Sunday, October 30, 2011

Coeliac

This is a blog post I have umm-ed and ahh-ed about writing for quite a while now, and to be honest still feel a little funny about.  It's not my usual craft-based post and certainly not where this blog will be going.  It is one however, that is really important to myself and my family and I'd like to write in case it helps even a single person.  After some encouragement from friends and an (online) conversation with this wonderful woman about coeliac disease and the responsibility of having a voice in the blogworld, here it is.


I'm coeliac (or celiac for the American readers), as is my mum and my little one.  As The Man is wheat/gluten intolerant post-chemo, we are a completely gluten-free household.  Other when buying something new at the supermarket, at home we don't really think about it too much, it's just how we eat.  Often when we go out, we have places that we frequent because we know that we can get "safe" food.  My close friends are all very understanding about our dietary requirements so there is no stress there either.  So for the most part we forget that it can be an issue.

But leaving our little bubble to explore new places to eat or travel, it becomes apparent that not everyone "gets" it.  I think there is sometimes a view that when having to ask questions about ingredients and cooking methods we are being fussy, and this is the bit I feel funny about, wanting to explain why we're not just being picky or difficult.

I've had waiters huff at me and newly met people scoff at my choosing a restaurant based on their gluten free offerings - (even to the point of being told "why would you want to eat there, there is much better (non-gluten-free) pasta places in Melbourne") and on a number of occasions have been served so called gluten-free food which has been contaminated with gluten.

Coeliac disease isn't an allergy.  It may appear a bit like one, but it's actually an autoimmune disease.  Simply put, exposure to gluten causes damage to our small intestine which then leads to a range of symptoms and health problems.  While the intestine is damaged essential nutrients can't be absorbed properly and implications include anemia, higher risk of osteoporosis, infertility and miscarriage, liver disease, depression and an increased risk of certain lymphomas.  In children it can cause lack of development, shortness and behavioural problems.  Not to mention, if you're symptomatic, you feel downright awful.  For me, when I'm exposed to gluten, I have, umm, shall we say, digestive issues, I'm exhausted and get really painful mouth ulcers.  Damage from a single exposure can take a couple of weeks to heal and for symptoms to clear.

Luckily, the treatment is seemingly simple, a strict gluten-free diet.  For most people, what comes to mind is staying away from bread, pasta, cakes, that sort of thing.  But gluten is hidden in so much more.  In the supermarket there are entire aisles that we never even bother going down anymore, with gluten being in almost everything down there.  It's often in sauces, in cereals, chocolates and icecreams, gluten-containing ingredients are often used as thickeners in so many foods and I've even been caught out by drinking a green tea that had gluten in the colouring.  Unless something is clearly labelled "gluten free" a coeliac needs to go through every ingredient on the packet on everything they buy, as it is in so much more than wheat.  I carry a gluten-free ingredients list in my handbag, as well as have an app on my phone to help me decipher what I read.  Coeliacs are also advised not to eat anything with the claim "may contain traces of gluten".  That "trace" is enough to make us sick.

For the little one, we also have to consider gluten in things that she plays with.  I make gluten-free play dough for her and ensure that any paints or glues that she uses are also safe.  Even though she's not going to eat (well hopefully she won't...) the glue or paint, while she's creating, things get on her hands, her hands touch her mouth.... we've had some slip ups and she's ended up sick and with night terrors for a week, just because of a little paint.

When eating out, for a coeliac, it's not just the ingredients that needs to be questioned, but also the food preparation and cooking methods.  You see, if you have coeliac disease, it only takes about the equivalent of a crumb of gluten to cause damage.  If the gluten free food has been prepared on the same board / cut with the same knife / cooked in the same pan / toasted in the same toaster / cooked in the same oil / served with the same tongs as a gluten containing food, gluten contamination can occur and make us sick.  Potato chips/fries that are cooked in the same oil as any (non-gluten-free) crumbed food are not gluten free.

