Great to be able to bring you some more diagnosis stories on Gluten Free by the Sea today, the first is from Becca Fetterman. It is yet another astonishing story and it’s very interesting to have the perspective from childhood too. The more I read the more convinced I am that Gut Feeling week is as much about making the medical profession more aware of coeliac disease as it the public. Over to Becca:
My Coeliac Journey
Hard to know where to start. When my mum weaned me she started giving me Weetabix pretty early on. I got so sick I was hospitalised, I was in hospital for weeks with my mum fairly convinced I would die. By some fortune my consultant went on holiday and the new consultant tested for coeliac and as a baby I was diagnosed, if only that was the end of the story.
Being young and coeliac was tough, my parents friends all had a Becca shelf in their kitchen but I was aware of all the stuff I couldn’t eat, especially at birthday parties. My mum always used to make me a big cake for my birthday and freeze pieces to take to parties. I remember one year at my birthday I was so upset about not being able to eat the yummy treats so I ate one. I ended up throwing up all over the lucky Care Bear I got for my birthday!
My dad never really understood what I could and couldn’t eat. If I ever left my pack lunch at home the school would call him and he would buy the only thing he knew I could eat 1kg bar of dairy milk (no longer gf), ironically I used to swap some for fruit.
I had annual tests to check I was doing ok and was ‘still coeliac’. I was always very under weight. At 6 I was given an endoscopy, horrible at any age, at 6 I had a panic attack. At 9 my bloods were clear so they said I needed another endoscopy, my mum refused and the consultant suggested trying gluten and seeing what happened.
I ate gluten for 20 years thinking I had grown out of CD. During this time I went to bed at 9 nearly every night and it took me a week to get over a night out. I was constantly ill with infections but my tummy was fine. When my mum was waking me up by ringing in the evenings at uni she insisted I went to the doctor and told them about the ceoliac history. The Dr said I was anaemic and lacking folic acid probably a left over from being coeliac as a child and put me on supplements. I never really got better.
In 2007 my boss told me she thought I had glandular fever as I had been ill for so long and that I wasn’t allowed back to work until I had a blood test. I went to my GP who read my history said it was nonsense and sent me straight for a coeliac test. I spent the 6 weeks before my endoscopy eating every yummy treat I could think of. I had never really eaten bread or beer as they made me bloated but it never stopped me with cakes!
After I was diagnosed I tried to cut out all gluten. I became super sensitive and got really ill from little accidents. I still test positive at every blood test so must be on the most sensitive side of the coeliac scale but I now just feel a little uncomfortable from an accident.
I feel very lucky that I was re diagnosed just before trying for children. My levels in my blood were so low I would have probably had big problems. I am now completely paranoid about my daughters having it despite testing negative but they eat very little gluten. Having had children soon after diagnosis I am still very tired, but my immune system has clearly recovered as I get ill so much less than before. My husband has been amazing learning to cook GF and making yummy food for me. The best thing he does is the being difficult when at restaurants and friends houses, interrogating on my behalf as this is the bit I dread.
Whilst I was eating gluten my sister who had always had severe asthma and eczema and chronic infections decided to cut gluten out. They all disappeared, can’t believe no one ever thought to test her. After I was re diagnosed I told her to go to a specialist so she can get bone scans etc. she tried to get diagnosed but got so ill she gave up.
On re-diagnosis I found the groups on Facebook so useful and supportive and recently I have loved connecting with coeliacs on Twitter.
Becca – @beccafetts
Gluten Free By The Sea 
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