I, along with many other gluten free bloggers, are gluten free because we have coeliac disease. This week (13-19 May) is Coeliac UK’s Awareness Week which this year is focused on ‘gut feeling’ and helping people get diagnosed. It’s estimated that around 500,000 people in the UK have coeliac disease but are currently undiagnosed.
What is coeliac disease?
For those who don’t know, here’s some basic information about coeliac disease, taken from the Coeliac UK website:
Coeliac disease (pronounced see-liac, spelt celiac disease in other countries) is an autoimmune disease. Gluten, which is found in wheat, barley and rye triggers an immune reaction in people with coeliac disease. This means that eating gluten damages the lining of the small intestine. Other parts of the body may be affected.
What are the symptoms of coeliac disease?
Coeliac disease is an unusual disease in that the symptoms are different in different people, which makes it very tricky to diagnose. Some don’t experience any noticeable symptoms at all, only showing internal damage. Many coeliacs are diagnosed with IBS initially, which seems to be a catch all for most digestive problems which appear to have no other cause. Some of the typical symptoms can include:
- diarrhoea, excessive wind, and/or constipation
- persistent or unexplained gastrointestinal symptoms, such as nausea and vomiting
- recurrent stomach pain, cramping or bloating
- any combination of iron, vitamin B12 or folic acid deficiency
- tiredness and/or headaches
- weight loss (but not in all cases)
- mouth ulcers
- hair loss (alopecia)
- skin rash (dermatitis herpetiformis (DH))
- tooth enamel problems
- repeated miscarriages
- joint and/or bone pain
- neurological (nerve) problems such as ataxia (poor muscle co-ordination) and neuropathy (numbness and tingling in the hands and feet).
(List from Coeliac UK website)
Treatment for coeliac disease
The only treatment for coeliac disease is to follow a gluten free diet. In the UK, those with coeliac disease can get some gluten free essentials on prescription – I pay by direct debit and get bread, flour, crackers and pasta. As you’re probably aware, many supermarkets have a free from range now, though quality varies. I’ve found most of the bread to be very disappointing compared to that I get on prescription, but the biscuits and crackers are usually nice. Eating out can be tricky but it’s getting much easier, with many brands and independents catering for a gluten free diet. The big problem is cross contamination – the food itself may not contain gluten, but if it’s cooked with things that do then it could have traces of gluten.
Over the awareness week, a number of gluten free bloggers are sharing their story so I thought I’d share mine…
I can’t really put my finger on when I knew something was wrong but I think it was during my late teens. As a child, I ate ‘normally’ – well, I was very fussy as a young child and lived on crackers, cheese and crisps! I don’t remember having many problems when eating gluten back then, though I was a gymnast and did suffer bloating and stomach ache at times but usually put that down to not eating enough (training 4 times a week straight after school made it difficult to get enough energy to exercise, and I often had a small lunch), or down to nerves (I used to always feel ill around competition time).
At University, I continued with my gymnastics though less intensively and only twice a week, and ate a lot of rice and pasta meals. Oh, and lemon meringue pie. But I was out one evening and passed out. I remember being really annoyed as when I came to in the medical room of the bar everyone presumed I had drunk too much, but I’d not been drinking that night. From then on, I tried to ensure I ate enough (I have a terrible habit for forgetting to eat), but suspected I was perhaps anaemic. My weight stayed pretty stable so I wasn’t too concerned and fortunately only fainted a few times before I seemed OK again.
Gymnastics team at Bangor University (I’m the one holding the trophy)
Fast forward a few years and I was working as a subject librarian in a university. I began to get cramps on a fairly regular basis but assumed it was hormonal. I had been taking the contraceptive pill, so stopped taking that to see if it made a difference. It didn’t. I was frequently constipated, so much that it became a bit of a joke between my partner and I, and the cramps became worse. I loved the teaching element of my job, but there were some days when I just wanted to curl up in a ball and standing was really difficult. Fortunately, it never got to the stage where I had to take time off work (I’ve never had a day off work in almost 8 years of work, touch wood that remains). Some days though, it was so painful that I’d just get home and cry and go to bed. Nothing seemed to help – I tried sitting, standing, curling in a ball, various different tablets, period pain patches, hot water bottles. You name it, I tried it.
Around this time, we went on holiday to Orlando. We visited the Disney and Universal parks and I stuffed myself with typical American food; pizza, cheeseburgers, hot dogs, fried food, pancakes, waffles etc. I felt ill for a lot of the holiday (unsurprising given what I know now!) but thought it must be the rides making me feel sick.
