Coeliac Disease
When I was pregnant, I would projectile vomit if I ate even traces of wheat or gluten. So I got tested for Coeliac Disease (CD). It came back negative, but by that time I had eliminated gluten from my diet, so the test results were inconclusive. 13 years later, I now know I have genes for coeliac disease and I have passed these genes onto my kids. My choice now is do I eat wheat and gluten for six weeks, spend those weeks being very sick, get tested and regardless of the results, return to a gluten free diet (gf), because I'll feel much better? Or do I just remain undiagnosed because, for me, it's all academic anyway? In which case, I will (potentially) be one of the 53% of undiagnosed coeliac cases. Or I could have Non Coeliac gluten sensitivity (NCGS), which there's no test for.....
What is Coeliacs disease? How do you test for it and what does it mean to be on a gf diet? And how is it different from gluten intolerance?
First up: What is Gluten?
Gluten is a protein found in wheat, barley and rye.
Gluten Intolerance is...
Most people who say they are gluten intolerant, actually aren't. When people say they are intolerant to gluten, what they actually mean is they are intolerant to FRUCTANS. Fructans are found mostly in wheat containing foods, but also in garlic, watermelon or chickpeas. So a gf diet will help, but may not reduce all your symptoms AND you may be excluding foods you don't need to, such as rye based sourdough, as the fermentation process breaks down the fructans in the wheat flour.
Fructan Intolerance is when the bacteria in your your body cannot breakdown a CARBOHYDRATE, called a fructan. This means that this carbohydrate remains inside your intestines and bacteria break it down for you, producing methane gas which causes bloating, pain, discomfort, excessive flatulence and constipation and/or diarrohea.
Non-Coeliac Gluten Sensitivity (NCGS) - the real gluten intolerance
People with NCGS don't have coeliac disease, but do have symptoms when they eat foods containing wheat and gluten. Not much is known about this, but it's thought that most people who think they have this, actually don't and are intolerant to Fructans instead.
So what is Coeliac disease?
Coeliac disease is known as a "gluten allergy".
In actual fact, it's an Auto Immune disease which is triggered by gluten (a protein in wheat).
An autoimmune disease is when your bodys' immune system, attacks your own cells (instead of something that's actually bad, like a bacteria or virus).
In the case of coeliacs, when any gluten is eaten, it enters the gut and it starts an immune response where the immune system (the white blood cells and molecules called antibodies) launch an attack on gluten molecules, in the gut. And in the process, damage the cells that line the gut. This leads to inflammation of the lining of the gut, flattened microvilli, little finger like projections that are essential for absorbing nutrients.
Coeliac symptoms can occur at any age.
What are the Symptoms?
Symptoms range from nothing... some people have Silent Coeliacs and don't get immediate reactions, others' have very severe reactions immediately after eating gluten containing foods.
Symptoms can be:
Chronic or recurrent diarrohea,
Constipation
Vomiting
Abdominal pain
Irritability
Bloating
Anorexia (from not being able to absorb nutrition, due to the damaged gut lining)
Weight loss, low body weight and in children failure to thrive and/or delayed puberty
Other symptoms:
Deficiencies in all vitamins and minerals, but most commonly iron deficiency anaemia.
Mouth ulcers
Defects in tooth enamel
Dermatitis
Osteopenia or Osteoporosis (weak bones or bone disease)
Epilepsy
So how do you get tested for Coeliac?
There are a bunch of tests you need to get done to be tested for Coeliac disease.
1. The gene test - which tests for any Coeliac related genes
2. The IgA test which tests for gluten antibodies (the person must be eating gluten for this test)
3. A biopsy, where they take a sample of your intestine and look at it under a microscope, to see if any of the Coeliac related damage is present
You need both the IgA test and the biopsy done to be diagnosed with Coeliac Disease.
