1. Understanding Coeliac Disease:
Introduce yourself, your connection with coeliac disease and/or Coeliac Society.

2. What is Coeliac Disease?
An auto-immune disease that is triggered by gluten
This leads to damage in the gut and in other parts of the body
This damage means nutrients are not absorbed properly and people can have lots of symptoms
Coeliac Disease is an auto-immune disease that is triggered by gluten. It is an abnormal reaction to gluten. The main damage is in the gut and you can see from the picture the damage that it causes. Our gut should have villi – which look like fingers – that dip into food as it goes by and absorb it. When someone with coeliac disease eats gluten, the gluten damages these villi and this makes it much harder for people to absorb the nutrition from their food. Gluten can cause damage in other parts of the body too.

3. What is Gluten? Gluten is a natural protein
Found in wheat, rye, barley and some other grains
Most people have no problem with gluten and do not need to avoid it
Gluten is a natural protein that is found in wheat, rye and barley as well as some other grains. It is a sticky, elastic protein that gives bread its “springy-ness”. Most people have no problem digesting gluten and don’t need to avoid it.

4. Coeliac Disease can have lots of symptoms
Diarrhoea
Bloating
Weight loss
Abdominal pain
Mouth ulcers
Indigestion
Short Stature
Osteoporosis
Anaemia
Reduced Fertility
Migraine
Depression
Not Although the “classic” symptoms of coeliac disease are diarrhoea, abdominal pain and weight loss, only about 50% of people with coeliac disease will have these symptoms. People can have recurrent mouth ulcers, migraine, miscarriage, anaemia and constipation. Lots of children with undiagnosed coeliac disease can be “picky eaters”.everyone gets the same symptoms. Many people have no tummy problems at all.

5. What Coeliac Disease is: What Coeliac Disease Is Not:
An autoimmune disease
Genetic
Runs in families
Lifelong
No cure
Not a choice or a fad
Not to be confused with the fashion for “going gluten free”
Irritable bowel syndrome
Anyone’s fault
There can be a lot of confusion around what coeliac disease is and is not. People often confuse it with the recent fad for going gluten free. So…Coeliac Disease is an autoimmune disease. This means it triggers your body’s immune system and this reaction can cause damage all around the body.
Coeliac Disease is genetic – and this is why it runs in families. It is a lifelong disease – you don’t “grow out of it”. Currently there is no cure – the only treatment is a strict gluten free diet for life.
What coeliac disease is not: coeliac disease is not a choice or a fad. It is not irritable bowel syndrome (although lots of people with coeliac disease are first, incorrectly, diagnosed with irritable bowel syndrome). It is also not anyone’s fault. Nobody did anything to cause coeliac disease – it is genetic.

6. Getting Diagnosed
It can take up to 10 years for some people to be diagnosed…
People think it might be irritable bowel syndrome, indigestion etc.
People don’t have the traditional symptoms of diarrhoea and weight loss
They may not have been eating gluten when they were tested
It can take up to 10 years for some people to be diagnosed. They are often mis-diagnosed with irritable bowel syndrome first. People may also not have any bowel symptoms and may find out they are coeliac due to infertility, nerve pain, recurrent mouth ulcers or early osteoporosis.
People will also have a negative result to a coeliac test if they were not eating gluten when the test was carried out. Always test for coeliac disease BEFORE cutting out gluten.

7. Testing for Coeliac Disease
Blood test to check for antibodies to gluten
If positive, then you need a biopsy with a gastroenterologist
You need both tests to be diagnosed, the blood test alone is not enough.
Remember: You must be eating gluten when you have your tests.
If you are on a gluten free diet, your tests will come back negative even if you are coeliac.
If you avoid gluten, you must eat it again for 6 weeks before your test
It is very important that you are eating gluten when you are tested. If you have cut out gluten, your test will come back negative even if you are coeliac! Never cut out gluten “just to see if you feel better”. Always test first if you think gluten might be a problem. If you have been avoiding gluten you need to eat gluten for 6 weeks before you are tested but talk to your GP first. Children who have a very high result on their blood test may not need to have a biopsy. However, the blood test is not accurate for children under 3 so they will need to see a gastroenterologist for diagnosis.