I doubt this pizza did me any good!
Eventually, my partner encouraged me to go to the doctor when it clearly wasn’t getting any better. I was very fortunate that the doctor organised blood tests to test for everything. I had 7 different blood tests, 6 of which came back negative. There was one outstanding one, the test for coeliac disease, but the doctor felt sure it wasn’t that so I was diagnosed with IBS and given tablets to help. The tablets did seem to help, but a couple of weeks later the other blood test came back positive. I went back to see the doctor and was referred to the hospital for an endoscopy. At this point, I researched coeliac disease and was totally overwhelmed by how difficult a gluten free diet seemed. I was told to continue eating as normal until after the test to prevent a false negative.
I’m not going to sugar coat it – the endoscopy was not nice. I was asked if I wanted an anesthetic throat spray and sedative to help, which I said I did want. If you’re going to shove a tube down my throat I want everything I can get to help it seem less painful! I was told I’d be very woozy afterwards and may feel a bit like I was drunk. I didn’t. I don’t know why but I guess we’re all different and it just didn’t seem to have any effect on me. I was totally alert throughout the procedure, which felt really uncomfortable. It didn’t hurt so much, just felt very strange. I was moved to recovery and told to stay lying down for an hour, but I felt absolutely fine. My partner came to collect me and was expecting me to be acting strange but I was my normal self (he was disappointed as he was trying to play tricks on me!).
After the endoscopy I was told I could move to a gluten free diet, which I did. I found it hard at first, mainly due to unclear labelling and just not knowing where gluten might be hiding (answer: anywhere, check everything!). My family and friends found it hard too, and Christmas that year was hard because most of the food we normally had wasn’t gluten free. They were very good though and tried to adapt things.
On December 31st 2009, I received confirmation that I had coeliac disease. I had such mixed feelings about it. Part of me felt so relieved that I know knew what was wrong and could take steps to get better, but part of me felt really down about the fact that I had a lifelong disease that meant eating would never be simple again. Oh, and the nerdy numbers part of me loved the fact that I’d been diagnosed on the last day of the decade so I could start the new decade in the knowledge that following a gluten free diet should mean I can stay well.
Contrary to what some people believe, to prevent the effects of coeliac disease you do have to cut out all gluten from your diet (yes, even that little bit that might be on the gluten free cake if it’s next to a cake with gluten in). You also have to do it for the rest of your life (unless a cure is developed in the future). It’s not possible to slowly introduce gluten back into your diet without feeling the ill effects. For me, if I accidentally eat gluten I’ll feel the effects in a few hours and will be ill (cramps, bloating, constipation, diarrhoea) for usually around 3-4 days. What concerns me more however is the internal damage. If a coeliac eats gluten, the body continues to attack it and the villi in the intestine will flatten. This means you’re not going to be taking in nutrients and can therefore lead to all sorts of other issues. There’s also links to some cancers, and infertility (this one terrifies me!). But it’s not all bad, you can still have some yummy food!
Examples of gluten free food
Things can only get better
Since my diagnosis, things have already improved so much. Labelling is getting clearer (there are a number of laws around labelling of gluten free food), knowledge is improving, and I’ve been so impressed with the eating out options now available (and more are coming on board all the time!). Coeliac UK continue to drive forward new developments too – they are soon launching a mobile app to enable access to the food and drink directory which lets you know if something is gluten free. You’ll be able to scan the barcode of the product whilst in the supermarket, and find out if it is suitable (if it’s in the directory). I can’t wait until this is available as its something I’ve been requesting for a long time.
I think I may have coeliac disease…
If you think you may have coeliac disease, please see your doctor and mention your concerns. Knowledge within the medical profession seems to vary (I was lucky that I was tested for coeliac even though my doctor didn’t think it would come back positive), but you can specifically ask for a blood test for coeliac disease. There’s loads of useful information on the Coeliac UK website, but please don’t feel like you have to go through this on your own. I’ve been there, and I know it’s not always easy, so please feel free to contact me if you want to talk about it. I admit there are days when I just want to be able to eat like a ‘normal’ person, but coeliac disease is part of who I am so it’s something I’m happy to talk about and help others with. Please feel free to leave a comment on this post, email me, or send me a tweet (I’m @joeyanne) if you want to talk about it.
Please help spread the word about coeliac disease by sharing a link to this blog post, or to the information available on the Coeliac UK website.