Non-coeliac gluten intolerance (GI)

Personally, I believe gluten causes me digestive symptoms, reactions and fatigue in People Without Coeliac Disease as gluten and symptoms in people without coeliac disease as  gluten is a trigger of digestive symptoms and fatigue “non-coeliac gluten intolerance”. As a sufferer of what the doctors have resigned to say is IBS in whom coeliac disease had been excluded whose symptoms were controlled on a gluten-free diet.
I eat a daily gluten-free diet, rarely eating gluten free bread or baked goods as I do not find them comfortable in the digestive transit, although small amounts are the key eaten proportionally with fruit, vegetables and proteins, as excess gluten-free could also cause discomfort.
My symptoms are worse within thirty minutes of gluten ingestion and had significantly worse bloating, abdominal pain, altered bowel pattern and fatigue, sleeplessness due to the food going through the system causing pain en route. 
Gluten is a trigger of  inflammation and/or gut dysfunction in IBS and gluten sensitivity the next is to determine whether it is the/or one of the causes of functional symptoms in patients with a positive anti-gliadin antibodies, and gluten restriction. 
It is disappointing but necessary to research into this as the only way to combat the enemy is to overpower it and conquer as much as possible to prevent gluten, lactose and lactase from excessively interfering my daily life preventing me from simple chores, employment, holidays, long journeys and walks. It is annoyingly inconvenient to consider a journey, stops, comfort breaks, traffic jams etc. There is also the transport and as anything in life the greater amount paid in means a greater satisfaction from what is gained so the more expensive a car the more comfortable you should be.
However, this problem is not comfort alone or removal of these products in one’s diet. At this precise moment of eating this blog I am suffering why? I do not know, as far as I am aware I have not eaten Something I react to but I face cramps and pain so more investigations to look into my daily diet. I have run out of soya yogurt and believe this aids my comfort. I will need to eat the yogurt and on another day have the same avocado egg salad, I fear the culprit is the salami which should be okay however may be contaminated or the ingredients may have recently been changed. That is the reality as well as difficulty with living with a food allergy or intolerance, however I have drank a mug of peppermint tea as this assists and aids digestion quickly!
Research has brought to light mast cells in the intestines or digestive tract and the link with the nerves and way the body works; of which my gastrointestinal consultant explained they merely want to prescribe you with antidepressants and see you on your way!
I apologise if this is information you know as my aim is to share to aid others suffering in addition to my own.
Mast cells have been implicated as increased activated mast cells are present in the duodenum, ileum and/or colon of individuals with symptoms of Inflammatory Bowel Syndrome. 
Mast cells are:
found resident in tissues all over the body,
associated with structures such as blood vessels and nerves,
in close proximity to surfaces that interfacing with the external environment
are bone marrow-derived
depending upon stem cell factor for their survival
express a range of phenotypic features within tissues which are determined by the local environment.
Withdrawal of required growth factors results in mast cell apoptosis
appear to be highly engineered cells with multiple critical biological functions
which possibly might be activated by a number of stimuli that are both Fc epsilon RI dependent and Fc epsilon RI independent. Activation through various receptors leads to distinct signaling pathways. After activation, mast cells may immediately extrude granule-associated mediators and generate lipid-derived substances that induce immediate allergic inflammation. Mast cell activation may also be followed by the synthesis of chemokines and cytokines. Cytokine and chemokine secretion, which occurs hours later, may contribute to chronic inflammation. Biological functions of mast cells appear to include a role in
innate immunity, involvement in host defense mechanisms against parasitic infestations, immunomodulation of the immune system, and tissue repair and angiogenesis.

The trigger in these individuals is believed to be some type of immune stimulating event such as an intestinal infection (thus the post-infectious form of IBS) or proteins in the gut such as foods and/or microbes which are sensed by the body as being foreign attackers. The role of microbes is getting a lot of scientific and research attention whereas food proteins as a cause of IBS, has on the whole been doubted by scientists and consequently ignored until just recently. Which I find is ridiculous as, when as an average person uneducated in this field, but suffering nonetheless, you can see a direct link as with other such food allergies to dairy, nuts, eggs, fish, shellfish, wheat, soya which have been for many years been related to the food

Quoting research findings of Wahnshaffe et al, Dr. Verdu points out the presence of genetic markers for celiac disease predicted responsiveness to a gluten-free diet in people with IBS. This is consistent with my clinical research findings of positive responsiveness to a gluten free diet in individuals with at risk genetics (HLA DQ2 and/or DQ8) without proven celiac disease, though many had positive AGA tests.

Furthermore, my data indicates a higher prevalence of these genetics in individuals with increased mast cells in their intestinal lining, that is so-called mastocytic enterocolitis (MCE) or as I prefer mastocytic inflammatory bowel disease (MIBD).  MCE or MIBD is gaining attention as an inflammatory process in some people with IBS. Treating such with medications and a gluten-free diet has resulted in very favorable response in most the patients I have diagnosed and treated.


