Coeliac UK, a charity that supports people with coeliac disease, stress the importance of continuing to eat gluten until you have a diagnosis, they also highlight some of the dangers of self-diagnosis.
I did not self diagnosis. Just before Christmas I was told by my GP to start a Low FODMAP diet - a highly restrictive diet aimed a treating chronic IBS, one of the (many) things you remove from your diet being wheat and all wheat based products.
The Low FODMAP diet worked wonders for me - my symptoms either faded or reduced considerably. It is not, however, a diet that you are supposed to maintain forever. Instead, after a 2 month detox you gradually re-introduce different foods and record how much of them your body can manage. Six months later I had managed to reintroduce all foods into my diet (expect Beetroot - oddly) and only had wheat to go.
A bowl of weetabix and a couple of digestives later and the pain began to flood back...and here I am. My doctor wants to re-test for coeliac disease (despite a negative blood test before Christmas) and has put me on a gluten challenge for three weeks.
My symptoms include: stomach cramps, chronic fatigue, a cold foggy feeling in my head, pain in legs, arms and joints and even my anxiety as started to raise it's ugly little head again. I'm unable to work, which is making me miserable, and feel like I have been given very little support with managing the symptoms.
Coeliac UK describes doing a gluten challenge as being "difficult and uncomfortable" (ahem) but gives no real advice on how to manage the symptoms. Instead, I have turned to the online community for support and advice. I have collated all my finds together and have put them here in the hope that they might help somebody who is going through the same struggle...
Distance: Don't distance yourself from family and friends. This can be a really difficult experience so surround yourself with supportive and caring people, talk to them and let them help you.
Diet: When doing a food challenge it is easy to focus solely on that one food - I did this for the first 3 days and it made me feel terrible. It's important to maintain a vitamin-heavy diet with lots of fresh fruit, vegetables and (for meat eaters) meat.
Do something: When your whole body aches it is easy to set up camp on the sofa and refuse to leave the house. After three days I was advised by a lovely Instagram follower that she found light exercise helped with the pain in her legs. I have committed to taking my dog for a short walk each day and it really is making a difference both physically and mentally.
Direction: Set yourself a different challenge. Especially those of you that are off work due to the symptoms. You need something to give your days some meaning so that your hours aren't consumed by the pain. Personally, I'm doing some work for my new job that I start in September. I only manage a small amount each day but it means I am thinking ahead and remaining positive. You might decide to plan a weekend away for when you're feeling better, you might attempt to read a series of books or you simply might attempt to binge on Netflix (OITNB anyone?). Whatever it is giving yourself small challenges will help keep you focused and positive.
Devour: Finally, the best bit. This, despite being one of he most painful periods of my life, may be the last time I can ever eat gluten. In an effort to boost my spirits I made a list of gluten containing foods that I will eat one last time before my blood test: digestives biscuits, Krispy Kreme doughnuts, Cornish pasty, a Steak and Ale pie...the list goes on.
**An update**
Having drafted this post earlier I feel I must amend it before posting. Gluten, it seems, has beaten me. After only five full days eating gluten my body and mind can take no more. Last night, my symptoms were so severe that they scared me - this cannot be the right thing for my body.
This is not to suggest I am anti-gluten challenge / coeliac diagnosis, if I could, I would continue with this and get my answers. But for now, it is simply too much. This is a personal choice, after much deliberation, and I would not want it to have an effect on anybody else.
I am seeing my doctor tomorrow to update him on my symptoms and my decision. I'm hoping he will be supportive as I simply cannot put my body through anymore pain.
On a brighter note, I have certainly learned something from my experience: I now know that a gluten-free diet is the right choice for me. I am committed to ensuring my diet is balanced and healthy. And I will never again stare longingly at a slice of Victoria Sponge!!
Thank you so much to everyone who has offered support either through email / Instagram / Twitter - I'm looking forward to sharing my next steps into Gluten Free living with you.
