Celiac or NCGS is there a difference? Celiac (Coeliac in UK and Ireland) disease and the connection with wheat has been known about since the 1940’s and with gluten since 1952. Celiac disease is caused in genetically predisposed people by a reaction to a gluten protein called gliadin which can be found in wheat, barley, rye, spelt, durum, Kamut and triticale with some people also reacting to oats. Celiac Disease can vary from mild to severe usually showing destruction of the gut lining and is an Autoimmune disease.
Despite nearly 65 years of knowledge it is poorly diagnosed across all age groups and it is estimated that less than a quarter of people are diagnosed. To confirm diagnosis raised antibodies (IgA) and destruction of the villi in the gut lining have to be demonstrated. Certain populations have a higher incidence, the populations of Ireland and Italy appear to and also people with Downs Syndrome have an increased risk . Celiac disease is associated with a multitude of other chronic medical conditions, many of which are Autoimmune disorders and also some neurological disorders.
NCGS – Non Celiac Gluten Sensitivity was originally described in the 1980’s and only since 2010 has been included in the spectrum of gluten related disorders. It is also associated with Autoimmune disorders and neurological disorders where no small bowel disease has been discovered.
It is known that there may be a genetic predisposition but that a trigger such as surgery, infection, pregnancy and emotional stress can trigger symptoms of Celiac disease and NCGS.
The varied symptoms are common to both and can be:-
- Digestive issues, bloating, abdominal pain, gas, persistent constipation (a common sign of gluten intolerance in children), diarrhoea or symptoms of Irritable Bowel Syndrome.
- Chronic fatigue, Brain fog and feeling tired after meals that contain gluten
- Joint and muscle pains, Fibromyalgia
- Tingling in the hands and feet and/or arm or leg numbness (Peripheral neuropathy)
- Keratosis Pilaris – better known as ‘chicken skin’ on the backs of the arms or on the thighs
- Frequent headaches
- Dizziness and unsteadiness
- Frequent infections
- Autoimmune diseases – frequently more than one
- Dermatitis or Eczema
- Allergies, Asthma, Rhinitis and approx. 35% also react to the dairy protein (Casein) and some to Lactose
- Anaemia, Folate deficiency
- Eating disorders
- Ataxia (lack of voluntary muscle movements)
Approximately 35% of people who have intolerance to Gluten also have intolerance to Dairy protein(Casein) and/or Dairy sugar (Lactose) and 20% also have other, IgE allergies to foods, metals, animal hair or inhalants.
I was born around the time they discovered that Gluten was a problem for some people.
In my childhood I suffered from
- Persistent Constipation
- Brain fog, lack of concentration
- feeling tired and easily out of breath
- bloating and stomach pain
- ‘chicken skin’ on arms and legs
- joint and muscle pain -“growing pains!”
- frequent ear and throat infections and frequent antibiotics
I suffered at school because of this and I remember frequently being told off or having chalk thrown at me for not paying attention, I would miss bits of important information and then try to cover it up but usually ended up being embarrassed in front of the whole class and made to feel stupid. I think if it was a child like that now I would probably be classified as being on the Autism spectrum.
In my teenage years I still suffered from most of the above symptoms but discovered that my concentration improved with drinking coffee and taking vitamin supplements.
In my early adult years I suffered multiple Thrush infections, Urinary tract infections, Shingles and Glandular fever that left me with a post viral fatigue. In the 1970’s I married, had three sons (the first born with Down’s Syndrome). I had several chest infections including Pneumonia and Pleurisy. I had a Hysterectomy followed by infection and yet more antibiotics making a total of 5 courses of Antibiotics within 3 months and then I started to get severe arthritis in my hands, shoulders, neck, and sometimes knees and hips. I had trouble lifting and playing with the children, gardening and sleeping.
I started to experiment with diet. I used pulse testing to see if I could identify any problem foods and realised that flour, beef, soy and oranges were a problem and I felt much better when I omitted them but found it hard to stick to a diet when coping with a young family.
Then I decided to go Vegetarian which, without wheat and meat meant that I quick quickly became anaemic so after several months I gave that up and started to include more organ meat – chicken livers, lambs liver and pate and supplementing Vitamin B Complex and multi-vitamins – felt much better with increased energy. I attempted going Gluten free a few times but usually didn’t keep to it 100%.
I had minimal bowel symptoms. I never queried Dairy.
In the 1980’s I became more interested in the effects of diet on health, mainly because my Mother had been diagnosed with Rheumatoid Arthritis and my Father with Angina. I completed a course in Nutritional Medicine and started taking Fulvic Acid Minerals and Antioxidants and this really improved my health and energy, I had fewer infections but I still didn’t cope with any exercise regime on top of normal daily routine.
In early 2000 we took early retirement and moved to Spain. My physical health improved tremendously with the Mediterranean diet, Sun and exercise but then stress levels went through the roof with a progression of seriously sick relatives and friends over the period of about 6 years. During this time I had to return to living in the UK, sleep became very poor, anxiety levels were very high and I developed IBS, dry eyes and the joint and muscle pains returned.
Finally, when trying to treat my son’s worsening eczema and Autoimmune conditions (he is the son with Down’s syndrome) we did skin allergy testing which flagged nothing. We then tried a full elimination diet and although quite difficult and with some false starts, we both started to feel better and realised that Gluten, Dairy and Soy were a problem for both of us. The Doctor suggested going back on Gluten for 6 weeks so that we could test for Celiac disease but because the improvements were so profound we felt it was something we could’t entertain – especially knowing that the tests were not always conclusive. We were both free of arthritis symptoms, energy was good and my son’s eczema was almost clear for the first time in 25 years. I had no more IBS, no more sinusitis and I had lost 7lbs in excess weight.
So, at age 65, I know beyond any doubt that I cannot tolerate gluten, Dairy or Soy. How much better could my life have been if I had known that 60 years ago and not just 5 years ago! How much better would my Mother’s life had been by not being crippled by Rheumatoid Arthritis? How much money could be saved within our Health Service if we didn’t suffer Autoimmune diseases. That is the reason that I write this blog – in the hope that I can prevent some people going down this same route of ill health. Until we have a reliable test for Gluten Intolerance many people are at risk and do not know it.
Am I Celiac or NCGS? – it makes no difference – if I eat Gluten or Dairy I get sick and all the symptoms come back with avengeance. My son will sometimes react, usually after eating out, by either a flare up of Eczema or severe diarrhoea and stomach pains which we can now treat quickly with an anti-diarrhoea (Collis Browne), Silicogel and L-Glutamine. My reactions are not as severe as his but on recent testing to see if I could tolerate ghee I suffered bloating and pain followed by aches and pains and feeling mentally low with depressing thoughts – luckily short lived. A Wikipedia link to Gluten-related disorders with an explanatory chart here.
We appear to have an epidemic of Gluten related problems and therefore many people (some Celiacs included) are calling it a ‘FAD’ but in truth it is not a new epidemic but a breakthrough in science and a realisation that Gluten causes inflammation and in many people it leads to Autoimmune Diseases that may or may not include Celiac Disease but always involve gut damage in the form of Leaky Gut, immune system activation and raised Zonulin (a protein secreted into the gut by cells that line the gut wall). PubMed reference here by A Fasano.
The good news is that it is reversible and you can heal your body with the right diet and supplements and become a much healthier version of yourself, at any age. What I really want to see is better screening so that no one has to develop Autoimmune Disease in the first place. Watch this space – I think that this breakthrough is on the horizon.