In 2015 a group of experts came together to work out how to diagnose and test non coeliac wheat or gluten sensitivity.
Non-Coeliac Gluten Sensitivity (NCGS) is a syndrome characterized by intestinal (affecting the digestive tract) and extra-intestinal symptoms (affecting other areas of the body) related to the ingestion of gluten-containing food, in subjects that are not affected by either coeliac disease or wheat allergy.
Coeliac disease is a serious auto-immune disease that is triggered by gluten. Those with diagnosed coeliac disease must strictly avoid gluten for their lifetime. See my earlier post for an explanation of coeliac disease. Celiac disease: How gluten invades and sets up an auto-immune reaction.
Coeliac disease (CD) is diagnosed with specific tests which show antibodies are being made against deaminated gliadin peptides (a protein in gluten) and tissue transglutaminase (tissue transglutaminase is an enzyme that fixes damage in your body), as well as IgA endomysial antibody. A biopsy of the lining cells in the duodenum (part of the intestine) will confirm damaged cells typical of CD. People with coeliac disease have a specific genes that make them susceptible: over 99% of people affected possess either HLA DQ2, HLA DQ8, or parts of these genes.
Gluten is found in wheat, barley and rye, one in 5 people with coeliac also react to oat gluten called avenin. (Source)
A number of people notice they react to gluten containing grains, however when tested they do not have the specific coeliac disease antibodies. This condition is called non-coeliac gluten or wheat sensitivity (NCGS or NCWS)
In 2015 a group of experts met in Salerno, Italy and described the common and not so common symptoms reported by those with NCGS.
Symptoms to NCGS are different to FODMAP sensitivity, which are limited to gastrointestinal symptoms. The term FODMAP is an acronym, derived from “Fermentable Oligo-, Di-, Mono-saccharides And Polyols”. FODMAPs are short chain carbohydrates that are poorly absorbed in the small intestine, and many people with irritable bowel syndrome find they improve with a low FODMAP diet. People with NCGS will get a resolution of symptoms when they remove gluten grains, despite continuing to consume FODMAPs from other sources.
A range of signs and symptoms have been reported in association with NCGS. This table has been taken from the paper “Diagnosis of Non-Celiac Gluten Sensitivity (NCGS): The Salerno Experts’ Criteria”
The diagnosis of NCGS is made when the patient reported intestinal and extra-intestinal symptoms occurring after the ingestion of gluten, which improves or disappears when gluten was withdrawn from the diet, and recurs when gluten is reintroduced into the diet.
As you can see gluten has many effects in parts of the body outside the digestive tract. People’s symptoms typically surface in a few hours to 1 days after eating gluten. In more than half of these patients (in this study), the symptoms occurred within 6 hours after gluten ingestion; in about 40%, between 6 and 24 hours after ingestion; and in less than 10%, more than 24 hours after ingestion.
An earlier Italian study identified 486 patients with NCGS, and found there was associated autoimmune disease detected in 14% of cases.
Here are 2 graphs from the study – the first shows the percentages of people reporting gastrointestinal symptoms, the second – symptoms outside the gastrointestinal tract.
Aphthous stomatitis is mouth ulcer, aerophagia is swallowing air.
Laboratory tests showed low levels of ferritin, folic acid, and vitamin D in 23%, 5%, and 11%, respectively, of patients with suspected NCGS. The most common anti-body tested was anti-gliadin antibodies (AGA) with 25% having an IgG postive test, although in other studies it is as high as 56% (Serological tests in gluten sensitivity (nonceliac gluten intolerance) Volta 2012).
This study has limitations in that although each person was seen by a specialist, the symptoms were reported by the patient, and a placebo effect of the gluten free diet cannot be ruled out for some.
(Reference: An Italian prospective multicenter survey on patients suspected of having non-celiac gluten sensitivity. Volta, 2014)
In a more recent narative review of extra-intestinal diseases associated with NSGS the authors found:
Increased autoimmune disease; 29% in those with NCGS compared to 4% in control group.
A positive anti-nucleus antibody (ANA), a well-known marker of autoimmune diseases, was present in the 46% of NCGS subjects, compared to the 2% of controls, and ANA correlated with DQ2/8 haplotypes.
In the study the most frequently reported NCGS-associated autoimmune disorder was Hashimoto thyroiditis (29 patients). Psoriasis (4 cases), type 1 diabetes (4 cases), mixed connective tissue disease (1 case) and ankylosing spondylitis (1 case). (High Proportions of People With Nonceliac Wheat Sensitivity Have Autoimmune Disease or Antinuclear Antibodies.)
Neurological manifestations.
Headache is a very frequent finding in NCGS.
Depression has been shown in a double blind study (Randomised clinical trial: gluten may cause depression in subjects with non-coeliac gluten sensitivity – an exploratory clinical study)
Gluten ataxia (Gluten ataxia is better classified as non-celiac gluten sensitivity than as celiac disease: a comparative clinical study)
Gluten neuropathy (Neuropathy associated with gluten sensitivity)
Gluten encephalopathy; the most common symptom of this is migraine. It has been demonstrated that a gluten free diet improves the headaches and stops the progression of cerebral alterations detected at magnetic resonance imaging. (Migraine and coeliac disease). (Headache and CNS white matter abnormalities associated with gluten sensitivity)
Cases of Gluten Psychosis has been described: hallucinations, crying spells, relevant confusion, ataxia, severe anxiety and paranoid delirium occurred shortly after gluten ingestion and disappeared within one week of gluten free diet.(Gluten Psychosis: Confirmation of a New Clinical Entity.)