8. Who Gets Coeliac Disease?
1 in 100 people in Ireland probably have coeliac disease
1 in 10 people with a coeliac first-degree relative also have coeliac disease
More common in people who also have
Underactive thyroid
Type 1 Diabetes
Turners Syndrome
On average, I in every 100 people in Ireland has coeliac disease. However, if you have a family member who is coeliac you, there is a 1 in 10 chance that you are coeliac too. This is why family members need to be tested for coeliac disease even if it seems like they have no symptoms.
Most people with coeliac disease have never been diagnosed. There should be 47,500 people diagnosed with coeliac disease but it seems that only around 12,000 people have been diagnosed. This means we are missing around 35,000 people – and that include around 7,300 children under 14.
Coeliac disease is also more common in people with Type 1 Diabetes, underactive thyroid, Turner’s Syndrome and Downs Syndrome. People with these conditions need to be tested for coeliac disease.

9. Treating Coeliac Disease
The only treatment is a strict, gluten-free diet for life
People diagnosed with coeliac disease must see a CORU Registered Dietitian
Check that they are registered at
A strict gluten free diet is harder than most people realise
It is important to see a CORU Registered Dietitian for advice. Not everyone who runs a nutrition clinic is qualified to give nutrition advice. The best way to be sure is to check that your dietitian is on the national register for dietitians. You can check this at or ask the dietitian when you are making the appointment if they are registered and to give you their registration number.
Don’t try to go-it-alone. A strict gluten free diet is harder to get right than you might think and people with coeliac disease have other nutrient issues that need to checked and monitored. Although it may seem that you can get everything you need online, in our clinics we find that most people are not getting it right unless they have seen a CORU Registered Dietitian.

10. Dietitian Clinic
The Coeliac Society now runs a Dietitian Coeliac Clinic at our offices in Dublin
You can book an appointment by going to and clinic on the “book a dietitian” link.
The Coeliac Society now runs a dedicated Dietitian Clinic for members and non-members with coeliac disease. You can book an appointment on our website or by calling the office. It is €75 for members and €120 for non-members.
We are trialling the clinic in Dublin and, if it is successful, we are hoping to roll out the service to other locations around Ireland.

11. The Gluten Free Diet Gluten is found in:
Wheat, Rye, Barley, Spelt, Kamut, Bulgar Wheat, Semolina, Farina
Foods made with these ingredients include:
Most flour, Bread, Pasta & Noodles, Biscuits, Cakes, Crackers, Breakfast cereals
Beer
Many packaged foods like soups & sauces
Gluten is found in lots of cereals. It is mainly found in wheat, rye and barley but also in spelt (which is a type of wheat), kamut, semolina and bulgar wheat.
People with coeliac disease need to avoid these grains and any foods that are made with them such as bread, most breakfast cereals, crackers, pasta etc.
Lots of packaged foods can have tiny amounts of gluten which is enough to make someone with coeliac disease sick.

12. Oats on a Gluten Free Diet
Oats do not contain gluten BUT:
Most oats are contaminated with gluten
5% of people who are coeliac react to a protein found in oats
Look for certified gluten-free oats
Oats do not naturally have any gluten but they often pick up gluten during harvesting and packaging. This is why someone with coeliac disease needs to look for “gluten free oats”.
About 5% of people with coeliac disease will also react to oats. Speak to your dietitian about oats in your diet. Most people will need to avoid oats until their antibody levels have settled. They can then try them and see how they feel and if their antibody levels stay normal. If they feel unwell or their antibody levels increase, then they will need to avoid oats as well.

13. Gluten as an ingredient
You can find gluten in many packaged foods:
Soups, sauces, dressings
Snack foods like crisps & chocolate
Processed meats – sausages, black and white pudding
Ready Meals
Lots of packaged foods can have gluten as an ingredient or they can pick up gluten from cross-contamination during production or packaging. To help people with coeliac disease to know which foods are safe, the Coeliac Society produces a Food List every year. This list contains foods that are free from gluten both as ingredients and from cross contamination during production. Reading food labels is not always helpful as food manufacturers do not have to list cross contamination with gluten if it happens. Most of them do but not all. This is why the Food List is so important. Make sure you update your food list every year as ingredients and processing can change and a food that is gluten free this year, may not be next year.

