago.
I found it encouraging that the Mayo was directly implicating GMs as that doesn’t seem to be politically correct. If not GMs than something else we’re being exposed to in recent history. I certainly didn’t have this problem when I was younger.
Dana – Is this the SNP your referenced regarding slowing DAO
rs1049793(C;C)
Is the C;C variant the one that slows DAO?
I’d love to read more about this – do you have any resources that you could direct me to?
Thanks so much!
Elisabeth
This came in on another page
Have had John Eaton’s Reverse Therapy and this has been my way out of CFS. Am having to work at regaining fitness after being sick for 30 years. Have had to cut out all grains. Get quite depressed if I have tiniest bit of wheat. Have been eating raw for nearly 7 years. THat has been great. Don’t take any supplements or drugs as my body rejects them. Had to go off Zoloft which was hard but so glad I did.
I was diagnosed with fibromyalgia about 8 years ago and chronic fatigue hit me 4 years ago and is still getting worse. Presently I’m one month into a gluten-free diet and my doctor, who specialises in pain management, says some of his fibromyalgia patients who tested negative for celiac disease have had a reversal of their fm after 3 months of gluten free diet. Time will tell with me.
I would like to mention that when I come across articles that say our ancesters 100’s of years ago didn’t have the types of illnesses we see today, that they also had very short lifespans compared to our’s, thus much less time to develop immune, heart, diabetic, etc, etc, etc, problems. It’s something to keep in mind when reading articles claiming we should go back to the old way of doing things. I’m not referring to any particular article, just thinking outloud on paper.
Another thought is I’ve never seen a comprehensive poll that has been taken to see if there is any commonality of lifestyle in fibromyalgia/chronic fatigue sufferers prior to onset of their conditions.
Thanks Anne, good luck with the gluten free diet.
I just read about the health of enlistees for the Civil War. It turns out that alot of people were in terrible shape back then, probably, they thought due to exposure to lots of infectious agents in childhood.
I have Celiac Disease and was told at the time it was discovered 20+ years ago that I didn’t have any villi left in the upper part of my intestines. I have a lot of Irish ancestors and Celiac Disease is extremely common in Ireland and has been for a very long time. It is estimated that 1 in a 100 in Ireland has celiac. We believe my Grandfather had Celiac as he always had stomach problems and wouldn’t eat regular bread. The only thing he would eat was corn bread. Yes it can be hard to avoid but the consenquenes of eating it for me are extremely severe. Good luck Cort on you diet.
I’m at least a month in on my gluten free diet. Gut issues are substantially reduced although I’m also doing alot of mind/body stress reduction work which may be responsible, as well.
Meat is food, plants are drugs. The last ice age, which ran from about 110,000 years ago to 10,000 years ago played a major role in the human evolutionary diet. All year around, there was very little edible vegetation for us except possibly in the most equatorial regions of the planet.
Even now, 99% of the vegetation on earth is inedible for humans. Most humans evolved primarily as hunting carnivores. Our modern love affair with fortified plant crops mixed with seed oils and sugar makes it very difficult to accept this at an emotional level. But, it is true.
Fatty meat and fish, salt, and water is what your body wants to thrive. Everything else has to be detoxified and removed. And, there is a limit to how much garbage the human machine can process. There is no such things as a phytonutrient.
Those whose ancestors evolved near the equator have a higher tolerance for plant chemicals and might “possibly” have higher folate requirements, as a result. But for the most part, folate requirements are grossly overestimated for the public at large.
If you are gluten-intolerant don’t feel bad. It’s OK because wheat isn’t food anyhow. Just look at a wheat field and you’ll know what I mean.