It’s funny how they say you crave what’s bad for you. When I was six, my family moved to spain. I brokered a deal; if one of my comfort foods, Nestlé Shreddies (malt and wheat!) were shipped over monthly I’d move happily.
My parents agreed, but although they didn’t know it, they were poisoning me!
I was always pale and very thin, but this was a genetic quirk we were used to. Nothing a few pies couldn’t sort out, we thought.
I had many childhood skin allergies, sometimes waking up covered in weals. I looked like I had been whipped. When we would visit the doctor he would advise that we change washing powder, use cotton sheets, or hint that perhaps I was inheriting my mother’s psoriasis.
Teenage years seemed to accelerate symptoms. I started having fainting episodes from around nine which became more regular with the onset of puberty. Again these were explained away as ‘phases of the moon’ even though I had severe anaemia. I had become a vegetarian at this stage which was considered a factor in this.
At around this age a symmetrical patterned rash started to appear, around my face, elbows and knees.
Strangely some years travelling abroad seemed to alleviate these symptoms. In hindsight, this could have been due a much smaller amount of glutenA protein that is found in the cereals wheat, barley and rye.
in my diet. I lived in hotter climates, ate more salad and stayed in Asian countries where the diet tended to be rice based.
Pregnancy seemed to be the final trigger. Whether this was my hormones or the coeliac diseaseA condition where a person is unable to eat gluten as it makes their body attack itself.
and dermatitis herpetiformisUsually shortened to DH, this is a form of coeliac disease where the skin is affected with small blisters. reaching its peak, the symmetrical rashes would appear larger and for longer periods. I was fainting regularly and eventually had to have two months absolute rest with a low lying placenta.
My health deteriorated rapidly after this. I had more fainting fits with loss of bowel control, as well as neurological symptoms. As a guitar player one of my greatest fears was that the numbness and tingling in my fingers and hands would get worse. My overactive imagination led me to research every related condition!
Again I visited countless doctors, neurologists and skin specialists. I had MRI scans and CAT scans, which are both very expensive tests for the NHSNational Health Service. There were suggestions that I was anorexic or depressed, despite the fact that I eat plenty. I was even advised to cease my vegetarian diet. I was certainly becoming depressed from lack of diagnosis and began to suffer from anxiety; normally that I would pass out whilst looking after a small child!
The following year I was hospitalised with a kidney stone and suffered agonising stomach cramps. I spent countless hours on dermatology websites scouring pictures of rashes. Now there are not many skin complaints that I don’t know about!
Luckily for me a close friend had given up her career in broadcasting to pursue training in nutrition. After reading an article on rashes I asked if she knew about Dermatitis Herpetiformis. She immediately looked up and said yes, that would correspond with the lack of calcium absorption on my blood testBlood is taken from someone who is being tested for coeliac disease.
results. It was a eureka moment!
Following this I visited a private dermatologistA doctor who specialises in skin conditions.
armed with my folder of photos and blood work and barely let him get a word in edgeways. He took skin samples and eventually confirmed Dermatitis Herpetiformis.
That day I stopped eating gluten. I had always cooked from scratch and tended to eat wholefoods, so I was familiar with the alternative products available.
Within one week I felt more alert than I had in years. My skin and facial spots, which had lasted into my 30’s, disappeared. Third party issues like gum disease and teeth problems also eased, and my toilet habits altered into a lovely firm rhythm.
I could not believe that this had not been diagnosed before, considering the expense incurred by the NHS and to me.
It seemed so easy; until I resumed my social life! Nine out of ten times I ate out I would get ‘glutened’. People assume I am a faddy eater and they don't understand that coeliac disease is a proper medical condition. Supermarkets are increasingly catering for the needs of people with coeliac disease, so eating out is still the final frontier for us!
Finally I am now seeing patterns emerge in family members. I am urging my mother to get tested, as she has suffered lifelong with psoriasis. There are even symptoms of the condition as far back as my late grandfather.
Even with the struggle that I had to go through to get diagnosed, I never regret it, because I am now so happy to be in control.
With thanks to HELLO! magazine for allowing us to use the images above.