My story is definitely a story of hope, hope for a healthy future symptom free. A bold statement I know, but a positive attitude is a very good place to start.
On April 9th this year I went to see my Gastro specialist to receive the results of my endoscopy, colonoscopy and MRI . The results were not what I had expected, rather than Coeliac Disease, he announced that I had Crohns disease an Inflammatory Bowel Disease, He reeled off the medication I would be offered and sent me away to do my own ‘homework’. With a second appointment booked for this August.
I was in a state of shock. All my symptoms pointed to Coeliac disease in fact I had most symptoms on the list and had removed gluten from my diet about 4 years ago. Since then I still had occasional stomach cramps , nausea brain fog , anaemia etc due to new intolerances that had started appearing . Firstly yeast ( vinegar wine etc ) then onions and recently garlic. All due, I would say to having a Leaky Gut.
Let me take you back to the beginning 1978, I moved with my family to Hastings. It meant I had to move senior school after just making friends and settling into the school, and live in a very different part of the country. In fact the lovely county of East Sussex England by the seaside. Sadly for me a nervous shy young girl this was an incredibly stressful experience and from the day we moved I started to have symptoms a loss of appetite , stomach cramps and an excessive fatigue. My senior school years were very tough, I now know why! Poor concentration and feeling unwell and very tired led to me not achieving the results I should have done. A diet full of gluten, sugar etc like every other teenager in the late 70’s early 80’s . Obviously not helping the situation, but hindsight is a great thing isn’t it.
My weight plummeted, weighing around 6 stone my parents took me to a doctor who brushed it off saying she’s a fussy eater let her have what she fancies. Which of course was lots and lots of gluten, sometimes 6 slices of white processed bread at a time. Due to my low weight , looking back I definitely looked anorexic ( and for I while recently wondered if that had been what it was ) I did not start my periods to the age of 19 making me very different from all my female peer group. I continued to be quiet and shy and family became more and more concerned about me. I had, by this time become very interested in healthy food , baking and cooking and had gone to college to study catering. After a year on this course my symptoms continued to worsen making the physical part of my course impossible.
I left and started working in a Children’s Nursery, became qualified, loved the job and started eating better. Met and married my husband Tim and had two beautiful healthy sons. Still continuing to have symptoms which became worse when I started to drink alcohol at the age of about 28. Visited doctors many times always given the diagnoses of *IBS ( irritable bowel syndrome ) told to eat more roughage, whole grain bread etc and sent home with peppermint capsules. My symptoms were definitely at there worse. I remember begging my husband to finish me off ( a little dramatic I know ) but the pain was unbearable. At that point we should of gone to A & E but we never did, we just had no idea what to do.
This continued until about 7 years ago when I read something about a wheat free diet and how it helped people with my symptoms , I tried this but with no real improvement. Then a few years back I started tweeting and in a short space time heard about a gluten free diet and I started to follow that. Very quickly I was having less symptoms and the more knowledge I gained the less symptoms I began to have. Less tiredness more energy less stomach cramps and nausea. I had never felt better .
Keen to pass on what I had learnt I started a WordPress blog Fabulously Free From. Where I write about what I bake gluten free and other free from recipes etc. In doing so I have learnt a vast amount about Coeliac disease, it was like a light bulb going on . Everything I read sounded like me I recognised my symptoms in many of the Coeliac tweeter on Twitter and things Coeliac bloggers were writing.
Unfortunately for me, by this time I had been living gluten free for about 4 years and apart from occasionally being ‘glutened’ from cross contamination, gluten was a distant memory.
I went back to the GP armed with a greater knowledge and was told they would do a Coeliac blood test. Sadly I knew this would come back negative but the doctor was adamant . As expected it came back negative. I booked to see a different doctor and to my great joy he took on board everything I said and referred me to a local Gastro specialist at our local hospital. It was a huge step forward!
