Eat to Thrive Podcast #5: Coeliac disease
This month, special guest - and fellow Associate Registered Nutritionist - Pip Meads from Pure and Simple Nutrition joins me in the studio, where we have a chat about Coeliac disease.
So Pip, what is Coeliac disease?
It's an auto-immune disease that leads to damage in a certain part of our digestive system whenever gluten is eaten. The immune system treats gluten as the enemy, and this leads to inflammation and damage to the tiny little finger-like projections called villi that line the small intestine. The small intestine is where most of the nutrient absorption occurs in our gut, and the villi are designed to increase the surface area, maximising the amount of nutrients we can absorb from our food during the digestive process. When these villi are damaged in this way, we can't properly absorb the nutrients from our food, and this can lead to deficiencies in many nutrients. Deficiencies in iron, calcium, vitamin B12 and folate are common among people with undiagnosed Coeliac disease.
How do you develop Coeliac disease?
As well as being an auto-immune condition, Coeliac disease is hereditary (meaning you can inherit the genes for the disease from your parents). If you have a close relative with Coeliac disease it doesn't mean you will definitely develop it yourself, or even inherit the genes, but it's a good idea to be aware that you have a much higher chance of developing it than the average member of the population. It can also develop at any stage of life - I was diagnosed at age 35. It's estimated that 1 in 70 New Zealanders have Coeliac disease, but up to 80% of those people are unaware they have the condition.
What are some common symptoms?
Symptoms can vary a lot from person to person, and can be similar to symptoms experienced with other diseases - like bowel cancer, Crohn's disease and Ulcerative colitis, and also Irritable Bowel Syndrome. That's why its really important if you are experiencing any of these symptoms to go and get checked out by your GP to eliminate other possibilities.
Some of the most common symptoms are:
anaemia (very low iron levels)
weight loss (unintentional)
cramping, bloating and flatulence (wind)
nausea and vomiting
If you think you might have Coeliac disease, Coeliac New Zealand has an online assessment tool that you can use to find out whether you are at increased risk. This being said, if you are experiencing any of the above symptoms often, you should seek the advice of your GP, even if the online tool indicates you are not at risk of Coeliac disease - something else may be going on.
Ok, so how is Coeliac disease diagnosed?
It is a bit of a process, but the most important thing is NOT to go on a gluten-free diet if you think you might have Coeliac disease! This is to ensure the immune response will be present and detectable during initial testing - blood tests to measure the presence of antibodies your body produces in response to gluten. If the blood tests are positive, the "gold standard" diagnostic test is a small bowel biopsy, taken via an endoscope. These little samples of your small intestine are then examined under a microscope to look for telltale signs of damage - including atrophy of the tiny villi, smoothing out of the lining of the bowel, and an increase in the number of a specific type of white blood cell found in the immune system.
You can also be tested for the gene for Coeliac disease (to identify if you are at increased risk), but this doesn't take the place of a diagnosis.
Is there a cure for Coeliac disease?
The short answer is no.
There is some developing research exploring treatment options, but as yet there aren't even any medications approved for the treatment or management of Coeliac disease.
So how do you manage the disease?
The only option is to maintain a strict gluten-free diet for life. Once the gluten has been removed from your diet, the process of gut healing will begin. It can take two years, sometimes longer, for the gut to recover completely, and for nutrient absorption to get back to normal.
So what is gluten exactly?
Gluten is a sticky, elastic-like protein found in grains such as wheat, barley, rye and oats. It acts like a glue, and gives bread, cakes and muffins their lovely springy soft texture. Gluten is also found in a wide range of other foods too - some might surprise you - like soy sauce. Gluten can also be hidden in things like lipstick, mouthwash, toothpaste and even play dough! It is so important to learn how to read labels. Coeliac New Zealand can support you with information on how to navigate the supermarket, and select foods that are safe for you to eat. The "Crossed Grain" logo on the front of packets is the one to look for. This means that the manufacturers have gone through a rigorous process to ensure their product is safe for people with Coeliac disease.
One of the hardest things I had to give up was oats - I love my morning porridge! Oats contain a protein called avenin, which is the gluten protein specific to oats. Around 1 in 5 people with Coeliac disease will react to this protein, and incur damage to their gut. This internal damage can occur with no obvious symptoms, and since the only way to be sure that eating oats is ok for you is to take a look at your small bowel via an endoscope, Coeliac New Zealand advises those with Coeliac disease to avoid oats. I'm finding other products and grain replacements to fill that porridge gap!
You obviously have to be really careful when eating at cafes and restaurants!
Yes - it can be hard as often food is genuinely gluten free, but may have been handled by the same tongs as something containing gluten, or may be sitting right next to a gluten-containing item and be cross-contaminated. When such a tiny amount of gluten can make you feel so sick, it can feel a bit like Russian roulette. More often I just play it safe and have a stash of snacks with me - nuts, seeds, some of the nicer gluten-free muesli bars, and fruit. Fruit is great, it's naturally gluten-free!
I guess sometimes it can still happen. What does it feel like when you inadvertently eat gluten?
Just like the symptoms of the disease, the effect of eating a bit of gluten, or "being glutened" can vary a lot from person to person. You can experience headaches, diarrhoea (let's just say you don't go too far from the toilet), stomach pains and tiredness. Sometimes the tiredness can last for a couple of days.