Being an autoimmune condition, the story for many coeliacs doesn't end there.  Autoimmune conditions like to hang out together so if you have one, it's quite common to have another or a few.  For me, it's a thyroid condition that I'm required to take a little tablet everyday for the rest of my life.  Just a little tablet, but.... if I'm exposed to gluten, the damage to my gut means that I don't absorb my medication properly so within a day or so I'm hit with a double dose of fatigue, pins and needles in my hands, feet and face, painful arthritis and my hair starts to fall out.  On top of all that lot of us are also hit with some, or a whole gamut of food allergies or intolerances.

There are some people that are intolerant to gluten or choose to avoid it as a lifestyle choice who don't have to be so strict about the food.  But please, next time someone around you asks about gluten in food, spare a thought, they may be coeliac and be asking for a serious reason.

............

Some extra stuff...

A word of advice, one from my own experience, if you suspect you're coeliac, you must be eating gluten before testing.  If you're blood test is negative yet you're symptomatic (which can be as simple as having problems with low iron level), it's advisable to get an endoscopy to rule out coeliac disease or at least see a good gastroenterologist.  The blood test is not 100% accurate and it will also only detect 90% of coeliacs.  Very long story short, for this reason, I went undiagnosed for 27 years despite repeated blood tests.

This is a really useful site for information.

This is the app I use for checking gluten free ingredients in food.

I like this app for finding restaurants that serve gluten free food when I'm travelling.

10 comments:

willywagtail said...

Thankyou for sharing your families experience. I have a friend whose little 3 year old has been diagnosed as being on the cusp of becoming a coeliac. I have sent the link to her. It seems that the little boy already realises the benefits of staying away from gluten. Cherrie

Laura Wilson said...

Melanie, thank you for such an informative post. I have to admit, coeliac disease is not something I knew much about. It seems that other people's misunderstanding of the disease is one of the greatest challenges, so thank you for sharing your experience. xx

Bel said...

Thanks so much for sharing Mel, your post was a really great read. We have a little boy coming to a party in a few weeks and I will now be much more aware what I serve him, in my ignorance I never even considered the repercussions etc, I just thought my making some 'wheat free' party food I was being a good host,

74 Lime Lane said...

Brilliant post Melanie. Not directly affected in any way but I learned a lot. You've shared some really valuable information here.

Hot Fudge said...

Mel, thank you for your story - I am sure it will help those of us who have no idea how difficult life can be as a coeliac. I do know a couple of people with the condition, but never realised the full extent of all it entails.

Our little granddaughter here in Sydney is allergic to all dairy products and also ocean fish. Any time she is in our care we have an EpiPen nearby in case she has a severe reaction. The likelihood is rare, but it's quite confronting.

So I know how you are feeling to have your little one also a coeliac It's hard when they are so young, but I am amazed at how resilient they are and what courage they show.

Let's hope your post spreads the word so that people can be more understanding.

ChingyPingy said...

This is a wonderful post Melanie. I know people who are coeliac and many more people who have some level of intolerance to gluten.

Your post really highlights the need for people to take requests for gluten free food seriously.

I am discovering a level of intolerance for gluten in myself - so very grateful for the gluten free resources - I really do seem to feel a lot healthier when I avoid it!

leah of sang the bird said...

Thanks for sharing your experience. I hope that the information that you are sharing will stop the eye-rolling of people who think you are just being difficult. I have an anaphalactic allergy to chocolate... some people think I'm being difficult too.
xxx

Sarah said...

I know what it is like to have waiters sniff at you - they always think I'm being an obstinate picky eater and don't believe me when I say I am allergic to tomatoes.

Thank you for sharing your story. I am sure it is helping to share awareness. To start with, I didn't realize it wasn't a food allergy and that ingesting gluten could have a much more severe affect on you than a bit of tomato sauce could on me!

Naturally Carol said...

My dad has been lactose intolerant for a long time and has the same problem with resaurants frying things in butter and then claiming that they're dairy free..what the? The community always needs more education concerning various food allergies, intolerances and diseases. Thank you for sharing.

Thea said...

Thanks for explaining it Mel. I'm sure this post will serve as a good reference to those who suspect they may have a problem. take care. x

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