3 The Food Allergy and Food Intolerance Report The Impact Of Food Allergies And Intolerances On Peoples Lives In The UK Today Published January 2007
Introduction I have to be very careful with my diet, but sometimes I give up because I am too exhausted. Then all my symptoms get worse and it becomes a downward spiral and sometimes I think Maybe this time I won t get the energy to fight back to health. Joseph H, from Kendal. Muriel Simmons, Chief Executive of Allergy UK Allergy is a multi organ disease and the ways in which sufferers are affected are many and varied. In 2003 Allergy UK introduced the Stolen Lives series as means of highlighting the facts, and the difficulties that sufferers face. Previous editions have looked at the problems caused to sufferers by the lack of general allergy services and the impact on lives for those suffering from rhinitis and allergic asthma. These can be found on our website www.allergyuk.org This edition deals exclusively with the problems facing those suffering from food allergy and food intolerance. During 2006 there were reports in which a small number of the medical profession claimed that food allergy and intolerance was all in the mind and even on one occasion the suggestion that the mind could be trained to cause food allergy. Allergy UK totally refuted these ideas and felt that the next edition of Stolen Lives should give a voice to those suffering abnormal reactions to food. It is generally accepted that 2% of the population suffer from IgE mediated food allergy and anything up to 45% suffer from some form of food intolerance. In our survey of 5,200 people it emerged that 59% of the people responding reported regarding themselves as having a food intolerance and 41% considered that they had classical food allergy. Sadly what emerges from this survey is that sufferers generally feel that their GPs lack understanding of their problems and are inclined to dismiss their symptoms as psychological and not food related. In the words of Lisa from Harrogate multiple allergies, including food reactions are so stressful to live with and nobody seems to understand We hope that this report will highlight the problems facing sufferers and will lead to greater understanding of the difficulties they face.
So What is Food Allergy and Food Intolerance IgE mediated food allergy is an inappropriate and harmful response of the immune system as it mistakes a perfectly normal substances and treats it as an invader. Allergic symptoms can range from relatively minor rashes, blocked nose and stomach ache through to generalised swelling, tingling of the mouth, projectile vomiting, diarrhoea, asthma, collapse as a potentially fatal anaphylactic shock occurs. An allergic reaction can occur quite rapidly, often within minutes but generally within a maximum of two hours. Food Intolerance is quite different, it is not life threatening although it can and does make the sufferer feel extremely unwell with symptoms such as bloating, nausea, diarrhoea, vomiting, headaches, migraine, IBS, eczema, joint pains. Catarrh and runny nose. It is very difficult to identify the food that is causing the problem as symptoms can appear up to 48 hours after the food is eaten. In our survey we asked:- Do you have a reaction immediately (seconds - 3 hours) after you have eaten certain foods or do you have a delayed reaction (4 24 hours)? Immediate 55% Delayed 45%
Allergy UK always advises callers to our helpline to keep a food diary. We asked those taking part in our survey:- Have you ever kept a food diary? No, 34% Yes, 66% From this it would seem that people are making every effort to try and identify the food and to provide as much information as possible to their healthcare provider. We asked:- Have you been experiencing any of the following symptoms? Aches and Pains 6.1% Wheezing and Coughing 8% Bloating, Diarrhoea, Vomiting, Indigestion 19.7% Rashes 5.7% Lethargy and Anxiety 11.9%
Headaches 5.6% Blocked or Runny Nose 6% Suffering from more than one symptom 37% Due to constant diarrhoea I am tired and lethargic all the time. I now know that it is due to food intolerance but it has taken me to the edge and ruined my life for two years Patsy from Bolton. Straying off the diet causes really bad rashes. I try not to scratch but during the night in my sleep I scratch and wake up in the morning covered in blood Gail from Wolverhampton. Something as simple as having an ice cream makes me wake up the next day with blocked nose and feeling as if I have a hang over Jim from Gravesend. My symptoms vary from chest pains and breathing difficulties to migraines and stomach problems, it s a total nightmare Edward from Liverpool.
We asked:- Have you ever had to take time off work or school because of your symptoms? YES 55% NO 45% I am a student and I need to work but can t find a job because of my problems Paul from Stoke. Before I was diagnosed as intolerant to cows milk I found it very difficult to complete day to day tasks which affected the quality of my work I had my own business but as my symptoms got worse I had to sell it People regard me as sickly and I have to work hard to appear professional Janine from Warringon. John from Ventnor. Ahmed from Bolton. The school tries to be as supportive as possible but it is very worrying when other children use my son s severe allergy as a means of bullying Janet from Dawlish. I failed my second year exams and have had to repeat this year, all because of my allergies Brian from Bristol.