14. Gluten Contamination
Foods that are naturally gluten free can be contaminated with gluten during cooking or processing
It is not enough to say “doesn’t contain gluten ingredients”
Legally, a gluten free food has less than 20mg of gluten per kg and has to be lab tested.
Most people with coeliac disease do avoid wheat, rye and barley very well. However, many pick up gluten without knowing it through cross-contamination. Cross contamination is when a food that is gluten free comes into contact with gluten by touching another food. It can also happen if a food is made in a factory that uses wheat flour for another product. A food may have no gluten in the ingredient list but still contain gluten due to cross contamination.
Legally, to say that a food is “gluten-free” it must have less than 20mg of gluten per kg; also known as 20 parts-per-million. Foods that say “gluten-free” on the label are gluten free.
For other foods, do check the food list for foods that are free from gluten as an ingredient and as cross-contamination.

15. Avoiding Gluten Contamination at Home
Have your own butter/spread, jam & marmalade
Have a separate toaster or use toaster bags
Be careful not to mix up utensils when cooking
Clean surfaces well before cooking
Cover the grill pan with foil
Get your own chopping board for bread
Use clean oil in a deep fat fryer (or get your own one)
Store gluten free foods in a separate press and at the top of cupboards and fridges.
Wash any shared utensils with water and washing up liquid before using
These are some of the places where you can accidentally pick up gluten at home.
Keep your own spread/jam etc. in a box/shelf in the fridge to avoid guests using your foods by accident. Store your gluten free foods on the top shelf of a cupboard or, if you have space, in a separate cupboard.
Remember that you need to wash hands and surfaces with soap and detergent before cooking. –water alone is not enough. Gluten is a very sticky protein and you need soap and water to wash it off your hands as well as cooking pots & utensils.

16. Avoiding Gluten Contamination Eating Out
Avoid Deli’s where gluten containing foods are beside gluten free options (e.g. most sandwich shops)
In restaurants, do ask if meals can be gluten free. However, check what kind of response you get before you go ahead…
Contacting restaurants in advance can be helpful
Chain restaurants and hotels are usually good but some small restaurants can be very dedicated – read up before you go
Do ask for recommendations. Many coeliacs can tell you the best places to go.
Eating out is where most people will pick up gluten by accident. One great place to get guidance is your local coeliac support group. They will have experience of restaurants, hotels and cafes in your area and can tell where is best to go.
Calling restaurants ahead can be helpful although not every staff member will know about coeliac disease. It is best to say that you are coeliac and need a gluten-free meal rather than saying you are gluten intolerant. The Coeliac Society is working with Safefood to develop training videos and wall posters for restaurant kitchens to help spread understanding of coeliac disease.

17. Beyond Gluten: Long-term Effects
People with coeliac disease who don’t follow a gluten-free are more likely to develop:
Osteoporosis
Anaemia
Fatigue
Problems with fertility
Ataxia (nerve problems)
People with coeliac disease who do not follow a strict gluten-free diet are more likely to develop osteoporosis, have more fatigue, problems with fertility and nerve damage. Some people have an increased risk of some types of bowel cancer. This is why it is important to follow a strict-gluten free diet for life once you are diagnosed.

18. Common Mistakes… Spelt & sourdugh are suitable… (they’re not)
A little gluten won’t do any harm… (it will)
I don’t feel sick when I eat gluten – maybe the coeliac disease is gone? (It hasn’t)
Cross Contamination
Kissing non-coeliacs…
These are some of the common mistakes people make when it comes to coeliac disease….

19. Coeliac Society of Ireland
We are here to support people diagnosed with coeliac disease and their families
We provide:
Information on gluten-free living
Advice and support
Helpline for members
Compile the Gluten Free Food List every year
A campaigning voice for those diagnosed as coeliac to the government, health professionals, the food and hospitality industry and the general public
Run support meetings and educational sessions
Educate doctors and other health professionals about coeliac disease
The Coeliac Society is here to support people with coeliac disease. We are a small charity working hard to develop the food list for members, as well as working to educate GPs and health professionals about diagnosing and treating coeliac disease. We also lobby the government for funding and support including increasing access to HSE dietitians for our members. We run a helpline for members who can contact us anytime for help and advice. We have just started our dietitian clinic to help increase access to treatment for our members. We are always happy for volunteers to come and work with us – it helps us to see what you as members need and for you to see how we use your membership fees to work for you.

20. Thank You