“WHAT ACTUALLY APPEARS TO BE DARK AND SCARY MIGHT ACTUALLY BE FULL OF LIGHT”
At the start of 2013, I was a married 37 year old Mum of two small children of 1 and 4 years old. I started to get bad headaches that initially I dismissed as migraines.
Over a period of days they became severe and I began to get electric shock like tingling in my toes and hands and my vision became blurred. I was quickly diagnosed with optic neuritis and referred to a neurologist.
11 years before I had seen a neurologist after episodes of suddenly losing any function in my legs. I literally hit the deck on a London route master bus on one occasion. At the time the neurologist put it down to work related stress.
Back in 2013, after losing total vision in my right eye my optic neuritis had a text book progression and I regained my sight after 6 weeks.
Far scarier was the state of my general health. The tingling turned into painful spasms that I was unable to control my arms and legs. I was exhausted and had no energy. I’d suddenly lose my grip and drop things. I went to get out of bed one day and couldn’t. My feet and legs simply wouldn’t move.
I had a long list of weird and not very wonderful symptoms but the most devastating thing was I was unable to look after my children. I had given up a successful career to be a stay at home Mum.
In among the chaos a wonderful person, I still refer to as super nanny, who told me how I could be assessed for child care funding. A true blessing which I was incredibly grateful to receive over the following months that I needed help.
MRI SCANS, DOCTORS, PAIN AND DRUGS
I had brain and full spinal MRIs and no lesions were found. Evoked Potential tests however showed nerve damage in both eyes , legs and arms. I was scared.
I was offered a lumbar puncture but my GP pointed out it wouldn’t change anything and that I was experiencing was an episode of MS but without evidence of scaring on the MRI scans it was not a diagnosis of multiple sclerosis. He suggested that perhaps it was best to see what happened in time and not chase a diagnosis. Advice I am eternally grateful for.
I was prescribed a drug for my symptoms, but it wasn’t for me, as it numbed out ALL feeling of anything.
MY MUM AND GRANNY
I am very familiar with neurological disease.
My Mum had Motor Neurone Disease (ALS) and died within 2 years of diagnosis. She was 52.
Her mother (my maternal Grandmother) lived with progressive Multiple Sclerosis from her 30’s until her death in her 80’s but required full time care living in a nursing home.
My granny had tried to live gluten-free, back in the 1970’s and was perhaps Coeliac but unfortunately I have no way of finding out.
HELP AND SCIENCE
I started to look for answers . I found a TED talk by Dr Terry Whals, (see Heal: Dr Terry Whals here).
I read about the blood brain barrier, symptoms of Coeliac disease and the association with neurological conditions. It started to make some sense and I had nothing to lose by changing my diet and seeing what happened.
At the same time my 1 year old was referred to a Paediatrician with tummy problems she’d had since being weened. The Paediatrician told me he suspected it was gluten. I told him my experience and family history of neurological disease. He said he suspected it was all linked to a genetic condition and that he thought it was likely to be Coeliac Disease, which can easily go undiagnosed.
I drove home with tears in my eyes. Finally it was beginning to make some sense.
I started to feel different within a few weeks. And by different I mean more alert, less swollen (in my fingers, face, and tummy). Slowly a lot of the weird pains and symptoms reduced or went.
After a few months I knew it was a very significant change. It felt as if someone had switched the light on in my body and life. I started to read more about gluten intolerance and Coeliac disease and some little things began to click;
- unusual shape tummy as a small child
- raised red skin rashes
- I had ‘panda’ eyes
- Scoliosis of my spine
- my blood was refused as a donor due to low iron levels
- I had ‘chicken skin’ on my arms until very recently
- I bruised easily
- constant low energy levels I experienced since childhood
- my, shall we politely call it ‘wonky’, metabolism
- the strange bowel movements I had after eating pasta that had prompted my GP to refer me for a sigmoidoscopy.
I wrote to my neurologist to check in all my ‘extensive’ blood work if it included any checks for the markers of Coeliac disease. They hadn’t been included. I was gutted.
I followed up with a (very) polite e-mail asking that she consider such tests in future cases. I received a positive reply so hopefully this will happen.
MORE SCIENCE AND SOME ANSWERS
I spoke to more Doctors, I asked more questions but there were no tests I could have without reintroducing gluten, if only for a period of 6 weeks. This was not a risk I was willing to take.
In 2014 I was in a great place but still had a couple of niggling problems with my hands and feet. I decided to seek out help from the functional medicine I’d read so much about and went to see Naturopath. On her advice I had a full MOT and genetic screening to find the balance of the probable cause genetics, toxins, and or vitamin deficiencies.
The results were incredible. I couldn’t properly absorb B vitamins, a classic sign of Coeliac Disease and if untreated can lead to nerve damage and anaemia. I also found out I carry the genes for Coeliac disease and many genes associated with Multiple Sclerosis.
I was also fortunate to see Dr. Marios Hadjivassiliou, a consultant neurologist at the NHS Royal Hallamshire Hospital in Sheffield who runs a dedicated clinic specialising in gluten ataxia. He has also conducted research into the association of gluten and neurological disease and kindly left me as an open patient (so I can go back at any time) but I am very hopeful I won’t be returning.
I now eat grain-free, small amounts of dairy, grass fed and pasture reared meat and organic fruit and vegetables where possible.
I have just turned 40 and feel more healthy, energised and all round alive than I did at 20.
I hope the knowledge I now have will stop my girls and future generations experiencing neurological disease.
My period of illness has given me a great opportunity to reflect and look at all aspects of my life. I don’t believe health is ever just down to genetics, disease, diet and fitness. Life style and environment are major factors.
I am grateful for the amazing information, advice, studies and research I’ve been able to access. Thank you internet.
I am also forever indebted to some of the amazing people, Doctors, and yoga teachers I’ve met both virtually and in person who have been able to guide and help me.
THE MOST IMPORTANT THING IS THIS
I’ve shared my story because I hope that at some point now or in the future it might help you or someone you know, or someone they know….
I’ve learnt not to let anyone hold you back in life, especially yourself.
Go chase that dream, do whatever makes you happy and feel alive. Listen to yourself and your body.
Nobody however ‘well meant’ their intentions knows you and your body (health) better than you. TRUST IT.
This post is dedicated to my Mum and Granny Pam. Amazing, strong, vibrant and beautiful women.
Tabitha’s Gluten Free Dishes – Real Food. Healthy Fuel. For a Happy Life.
Real Food. Healthy Fuel. For a Happy Life.