My journey with gluten, and being non-coeliac gluten intolerant
Today I would like to share with you part of my health journey. I have always tended to have digestive issues. As a child I tended to constipation for no apparent reason, despite a good diet and plenty of fresh vegetables. In my late teens I started getting bloated. The bloating could be quite painful. I could not work out the trigger for it. I could eat a particular food one day and be fine, and then eat it another day, and blow up like a hot air balloon. During my mid-twenties I stopped eating wheat at home, but ate it in moderation if I was out. That seemed to help, but the problem continued.
While working in London as an accountant in my early 30’s, I sought out the help of a natural therapist, to no avail. I followed a very strict eating plan for 2 months, and while I felt good and slept really well on my no sugar (and I can’t even remember what else now) eating plan, the bloat still persisted. I tried homeopathy too, and a couple of other practitioners. The bloat remained.
Imagine my frustration when I became a naturopath, and still could not fix myself! I achieved definite improvements, but was still bloated by the end of the day to some degree. And the painful episodes were less frequent but still occurred. Always in the fringes of my thoughts, was the fact that I had never tried going gluten-free. And I have to confess, that even as a naturopath, I was avoiding this as it seemed overwhelming and difficult…and after all, I was not eating that much gluten!
And then, one day, a couple of years ago, I was wasting time on facebook! Up popped this image of two hands that looked remarkably like mine. If I place my hands next to each other like an open book, with the pinky fingers alongside each other, my pinky fingers are really short, and a little crooked too. My Mom is the same. Grandma was too. In fact it was one of the first things I looked at when my daughter was born - did she have the family fingers?! As an aside, she did not, but as she grows, it seems her pinky fingers are not keeping pace, and she will be the same. Anyhow, back to the picture. It was attached to some article by a gastroenterologist written in the 1950’s, and he had called this short-pinky thing “Braly’s sign”. According to Dr Braly, in his experience, people with this sign were far more likely to be gluten intolerant. And while not all people with this sign were gluten intolerant, and not all people who were gluten intolerant had this sign, he felt there was a correlation. I have mentioned this to doctors and a gastroenterologist since, and got very strange looks! So clearly it has not become a popular diagnostic sign. However, it was the catalyst for me to try going gluten free. I can still remember it was a Sunday evening, and the 30th November, and what better day to start something new, than a Monday, and the 1st of the month too?
So that Monday, 1st December I went gluten free. And I was amazed. By day 5 I was no longer bloated. At all. In fact, I realised that while I had believed I was bloated by the end of each day, in fact I was mildly bloated all the time. It had become my normal, and I only realised this when I was no longer bloated at all. Even more amazing was my mood. I had never felt I had a problem with mood, but my mood was so much better. I felt lighter and was clear-headed. Any hint of constipation was gone. I wished someone had suggested it, or I had thought to try it years before.
A few months later I went to a doctor for a routine check-up. I mentioned that I had stopped eating gluten and felt so much better. She suggested that I should be tested for coeliac disease. As I had not eaten gluten for a few months, the standard blood test would not be useful. As a starting point she tested for the coeliac gene. I tested positive, so it was recommended I then do a gluten challenge and then have an endoscopy, which is the only way to get a proper diagnosis for coeliac disease. My heart sank. The challenge involved eating 4 slices of bread a day for 6 weeks.
To know for myself, and for my daughter, I went ahead and did it. I ate 4 slices of wholemeal bread daily for 6 weeks. Friends asked me if it was nice to be able to eat what I wanted. No! It was not! And to be honest, other than having a sneaky pizza, it was not what I wanted. For the first 3 days I felt really nauseous. It felt like constant morning sickness. Thankfully that passed. By the end of 6 weeks, I was bloated, constipated, and my whole digestive system was unhappy. I felt sluggish and “blobby” and had gained some weight. The worst part was my mood. I felt depressed, lacked motivation, and was seriously grumpy. The world became grey and lacked joy. My family and I could not wait for the 6 weeks to be over. I was delighted to be knocked out by the anaesthetist for the endoscopy, knowing the bread challenge was over.
I do not have coeliac disease, for which I am grateful. However, I do know that gluten makes me feel terrible, and that it definitely has no place in my life! It took me a while to get street-smart and know all the places gluten is hidden. Occasionally I get “glutened”. Normally in tiny amounts. I always know it has happened. I get a very vague feeling in my head, I feel withdrawn, a bit grumpy and of course, bloated. Do I miss certain foods? Occasionally. Do I miss feeling like that? Never! Eating out can be tricky, and of course telling people who have kindly invited you for a meal never gets easier. I always feel bad that I am the problem-guest. But my life is so much better gluten-free.
WHAT CAN YOU LEARN FROM MY STORY?
Not everyone had a problem with gluten, but it is certainly worth exploring if you have persistent unexplained symptoms, be they digestive or not. I would also always recommend cutting gluten out if you have any inflammatory or autoimmune condition. PLEASE ALWAYS GET TESTED FOR COELIAC DISEASE BY YOUR DOCTOR BEFORE CUTTING GLUTEN OUT OF YOUR DIET. It is so much harder to eat it again when you have stopped it if you do have a problem with it.
If you think you may have a gluten intolerance, or need help with creating a gluten free lifestyle that does not include the many highly processed gluten-free options available in the health food aisle of the grocery store, then please book an appointment.