Is there such a thing as non-Coeliac gluten sensitivity?
This is another area that researchers are exploring. Non-Coeliac gluten sensitivity is a condition where symptoms such as bloating, diarrhoea, weight loss and abdominal pain are triggered by eating foods containing gluten, but in the absence of Coeliac disease or an allergy to wheat. Once again, these symptoms are common to a few other gut health issues, the most common being Irritable Bowel Syndrome (IBS), making it hard to distinguish the cause. There is currently no lab test to diagnose non-Coeliac gluten sensitivity, and research suggests that gluten alone may not be responsible for the symptoms. Other possible explanations include malabsorption of certain carbohydrates - FODMAPs - or "Fermentable Oligosaccharides Disaccharides Monosaccharides and Polyols". Some people will react to one or more of these types of carbohydrates and won't digest them as well, and they will experience many of the symptoms mentioned. Identifying the FODMAPs you react to through an elimination diet and a re-introduction phase is currently the best way to manage IBS, but this process needs to be undertaken with the supervision of an appropriately experienced and qualified Dietitian or Nutritionist. It's really important to seek medical advice before you start restricting or eliminating foods from your diet, as you could end up on an unnecessarily restrictive diet which is both hard to live with and short of many essential nutrients.
If you have been diagnosed with Coeliac disease, where can you go for support?
We are really lucky to have an organisation like Coeliac New Zealand which is dedicated to providing information, support and guidance to those diagnosed to those with Coeliac disease, another related condition called Dermatitis Herpetiformis, and anyone else on medical advice to follow a gluten-free diet. They offer membership to individuals, health professionals (it's a great way to keep up with the latest research), and food industry professionals. As a member of Coeliac New Zealand you will receive many benefits including access to a members only area on the website, printed resources, access to support groups and kids' clubs, special offers, and a bi-annual magazine. Individual membership costs $57 per annum (with a one-off joining fee of $35), and this annual fee is discounted to $47 for those aged 65 years and over.
Coeliac New Zealand Area Coordinators like myself organise get-togethers and provide additional support and guidance locally. If you need some help navigating your way around the food landscape following your Coeliac diagnosis, we are here to help!
Canterbury Area Coordinators for Coeliac New Zealand:
Pip Meads and Rob Rae
Pip, do you have some "top tips" for eating out and travelling?
One of the biggest challenges I have found since my diagnosis would be eating out. I don't like being the person in the group that has to ask questions about the menu, or double-check that gluten-free actually means gluten-free for someone with Coeliac disease! Yes it might be labelled "GF" but does that mean it was prepared in a gluten-free environment? Little things like using the same knives to cut normal bread, using the same toaster as bread containing wheat, the same deep-fryer used to cook crumbed foods, or placing gluten-free food in cabinets right next to non gluten-free items can all contaminate gluten-free food. Most of the time it works out ok, but I can still get "glutened" every now and again.
ask questions if you are unsure
if you are booking ahead, make sure to mention that someone in the group has Coeliac disease
ask around the support groups online to see if anyone has been there before, or has any recommendations
take some snacks with you when you go out, in case you get caught short - containers of nuts and seeds, muesli bars, fruit, peanut butter on rice or corn thins
use toaster bags at home or when travelling (prevents cross contamination, and you don't need to buy another toaster for home)
if you are unsure, don't eat it!
stick to what you know - a lot of foods are naturally gluten-free, like fruit and vegetables
learn to read labels!
Thanks so much for coming in to chat today Pip!
Remember folks, if you are frequently experiencing any of the common symptoms listed above, go and get it checked out with your GP. They will work through all possible causes (including Coeliac disease), which is the best place to start.
If you are at increased risk of Coeliac disease (use the Coeliac New Zealand online assessment tool, or if you have a close relative with Coeliac disease), don't go eliminating gluten from your diet, as the testing process won't work.
If all the testing and investigation eliminates a disease cause of your gastrointestinal issues (see disease vs syndrome), you may have Irritable Bowel Syndrome. Talk to your GP about a referral to a qualified nutrition professional for some individualised advice.
Australian Correspondence Schools. (2019). Syndromes and diseases. Retrieved May 30, 2019, from https://www.acsedu.co.uk/Info/Recreation-and-Fitness/Health/Syndromes-and-Diseases.aspx
Australian Society of Clinical Immunology and Allergy. (2019). Autoimmune diseases. Retrieved May 29, 2019, from https://www.allergy.org.au/patients/autoimmunity/autoimmune-diseases
Beyond Celiac. (2019). Retrieved May 25, 2019, from https://www.beyondceliac.org
Celiac Disease Foundation. (2019). Diagnosis. Retrieved May 29, 2019, from https://celiac.org/about-celiac-disease/screening-and-diagnosis/diagnosis/
Coeliac New Zealand. (2017). Retrieved May 30, 2019, from https://www.coeliac.org.nz
Health Navigator. (2019). Endoscopy. Retrieved May 29, 2019, from https://www.healthnavigator.org.nz/health-a-z/e/endoscopy/
Monash University. (2019). IBS central. Retrieved may 30, 2019, from https://www.monashfodmap.com/ibs-central/
Science Learning Hub. (2019). Villi in the small intestine. Retrieved May 29, 2019, from https://www.sciencelearn.org.nz/images/2259-villi-in-the-small-intestine