We asked:- Whether allergy symptoms affected daily life. Two thirds of respondents reported that their sleep was interrupted throughout the night. 66% reported that their ability to travel abroad was difficult. Three quarters felt their social activities were considerably affected by their symptoms. It is difficult to go out and socialise or to go to any event. It puts a strain on marriage and family. My symptoms govern just about everything we do June from Manchester. I can no longer do any sporting activities and have had to stop going on holiday. My symptoms have made me feel suicidal It makes me very sick and tired and sometimes I feel like giving up Terry from Durham. Michelle from Cambridge. We asked:- How many times do you visit your GP with your symptoms? 62% of respondents stated that they visited their GP at least six times a year regarding their symptoms. 14% of respondents visited their GP at least twelve times or more a year. An astonishing 26% of respondents stated that they did not visit their GP at all inspite of having symptoms
Do you think that your GP understands your food problem? 67% respondents stated that their GP did not understand their food problems. 33% respondents felt that their GP did understand their food problems. I got fed up with going back and forth to my doctor who either said it was in my mind or to cut down my stress levels Julia from Folkstone. I would say that the NHS did not help me one little bit and I found resolution off my own back George from London. My son has been told that his allergies and asthma are a result of his parents being over protective and we have somehow put into his mind that he has these problems Pauline from Barnstaple. I haven t bothered my GP with my food intolerance as I feel that they are too busy to spend time and money on helping with this We asked:- Barry from Chichester. Are you under the care of an allergy specialist or dietitian? Specialist 22% Dietician 10% No 68% I am extremely frustrated as I want to find the cause of my problems but my GP is very negative and there is a lack of specialist knowledge locally Frank from Stockton. After being consistently fobbed off by my GP I bought a mail order test. The service I received was excellent and after following their advice my symptoms are now virtually gone. Why can t these tests be prescribed, in the long run it would save the NHS money David from Whitstable.
It is disgusting that there is so little help on the NHS and the GP has no knowledge about food and its impact on health Mary from Whitley Bay. It is accepted by my GP that I am milk intolerant but he had not recognised that milk was involved in the tablets I was being prescribed. After six years of misery I was referred to a specialist after admission to hospital and finally it was sorted out but six years have been taken out of my life Finally we asked:- Sarah from Swansea. How do you think the NHS can improve diagnosing and treatment of patients with food allergy and intolerance? It was difficult to choose from the flood of suggestions, but here are a few of the patient s views. Specialist allergy nurses would be good as they are often more knowledgeable and give more practical help Christine from Newquay. Make sure that advice being given is right. We were told that it wasn t possible to see a specialist on the NHS when our child had a severe reaction to nuts and that we would have to go privately. Allergy UK advised us that there was a local NHS allergy clinic and since we have seen the specialist life is looking much more hopeful Joe from Stoke. The NHS could improve their treatment of patients by taking the subject more seriously and putting more money aside for tests. By doing this NHS would save money in the long run as food allergy and intolerances may lead to more serious conditions if left undiagnosed Sanjay from Ipswich. IBS is an easy answer for GPs when they really don t know what is causing the symptoms; improve the range of testing on NHS and take us and our symptoms seriously Esther from Crewe. I was diagnosed by the third dermatologist I saw and was the only one who took my symptoms seriously. I have not been referred to a dietician due to the long waiting list and the fact that I am a health professional so I am expected to know more than others about nutrition not the case but self learning is in progress. To be seen by an allergist would have been more beneficial and, I suspect, involved less time and money to the NHS and myself William from Hemel Hempstead.
Allergy UK is a national medical charity established to increase understanding and awareness of allergy and intolerances, to help people manage their allergies and to provide training in allergy for healthcare professionals including Doctors, Nurses, Dieticians and Pharmacists. Allergy UK is the operational name of the British Allergy Foundation a charitable company limited by guarantee and registered in England and Wales Company No: 4509293 Charity No: 1094231 For further copies of this report contact Allergy UK on 01322 619898 Allergy UK Helpline Number (9am-5pm Monday - Friday) 01322 619898 Allergy UK www.allergyuk.org