The role of mast cells and gluten in IBS is something I will continue to explore as I have now accumulated almost 400 patients with MIBD, many of whom have had celiac genetic testing and tried a gluten-free diet. Stay tuned for more information on mast cells in gastrointestinal disease.

I will be staying tuned to discover more of what this doctor discovers and am pleased he is researching into this as with many it is when for a personal reason that they research into a field.
I am pleased that as with doctors researching into gastrointestinal problems so also have those whose children or relatives suffer from gluten and dairy intolerance develop products such as Jonathan Warburton who has produced gluten free breads which are delicious! It is great to have a variety of foods which taste good as for too long allergy sufferers have been ignored. My friends children who have suffered from birth with various allergies spent a childhood having to feel ostracised when out family, friends, playgroup’s, nursery, school, lunches, restaurants and/or cafés as no allergy free products existed except prescriptions until gradually shops sold more but at a high cost.


6 thoughts on “Non-coeliac gluten intolerance (GI)

  1. Hello Sharon , Im glad youve found out about mast cells .Aside from ige ,there are over 100 other research proven ways mast cells are activated . So your ongoing symptoms without any known triggers makes me “wander”if you have other triggers you are missing . These can be literally anything . But using a food and other trigger diaries and symptom log will reveal triggers .I will happily go through any diaries to help with known mast cell triggers 😉 Treatments wise research is showing h1 and h2 antihistamines and the mast cell stabiliser sodoum cromlyn -aka gastrocrom, nalcrom are useful to gain control and bowel healing . Ive just started a blog here .Im the author of .You may find it intersting .

    Bacteria and parasites directly activate mast cells via toll like receptors and secondary by t cell activation via the immune system picking up a bacteria is present . Also a 3rd system called compliment .

    I hope today is good day for you

    • Thanks Josie,
      I have been suffering for almost ten years and maybe before that but worsened post 30.
      I know my food triggers, as I completed a food diary and then reintroduced foods to eliminate and find my triggers which are primarily gluten and dairy however I can have a bout when fruits and vegetables irritate the bowel due to stress and hormones.
      I eat soya bio yogurt which maintains a healthy balance and eat fruit and vegetables earlier in the day to prevent over-reactions from food as then I lose unnecessarily weight.
      Enjoy your day!

      • The pollen would only be certain fruit and vegetables however as it happens due to stress or if something inflames internally. If I have a bout it is something which has caused a trigger to set off my symptoms. I can also have it even when I eliminate any fruit and vegetables from the diet. Consequently, I then do not think it is oral pollen syndrome.
        I do not suffer from hayfever per say, since I gave up gluten.
        Thank you, as I find doctors and consultants annoying and only want to give me anti-depressants which I refuse to take due to the awful reactions and complications they cause making me concerned I will lose my job through doing something dangerous.

  2. Hi Sharon, I understand, We know for scientific fact that stress activates mast cells , which are proven to be involved in ibs , mastocytsic entrocollitis , mastocytosis and connected conditions . I have condition connected to mastocytosis , were my mast cells are overactive all over my body and give me from swelling to anaphylaxis . http://www.mastcellmaster-a top Dr in mast cells- has all the latest research on mast cells and stress. through my personal research I have uncovered the research proof for many of the over 100 way mast cells are activated outside true ige (and oral pollen syndrome ) . So i absolutely understand how other triggers bedsides ige allergies cause these mast cell activation symptoms. You having problems with anti depressnats doesn’t surprise me either. In patients with known ige and other sources of activation-inc autoimmune – they put out a second release of serotonin in the evenings causing evening wakefulness , night sweats and other symptoms . most anti depressents act to increase serotonin so in those with this second release they are at risk of serotonin syndrome .

    Low mood /depression wise there is a known season affective disorder with histamine and pollens – . Also chemicals released from mast cells on activation affect mood . Histamine causes anxiety-that you don’t know why you feel it -not the patronizing look on a drs face and are you anxious !!!! prostoglandins also do this causing anxiety and low mood . There are a group of symptoms called brain fog-aka mixed organic brain syndrome . Anxiety, sudden anger/irritation , poor memory, poor concentration, poor sleep-due to chemicals stopping rem sleep . This is known medicine -tho not enough drs know about it .

    I have had the patronizing tap on the head and dismissal of my symptoms so I absolutely understand how frustrationg(im being polite ) it is .

    My website has lots of info on what ive been talking about xx

    • Thank you for sharing it is good to know we are not alone although my symtoms seem mild in comparison.
      I have heard of the SAD disorder as know people who suffer esp. if live further north in northern hemisphere!
      I will look at your website, thank you.

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