Psychiatric conditions including schizophrenia
Results are mixed, however gluten appears to play a role in many conditions. This reveiw is good; it covers anxiety, depression and mood disorders, ADHD, autism spectrum disorders, schizophrenia, epilepsy, and gluten ataxia. (Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity)
Schizophrenia: In this review the authors state “Several studies presented evidence to suggest that symptoms associated with schizophrenia were minimized when gluten was excluded from patients’ diets.” (A review on the relationship between gluten and schizophrenia: Is gluten the cause?)
Skin conditions
The possibility of a skin involvement in 18% of NCGS has been reported. Dermatitis, rash and eczema were the most common skin manifestations in NCGS, psoriasis has also been mentioned. (Cutaneous Manifestations of Non-Celiac Gluten Sensitivity: Clinical Histological and Immunopathological Features)
Rheumatologolical manifestations (joints / arthritis)
Ankylosing spondylitis: in a group of 30 subjects with ankylosing spondylitis, 11 had AGA positivity, while no patient in a control group exhibited this, and only one of the 11 was confirmed as having Coeliac disease. (The significance of coeliac disease antibodies in patients with ankylosing spondylitis: a case-controlled study)
Four cases of axial spondyloarthritis (2 ankylosing spondylitis and 1 psoriatic spondyloarthritis), where CD was ruled out, went onto remission after several months on a gluten free diet. Accidental gluten exposure in 2 caused the return of joint inflammation. (Non-celiac Gluten Sensitivity and Rheumatic Diseases)
In the above study 5 other case studies which include polyarthritis of unknown cause, polyarthritis associated with ANA and with anti-cardiolipin antibodies, refractory rheumatoid arthritis, Raynauds disease, systemic sclerosis and mixed connective tissue disease all showed striking improvement to a gluten free diet.
Fibromyalgia
Fibromyalgia is a disease characterized by widespread pain, often accompanied by fatigue, memory problems, sleep disturbances, depression or irritable bowel syndrome. In many case series, several NCGS patients complain of chronic muscle or joint pain, leg numbness, fatigue and headache, therefore it is possible that an underlying undiagnosed fibromyalgia could be present. In a Spanish study of 246 fibromyalgia patients following gluten free diet, 90 showed clinical symptom improvement. (Fibromyalgia and non-celiac gluten sensitivity: a description with remission of fibromyalgia) In 20 of this group who followed a gluten free diet for 16 months, 75% experienced full remission for pain. A gluten challenge resulted in symptoms recurring.
Reproductive disorders
Endometriosis: In a 2012 study 217 patients with severe painful endometriosis-related symptoms were tested on a gluten free diet and for 12 months. At enrolment time, the baseline values of painful symptoms were assessed by Visual Analogue Scale (VAS) for dysmenorrhoea, non-menstrual pelvic pain, and dyspareunia. At the end of 12 months, 156 patients (75%) reported statistically significant change in painful symptoms (P<0.005), 51 patients (25%) reported not improvement of symptoms. No patients reported worsening of pain. A considerable increase of scores for all domains of physical functioning, general health perception, vitality, social functioning, and mental health was observed in all patients (P<0.005). (Gluten-free diet: a new strategy for management of painful endometriosis related symptoms? Marziali, 2012) A 2015 study using a gluten free diet for 150 women with endometriosis and chronic pelvic pain also showed statiscally signifcant reduction in pain at 6 months in the gluten free vs control group. (Role of Gluten-Free Diet in the Management of Chronic Pelvic Pain of Deep Infiltranting Endometriosis, Capozzolo 2015)
Testing your response to a gluten free diet if you suspect NCGS.
First – if you suspect you are sensitive to gluten, it is very important that before you embark on a gluten free diet you get tested for coeliac disease. Once you are gluten free the test will not show up any reaction, and you do need to know whether you have CD or NCGS.
The Salerno group came up with a checklist of most common symptoms and those to monitor when testing a gluten free diet in those with NCGS. (This is done with the help of a nutrition specialist)
Mark the following symptoms out of 10. Then follow a strict gluten free diet for a period of time, and mark your symptoms out of 10 again to see if there is a change. You can retest your response to gluten by adding gluten foods back into your diet to see if they affect you. (Ideally in a clinical setting the response to gluten should be done in a double blind study, i.e. tested with the addition of bread that may or may not contain gluten)
- Abdominal pain or discomfort
- Heartburn
- Acid regurgitation
- Bloating
- Nausea and vomiting
- Borborygmus (rumbling or gurgling in intestines)
- Abdominal distension
- Eructation (belch)
- Increased flatus (gas in intestines, farting)
- Decreased passage of stools
- Increased passage of stools
- Loose stools
- Hard stools
- Urgent need for defecation
- Feeling of incomplete evacuation
- Extra-intestinal symptoms:
- Dermatitis
- Headache
- Foggy mind
- Fatigue
- Numbness of the limbs
- Joint/muscle pains
- Fainting
- Oral/tongue lesions
Well that’s it for this post, feel free to comment or tell me about your own experience. In the next post I will write about other components of wheat that might be contibuting to NCGS
