Total food intolerance – Clare's story

'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.'

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.

My day would start with breakfasts, packed lunches and the school run. I'd meet my friend and we'd walk our dogs for over an hour every day. Some days we'd take a drive out to the Derbyshire Dales and spend all day walking. I'd pick the kids up, make tea, help with homework, ferry kids around to various activities and do what mums do.

The start....

I've always had a good appetite, been able to eat anything and enjoyed cooking. I loved my life.

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.

I went to A&E a couple of times during the summer of 2011 as the pain was so bad, but they sent me away with Buscopan. By October, the pain was so bad that I returned to A&E. This time they kept me in for a week. I had a CT scan, which showed a narrowing of my colon, and a colonoscopy, which was normal. They sent me home and told me to forget about it and go on holiday - suggesting that it was all in my head.

Could it be something that I am eating?

It was after my stay in hospital that I began to wonder if it was something I was eating that was causing my pain. I knew I ate a lot of cereals and milk so I began a gluten-free diet and kept a food diary. After a couple of weeks, I began to feel slightly better but still not completely well.

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.

On the 26th January this year I had extremely bad abdominal pain that was caused by brown rice. I have never known pain like it, I was in agony for three days. A week after that I had another colonoscopy, and again it was normal. The doctors sent me away with no answers about my pain.

Pure Health Clinic tests

Ever since I had the brown rice in January, I have been extremely unwell. In desperation for some help with my pain and terrible malaise, I hunted the internet for some answers. I found a wonderful nutritionist, Micki Rose, who arranged for me to have some allergy testing done and a gene test.

I had blood taken on 20 February and sent to a laboratory in America. I had IgM, IgG and IgA tests done on 96 foods. When the results can back, they showed intolerances/allergies to lots of foods. My gene test came back positive for all four HLA-DQ gluten sensitive genes.

Gluten sensitivity

My nutritionist, having spent years studying the effect that gluten has on the gut in genetically pre-disposed people, explained that gluten causes the intestinal wall to become permeable, allowing food particles to enter the blood stream. These undigested particles are then attacked by the body's immune system (like a virus). The body then remembers the invader and every time you consume that food the body attacks it. That is how allergies and intolerances are created. I knew my gut had become 'leaky' from the gluten damage but if I followed my nutritionist's diet and gut repair plan, then I thought that, although very restricted, there were enough foods for me to live on. She also explained that there is gluten in corn and rice as well as wheat, barley, rye and oats. At last I thought there was a light at the end of my tunnel, but I couldn't have been more wrong!

But not just gluten – everything...

As the weeks went by during Spring 2012, the intolerances became far worse. I started reacting to many more of my 'safe' foods too. I began to realise the seriousness of my situation. I knew what was happening to my body and I became very scared. I had another gastroenterological appointment in March, where I saw a registrar. I told him that my body was reacting to all these foods and how frightened I was. To my horror, he laughed and told me it was not possible to be intolerant to everything!

A few more weeks passed. I suffered terrible malaise, pain all around my abdomen, headache and migraine, sore throat, cystitis and rashes, and my hair began falling out. I'd lost 4 stone in weight since October. Eventually I collapsed at home in April and was again admitted to hospital.

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...

It's now October 2012. I have seen probably hundreds of NHS doctors, nurses, and dieticians, etc., over the past 18 months. I have spoken to every one of them about my severe food intolerance, but food intolerances are largely un-recognised by the medical profession. The problem is that they do not have a test that proves what I say is true. They would rather think it's in my head! The only allergy tests that they recognise are those that create an IgE reaction. They will not accept my IgG, IgM & IgA tests as evidence.

Another consultant gastroenterologist told me this week that IgG immune reactions are the type of reaction you get when the body finds a virus or foreign invader, which is my point exactly. My body has created antibodies to my food because it thinks I'm being invaded by a virus.

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.

I am an extremely poorly lady. I cannot accept that 'Total Food Intolerance' is not a recognised condition and that I will have to 'go it alone'.

Fellow sufferers are the only ones who have any idea

The only people who seem to understand how I am suffering are other people like me; and, yes, there are other people like me – LOTS of them, in fact! The internet led me Foods Matter, where I found a man called John Scott. He had suffered from Total Food Intolerance for 20 years. He lived on semi-elemental infant formula for 15 years, and has heard from lots of other people suffering the same fate, none of whom have had any help from the NHS. I have tried the semi-elemental feeds but have yet to find one I can tolerate.

Sadly, John has also heard of people dying because they can no longer find any food to live on. As my intolerances and pain get worse every day, I am now beginning to wonder where will this end for me. Anyone who has food intolerance will know how desperately ill you are when you eat that food. Imagine if you had to eat something that was poisoning you everyday of your life. How much of that could you take?

I see my GP every week and he weighs me. He is at a loss to know how he can help. He has run out of specialists to refer me to. He cannot believe the change in me.

And mentally, I am just fine

I've even had a psychiatric assessment to prove that I do not have depression or any deep rooted psychiatric disorder. Mentally I am 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.)

Helminthic therapy

Helminthic Therapy is a type of immunotherapy. It involves patients inoculating themselves with a low dose of helminths - a type of parasite (actually a symbiont) that lives in the intestines. The theory behind it is that, over millions of years of living with mankind, these tiny worms have learned how to modify their host's immune response. Our immune systems have also got used to having the helminths around, and were constantly occupied with keeping the worms in check. The problem now is that we in the West have got rid of these creatures in the last few decades. Consequently, our immune system no longer has a legitimate target to attack, so it goes for other things, like food.

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.

Doctors need to hear that there are many people who are suffering terribly as a result of overwhelming food intolerance. Perhaps if more of these people told their stories, doctors would start to take this condition more seriously and stop dismissing patients who report symptoms like mine.

Mine is an extreme case, but there are other people struggling to survive on very limited diets with no help or advice from the medical profession. I will never accept that, in the 21st century, there are so many people suffering horrendously every day, yet being denied help by their doctors.

Scientific research is being done into the workings of the immune system but, sadly, I don't think it will come to fruition in time to help me. There are drugs currently available that are used to treat other auto-immune diseases that could potentially help me but no doctor will prescribe them unless there is clinical evidence to back up my claims.

I think it's appalling that doctors have not been able to help me, and unbelievable that so many of them have doubted what I have told them about my symptoms. They seem to have a set of diagnostic boxes into which they place people, and, if you don't fit into one of their boxes, there can't possibly be anything wrong with you! I also can't believe that they aren't taking Helminthic Therapy more seriously when it seems to be helping so many people with Total Food Intolerance. In fact, many doctors seem to dismiss this treatment without even looking at it in any detail.

The other reason I want my story to be told is for my children. So many times over the past 18 months it has been suggested that it might be 'all in my head', so I want my children to read my story in my own words. If I die, I don't want them to be told that their mother died from some kind of eating disorder or mental illness. There is nothing wrong with my head. The problem is that my immune system is attacking my food as if it were a virus.

I have since learnt that my grandfather had food intolerances and allergies. I never really knew him as he died when I was only 5. Apparently he was a baker in his younger days but had to give it up because he was allergic to the flour. My children may also be genetically pre-disposed to gluten sensitivity and may go on to develop intolerances themselves. If they know my story, then they may be able to do something about it before it becomes serious.

First published in October 2012

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