Total food intolerance – Clare's story
In less than a year Clare has lost four stone, and is reduced to six foods that she can, just, tolerate. She can see no end in sight, the hundred of doctors and specialists who have seen her over the last year have no idea why her immune system suddenly turned on the food she ate and has reduced her to a walking skeleton.
After a few stressful years things changed and life looked as though it couldn't have got better for us. I have a wonderful husband and two fantastic kids. My husband has his own business which is stressful for him at times. I don't have to work, which is great because it has given me the time to look after the family and take away any additional pressure from my husband. My job was to run the house, and life was busy with two teenage kids and a dog.
In the spring of 2011, I began getting abdomen pain, stomach and side pain. I went to my GP who arranged for a few tests to be done. I had an ultrasound, endoscopy and X-ray, which were all normal. Over the summer the pain began to get worse and I felt generally unwell. I also began to get cystitis regularly and I kept getting a hoarse throat.
Could it be something that I am eating?
I had further tests done at Christmas 2011, including another endoscopy with biopsy and a barium X-ray. These were again both normal. I continued my gluten-free diet over Christmas and had mostly good days with a few bad.
Pure Health Clinic tests
But not just gluten – everything...
I was in hospital for four weeks, during which time I had every test going, including gastroscopy, CT scan, capsule camera, and various blood and urine tests. I was seen by an immunologist, a professor, several gastroenterologists, an allergist, dieticians and a dermatologist, but they could find no reason why I could not tolerate food. The only thing that has shown up so far is some inflammation of my stomach. I was fed on Elemental 028 for a few days via a nasal tube, but that made me extremely unwell. I was then put on intravenous TPN (Total Parenteral Nutrition) for 8 days, and I even reacted to that! My body was reacting to everything!
It's not IgE so it doesn't exist...
A couple of Doctors have admitted that science hasn't given them answers to everything, and that they still have a lot to learn about the immune system.
Fellow sufferers are the only ones who have any idea
And mentally, I am just fine
I was a bright, happy, energetic, slightly overweight 45 year old. Now I am a shadow of my former self. My husband and children are worried sick about me and I have to admit I think my days are numbered. I have made my Will and have spent a lot of time sorting stuff out to make things easier for my husband in case I die. We are now looking to re-home our beloved dog because I can no longer walk him. I am living on about six foods: venison, rhubarb, turnips, swede, dates, and dried cherries. These are the foods that give me the least reaction but they still make me feel awful. Week by week my reaction to these foods is getting worse.
However, there may still be just one glimmer of hope for me. I mentioned earlier about a man called John Scott. He too had Total Food Intolerance, but he has found help from a very unusual experimental therapy called Helminthic Therapy. (You can read John's story here.)
John, and a growing number of other people with Total Food Intolerance, have found that they have been able to tolerate foods again about three months after starting this treatment. You can read reports from over a dozen of these pioneers in this document.
As I can find no other way to treat my own food intolerance, I have decided to join the 'citizen scientists' who are experimenting with this therapy and have recently inoculated myself with 35 hookworms. I'm now waiting to see what happens.
Thank goodness that there is information about Helminthic Therapy on the internet and a Facebook group where you can chat about it with other users. Without this information and support, I dread to think what I would have done.
Why did I want to tell this story?
I decided that I wanted to write my story for two reasons. Firstly, the more people who hear about Total Food Intolerance the better. I need to get the message out there. Even some of my family and close friends are struggling to understand and accept what I am telling them. At times I can barely believe it myself! It's bad enough that doctors don't believe you but, when friends and family don't, then you are in a very lonely place. I wouldn't wish this on anyone.
First published in October 2012