Pictured is my daughters genetic test for Coeliac. She has two "Coeliac" genes: one is a high risk gene, one is a low risk gene. This test is a simple blood test that looks at what genes you have. It does not confirm you have Coeliac, it simply looks at whether you have any genes for it, which increase your risk. For example, a person with no genes for Coeliac has a 1 in 100 or 1% chance of getting Coeliac. A person with genes for Coeliac increases their risk to 3 in 100 or 3%. A person with symptoms and the Coeliac genes risk increases to 5 in 100, or 1 in 20.
Put another way, 85% of people with Coeliacs, have the Coeliac genes, but less than 95% of people with the genes have the disease.
So what does this mean? Most people with Coeliac have the genes for it and there are definitely genetic factors involved as it is found in families. People have a higher risk of developing Coeliac disease if their siblings also have it. However, just because you have the genes does not mean you have or will have Coeliac disease.
The most common tests for Coeliac is an IGA test. That is a blood test which tests for a specific part of the immune system called an IGA-TTG (tissue transglutiminase). This will be high in people with active Coeliac disease. However, you MUST be eating wheat and gluten food for this to test positive. If you suspect you or your kiddy has Coeliac, do not remove wheat or gluten from your/their diet, until this test has been done.
If the result from the IGA test is positive, then you get a biopsy done, where they do a Duodenal biopsy and test to see if the microvilli are normal (no coeliac disease) or flattened and abnormal (coeliac disease confirmed).
So if you have the Coeliac genes, this does not mean you have Coeliac, it merely increases your risk, but not by a lot. If you are symptomatic, test positive for the IGA test when eating wheat and gluten and test positive for the biopsy, then you will have Coeliac disease.
So I have Coeliac, what now?
The only treatment for Coeliac is a gluten free diet. Even trace amounts of gluten can make a person with Coeliac sick. There are products on the market that claim they can help digest gluten. These products are not suitable for people with Coeliac Disease. If in doubt consult your health care practitioner.
Foods to avoid Wheat (most biscuits, pasta, flour, bread, cake, bakery goods, cereal) Rye Barley
Spelt
Semolina
and products made with them: bread, bagels, doughnuts, pasta, cakes, biscuits, muesli bars, cereals, milo, noodles, pastries, pies, rolls,
Foods that may trip you up Spices Sauces
Gravy
Cornflakes and rice bubbles
Deli meats and processed meats
Foods that are safe
Vegetables Fruit Meat Dairy (may need to read the label for some products, like yoghurt) Nuts, seeds, nut butters Chia seeds Polenta Amaranth Millet Rice Quiona Buckwheat
Arrowroot/Tapicoa flour
Sorghum
Oats???
20% of people with Coeliac will not be able to have oats. Oats contain a protein called Avenin, which is similar in its structure to gluten. Some people cross react to the protein in oats, but 80% of Coeliac have no reaction to oats. When buying oats, make sure they are gf. Oats that are grown in fields and processed in factories with wheat will have bits of wheat and gluten in them. This is called cross contamination. Oats that are gf, are simply grown and processed in places that don't have wheat. Currently, the Coeliac society does not recommend eating oats.
Cross contamination.
This may mean you need to use a separate toaster, or honey/jam/peanut butter jars. As above, if crumbs of wheat flour, bread or similar get into a person with Coeliacs' food, this can be enough to make them sick.
The Rub
Gluten free is a bit of a fad and because of this there has been an explosion of gf foods in our supermarkets. This is good because it increases the availability and selection of gf foods. BUT! Keep in mind that most of these foods, including staples like bread and cereal are ultra processed, mostly contain vast amounts of sugar, very little fibre or nutrition and are not great for our health.
I recommend you eat as many wholefoods as possible. Fibre can be an issue for people with Coeliac, leading to constipation, so making sure you're getting enough fruit and vegetables, nuts and legumes will help insure you are getting enough fibre.
For more info on Coeliac Disease check out: Coeliac New Zealand or the Coeliac Disease Foundation
Have you just been diagnosed with Coeliac? Have a kid with Coeliac and having difficulty getting them to eat well? Or you are intolerant or have a need to be gluten free and not sure how to go about it?
Contact me, I can help, by giving you personalised advice, during a 1 on 1 consultation.
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