After meeting with the specialist I was booked in for colonoscopy and endoscopy on the same evening. I have to admit I was incredible nervous at the prospect of going into hospital. Apart from having my 2 boys I had never spent a day in hospital. My Church family were an incredible support to me at this time and I most definitely felt the results of there prayerful support. I walked in that day feeling calm and almost excited about the prospect of getting to the bottom of my problems, no pun intended.
Me, straight after the procedures
The evening went as well as it could have done but came home really none the wiser. I was told that my Gastro wanted to do an MRI as the procedures were not conclusive. The day came for my MRI to be performed at a local private hospital. This was one of the worst experiences I have ever had. I was left for a very long time in a thin gown in a corridor with nothing on my feet. I became very cold very quickly and by the time I went for the MRI I was shivering uncontrollable. Anyway many blankets later and a 45 min scan (which I found fine) I was sent home.
During this last year I have done even more research into fixing my insides using healhy eating and reducing stress. After almost 30 in childcare I reluctantly gave in my letter of resignation to my place of work. A wonderful children’s nursery where I had worked on and off for about 19 years , but unfortunately full of gluten in many forms ( snack time, play dough, packed lunches, staff biscuits )
I also started following the Specific carbohydrate diet, removing all alcohol and all refined sugar and most fructose. I had started to read many accounts of people with stomach and bowel disorders ranging from Inflammatory bowel disease to Coeliac Disease and other autoimmune disease. I immediately felt the benefits No bloating what so ever and no other symptoms, this was exciting stuff!
I’m not saying I found this easy but because I am very anti drugs I wanted to do everything in my power to give myself a fighting chance , along with the power of prayer I believe I have seen a vast improvement in my health.
This brings me back to April 9th this year, My results showed no sign of Coeliac disease, but the Gastro specialist agreed that if I had been free of gluten for 4 years then it wouldn’t show up and the positive thing was that there was no visible signs when doing the endoscopy. This was good news being gluten free was obviously helping. The results from the MRI and colonoscopy showed some damage in my bowel, My husband came with me to take notes as I knew I wouldn’t take information in. He wrote down terminal ileitis and sub set crohns terminal ilium . Whatever that means! We were not even given correct spelling or even a simple leaflet about the disease. I hope this is not most people’s experience.
I was really disappointed and a little shocked to hear this. Felt a little like I was free falling and at this point would have liked to have spoken to a specialist nurse who would of had time to explain things.
I went home and couldn’t bring myself to look up Crohns disease. My Cousin and Uncle had Ulcerative colitis ( which I had mentioned to my GP a few years ago ) and have had a very tough time, quite honestly I was terrified. Then a wise Twitter friend reminded me that I had only been given a new label and that nothing had changed and actually I was beginning to manage it well and there was no reason why this shouldn’t continue. I really needed to hear that!
I still cant bring myself to do much research as everything I find sounds nothing like me. I have never experienced any bowel problems, which seem to be a big issue with Crohns disease. Maybe I am fortunate to have a mild case and hence that could be why. Or maybe having Coeliac disease for so many years I have now got a Leaky Gut and Crohns symptoms. I’m no doctor so I haven’t a clue.
What I do know is that I have never felt better. Bags of energy, no bloating, constant healthy weight, no cramps or nausea and I never feel hungry. The Specific carbohydrate diet has been a revelation going grain free is not easy and leaving out cows milk was tough. I also make sure my diet is not only low carb but high fat ( good fats including coconut oil and cheese etc ) But there are so many positives and so much delicious food I can still eat I am going to continue with it and see what happens next.
I hope this has been of some help to others with similar symptoms .
Here’s to a healthy future, eating well and enjoying life to its fullest.
For more information @crohnscolitisuk
Specific carbohydrate diet info –
A grain free, sugar free and gluten free diet Free from many complex carbohydrates like potatoes.
The diet was first developed by a New York physician Dr Stanley Haas
Books to read – Breaking the vicious cycle: intestinal health through diet
cooking for Specific carbohydrate diet by Erica Kerwien
*IBS Irritable bowel syndrome is Not Inflammatory bowel disease – It is a common condition of the digestive system