Eileen Bicknell co-founded the Gluten Free Message Board eight years ago after being diagnosed as a Coeliac in 1993. She has kindly given us some of her top tips on how to live a full and active life with Coeliac Disease.

 

My diagnosis

I was born in May 1956. As a child my mother was often concerned that I had anaemia, as I was suffering with diarrhoea, was underweight and was not thriving as much as my two older brothers were.

In 1978 and 1980 I was blessed with two healthy sons but, after the birth of my youngest son, I became quite unwell. Again, I was anaemic, suffering with diarrhoea and also had lost a fair amount of hair. However, after a period of approximately two months, I improved although the anaemia remained.

During the summer of 1993 I became very unwell whilst on a holiday abroad. When I arrived home, I visited my GP and she suggested I be referred to a gastroenterologist. At this stage, I had all the symptoms as before but my weight was down to an alarming 6 and a half stone. The gastroenterologist carried out a gastroscopy and confirmed that I had Coeliac Disease, I was then 37 years of age. He told me I had to adhere to a strict Gluten Free diet for life. Obviously, I immediately felt a wash of relief that I did not have cancer.

Well, now it was time to carry out my first Gluten Free shop at the supermarket. Suddenly, it hit home because I quickly realised that gluten is in so many things! That particular shop took well over two hours at the end of which I was close to tears. This, afterall, was sixteen years ago and we did not have the luxury of Mr Google then to assist with shopping ideas, etc.

Thank you for taking the time to read my story. I hope my tips below are of help. If you should happen to be following a Gluten Free diet for whatever reason, perhaps I'll 'meet' you on the Message Board one day!

Best wishes.

Eileen Bicknell (Bristol, UK)
 

Coeliac UK

I joined the Charity Coeliac UK and they posted me leaflets. Coeliac UK print a handbook annually which lists the supermarkets and Gluten Free items, along with manufacturers. It can help to take this handbook shopping, especially in the early days. (It is important to check for monthly deletions/additions on their site, however, and keep the handbook up-to-date). I wrote to manufacturers requesting samples of Gluten Free bread, pasta, etc and this enabled me to find a few favourite items. It was time to go back to basics as far as cooking was concerned and I always recommend this action for newly-diagnosed Coeliacs. Fortunately, I have always enjoyed cooking and this has no doubt helped me with experimenting when trying to cook without gluten. In my opinion it is best to gradually bring new Gluten Free items into the cupboard, such as stock cubes, cornflour, gravy mix, sauces, etc.

My advice for a newly-diagnosed Coeliac

1. Learn which foods are naturally Gluten Free.

2. See a dietitian, (your GP can arrange this).

3. Talk to your GP about getting Gluten Free products on prescription.

4. Talk to other people in the same situation (remember the link for The Gluten Free Message Board as below!).

5. Check out your local supermarkets and internet for Gluten Free products.

 

The Gluten Free Message Board

Approximately eight years ago, a few friends including myself, all Coeliacs, started off a Message Board on the Internet.  It is an extremely active Board, quite a 'community' in fact, and a tool which enables us all to help with advice, support, recipes and even a place to 'ventilate' about the Coeliac condition, if needed sometimes!

Yes, Coeliac Disease is inconvenient but I am so grateful to have my health back, plus I have made some good friends through this Board. We are all volunteers with no remuneration whatsoever. We do our best to keep advertisements off the Board, although there is a Suppliers' link for Members to use. There is no charge to Members. Coeliac UK recently removed their link to our Board when they re-designed their website but, thankfully, they have recently re-installed it. For most newly diagnosed Coeliacs their first port of call is the Charity and, therefore, the moderators were concerned many 'newbies' would not find 'Us'.

 

Managing Coeliac Disease

I have a six-monthly check-up with my gastroenteroligist. My weight is now stable; actually, I need to lose a few pounds!

Blood tests are taken to check if the gut has healed enough to allow me to get all the nutrients I need and to make sure my antibody levels are normal.

If you have not had a bone scan, you should discuss this with either your GP or your gastroenterologist who will be able to refer you for a scan if they think it is necessary. Any decisions about this are dependent on the results of an initial bone scan.

It is worth purchasing an annual Pre-Payment Certificate for prescriptions. Once you have this Certificate, all prescriptions are 'free'. Here is a link

 

 

 

Travelling

I enjoy travelling abroad and before departure I print off cards in the relevant language from this site.  These cards are very useful to show waiters and chefs when eating in restaurants.

I have discovered that my digestive system copes much better by living with a Gluten Free and Wheat Free diet. These days Gluten Free/Wheat Free pitta bread amongst other items are readily available in the supermarkets. I have a busy lifestyle and find the DS Gluten Free and Wheat Free sliced bread, very convenient, especially when travelling abroad. It is vacuum packed and less likely to break in my carry-on bag.

About Coeliac disease

Coeliac disease (pronounced see-liac) is not an allergy or simple food intolerance. In fact it's an autoimmune disease, where the body's immune system attacks its own tissues. In people with Coeliac Disease this immune reaction is triggered by gluten, a collective name for a type of protein found in the cereals wheat, rye and barley. A few people are also sensitive to oats.

Contrary to popular belief, you do not need to be underweight or have lost weight to have coeliac disease. Most people are of normal weight or even overweight at diagnosis.

When someone with coeliac disease eats gluten, their immune system reacts by damaging the lining of the small intestine. A Coeliac not adhering to the Gluten Free diet can lead to some serious illnesses such as Osteoporosis and Lymphoma.
 

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