It’s Coeliac Awareness Week this week (9th-15th May 2016) and so I thought the best thing I could do to help raise awareness was to compile a simple guide to the disease, to help give people all of the information I can from one place. If you are looking for a guide to starting a gluten free diet, see my post from last year here for advice.
This post is the padded out and edited version of this Tumblr post that I made last year for awareness week. I was astounded by the amount of reblogs and messages of support that I received from people who had experiences with the disease, or just wanted to help.
Alas, Tumblr is not the best medium for creating a serious post with all of the relevant information (as you can see I created it on my fan page for Red Dwarf – not exactly the ideal place for a post about an auto-immune disease!) and so I have decided to extend it here.
All information I have used from other websites has been sourced and linked and is given in quotation marks. Any parts not sourced are from my own knowledge of the disease or my own experiences.
Coeliac Disease – the facts
(Source: Coeliac UK Website)
“What is coeliac disease?
Coeliac disease (pronounced see-liac and spelled celiac in other countries) is a lifelong autoimmune disease. It is caused by the immune system reacting to gluten.
How common is coeliac disease?
Coeliac disease is common and affects one in 100 people. However only 24% who have the condition have been diagnosed which means there are currently nearly half a million people who have coeliac disease but don’t yet know. If a first degree family member (such as mother, father, sister or brother) has the condition then the chances of having it increase to one in 10.
What causes coeliac disease?
Coeliac disease is caused by a reaction of the immune system to gluten – a protein found in wheat, barley and rye. When someone with coeliac disease eats gluten, their immune system reacts by damaging the lining of the small intestine.
What are the symptoms of coeliac disease?
Symptoms range from mild to severe, and can include bloating, diarrhoea, nausea, wind, constipation, tiredness, mouth ulcers, sudden or unexpected weight loss (but not in all cases), hair loss and anaemia.
What is the treatment for coeliac disease?
Once diagnosed, the only treatment for coeliac disease is a gluten-free diet. Gluten is found in wheat, barley and rye. Some people are also sensitive to oats. Once gluten is removed from the diet, you should start to feel much better.”
(The following information is from the NHS website):
Complications of coeliac disease only tend to affect people who continue to eat gluten or who have yet to be diagnosed with the condition, which can be a common problem in milder cases.
Potential long-term complications include:
Less common and more serious complications include those affecting pregnancy, such as having a low-birth weight baby, and some types of cancers, such as bowel cancer.”
Coeliac disease can affect anyone. Some Coeliacs do not have symptoms (known in the community as “silent coeliacs”), or have very mild symptoms and only find out about the condition due to family members being diagnosed. Symptoms can often be confused with other conditions – see Coeliacs UK’s page about symptoms here for more information on this.
The only way to stop the effects of Coeliac Disease is to go onto a gluten free diet. This essentially means that those of us living with the disease have to cut out foods such as pasta, bread, pizza, cakes, some breakfast cereals, ready made foods and do a lot of research before eating out. Gluten is hidden in lots of foods that you wouldn’t even know about – soy sauce, mustard, cous cous, some sweets, some chocolate, even chips sometimes have a wheat coating!
To top it off, even a single gluten-containing breadcrumb/flour/bit of food falling into our food by accident can make us ill. This is called cross contamination of gluten, and is a great fear for Coeliacs and those with other gluten related illnesses, so special preparation areas are often needed, at home and in eateries.
As you can see living gluten free is far from easy. Gluten free alternatives are becoming more and more available all the time but we need the help of non-coeliacs.
The more people who are aware, the more companies will cater for us, so please share this, share it with friends and family, on other sites, print it out and stick it up somewhere, and not only could you be helping to diagnose someone, you could be making a difficult illness slightly easier to live with.
It is also important to know that some people can have gluten intolerance, or sensitivities. This means their illness is not auto-immune like Coeliac disease but often has similar symptoms. People with these illnesses may not have to remove gluten all together as they may be able to tolerate small amounts without damaging the gut. Gluten intolerance is still a difficult condition to live with, and in a lot of cases it is not taken seriously because it is confused with the fad diet – some people use gluten free as a way to try to lose weight (p.s this has not been proven, and often doesn’t work, this video from Unnatural Vegan on youtube gives a lot of information about this). Gluten intolerance is often diagnosed in a similar way to Coeliac disease, except that endoscopy results for CD will be negative. Many with gluten intolerance live the same lifestyle as someone with CD, removing gluten completely, and cross contamination can lead to “glutening” for them too.
If you have any of the above symptoms please go to your doctor. If you would like to donate to Coeliac UK please do so here. If you have questions about the illness feel free to e-mail me (email@example.com), but I would recommend going to Coeliac UK or the NHS website for more details, as I can only use my own experience, I’m not a doctor. Coeliac UK also have Twitter and Facebook if you would prefer informal advice.