I Have A Disease......But I'm Lucky..... (My Experience of Coeliac Disease)

Member Name: milmol

Product:	My Experience of Coeliac Disease
Date:	29/08/02 (1211 review reads)
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Advantages: Diagnosis means treatment and feeling better.

Disadvantages: No cure., Miss having butties., Difficulties eating out.

Somewhere in my past, in a time I cannot identify, my brain served noticed and initiated a divorce from my bowel. Before I was informed of this fact, 100% damage had been attained. There was no discussion, no grounds for the petition, and no possibility of appeal. It was irrevocable and I would have to learn to live with it or suffer the consequences. How did I reach this state of imperfection? well let me explain.

Symptoms ~ at age 20 I was always hungry, friends would joke I could eat a ‘tatty more than a pig’, yet I struggled to stay at 7 stone. In fact, a couple of missed meals saw me slipping to 6 stone something, I looked like a ‘shilling dinner’ to coin a Yorkshire phrase and my family said a good meal would kill me. Yet I was eating, eating and eating. What’s the secret you may ask??? I would love to be like that you might be thinking. Well that’s exactly what my doctor said. In fact, he said ‘Well if you find out what’s causing it tell me and we’ll sell it’.

Things progressed. I married and had a child, became a working mum. I was permanently tired but reasoned that this was life, I was busy, and I had a right to sleep whenever I could. In 1994 crunch time and potential diagnosis came with small cracks to the side of my mouth, coupled with mouth ulcers that came and went. The cracks were niggly, annoying but nothing more. I contemplated visiting the doctor but hey, you don’t die from cracks in the corner of your mouth do you? Doctors are for sick people; he’d think I was wasting his time. Eventually I went.
‘Have some antibiotic cream dear, that should do the trick, if it doesn’t come back’.
So off I trotted with my prescription, convinced I had wasted his time and a few dabs of the magic cream would set things to right – Wrong. The cracks proved immoveable, determined to remain a part of my face and unwilling to be evicted. So I retur
ned to the doctor.
‘Ok lets do some blood tests’ he said. Great, if a prescription doesn’t work lets starve the little blighters.

I meant to return, but hey I was busy, and a few days later a letter arrived at my home.

Please make an appointment to see the doctor regarding your blood test results. The level of iron, folate and B12 in your blood is dangerously low and requires treatment. DANGEROUSLY LOW. Oh my god, what is this. Vitamin B12 is essential for brain and nerve development; maybe this would explain the pins and needle sensations I had been getting in my fingers.

The doctor said I had anemia.
Did I drink a lot? NO.
Was I vegetarian? No.
Time to see a haematologist at the hospital then. Until then B12 injections and oral iron tablets. Ok, I can do this.

Further Investigations ~ After taking a detailed history and examining me, the doctor at the hospital decided I needed an endoscopy. Although there are other causes of iron deficiency the doctor felt my symptoms and past history suggested malabsorbtion. There are blood tests available now that may suggest coeliac disease although an endoscopy is still needed to confirm the diagnosis, back then it was straight in with the big guns, so endoscopy it was. This is an examination of the stomach using an instrument called an endoscope, a fibreoptic light is transmitted into the stomach using a flexible tube. During the procedure they planned to take a biopsy of the upper end of my bowel. I was offered a general aneasthetic although I was told this would mean a longer stay at the hospital and anyway they reassured me, most people were very comfortable with a spray to numb the back of the throat.

The Endoscopy Experience ~ Now it is not my intention to frighten anyone, I’m sure I’m just a big baby, but I wouldn’t have this procedure again without being knocked right out of consciousness but that’s just me. The
tube is placed down your throat and ok the throat is numb, but the gag reflex doesn’t seem to have got the message yet and constantly tried to eject it by retching. Caring nurses promised me that the procedure was nearly over, but being one of them I should have realized, they lie. They do it to comfort and protect you but a nurse’s minute is a hell of a long time when you are the patient. I have to say some people do not share my wimpish attitude, but some do.

The Diagnosis ~ Coeliac Disease. Please see the dietician immediately and change your whole way of eating.

Definition ~ Gluten induced enteropathy. Due to intolerance to the protein in gluten, found in wheat, rye, barley and oats. (Interestingly some people can tolerate oats.) Sensitivity occurs in the villi of the small intestine and produces malabsorbtion syndrome.

Lay Mans Terms ~ Villi are little finger like structures in the bowel and they increase the surface area enormously. For some reason the body decides Gluten is the enemy and so it attacks it, in doing so it also destroys the villi, thus leaving the bowel unable to absorb nutrients needed to sustain health. Soon people experience diarrhea and abdominal pain, others have vague symptoms or recurrent mouth ulcers, anemia or a general failure to thrive.

The Gluten Free Diet ~ Coeliac Disease is incurable, however it is treatable, and hence I consider myself lucky. Treatment consists of removing all traces of gluten from the diet, this includes the usual products such as bread, pastries, pasta etc, but gluten may be found in any processed foods i.e. table sauce, premade meals, gravy granules, mustard, even crab sticks. I soon became expert at reading labels and deciding which foods were safe. Even lipstick can contain gluten, as can the glue on stamps; gluten free foods can also be contaminated by being in contact with gluten, i.e. placed somewhere that gluten items have been.

Prescriptions ~
Several gluten free foods are available on prescription. Bread, biscuits, pasta and flour are available yet despite this I personal don’t have any. None of the breads I have tried taste like bread, more like cake, and I live happily without cake and biscuits. I also pay for my prescriptions and although I could purchase a prepayment I chose not to bother. From 1st April 2002 a 4 month prepayment certificate costs £32.40 and a 12-month one costs £89.00. Some people may be entitled to free prescriptions for other reasons, if you are not sure you can look in leaflet HC11 (Help with Health Costs) that is available at Post Offices, some pharmacies or GP surgeries. You can also obtain a copy by writing to Department of Health, P O Box 777, London SE1 6XH or look at www.doh.gov.uk/nhscharges/hc11.htm
Reality ~ There are plenty of foods allowed. Fruit, veg, rice, meat and potatoes that are unprocessed are safe and so are many products. Sainsburys make life very easy by clearly labeling their produce that is gluten free, and they sell a wide range of GF biscuits etc.
For anyone struggling with the condition I recommend they join the celiac society. Their web page is http://www.coeliac.co.uk/ They can provide you with a wealth of written information, and a little book that is updated every year and includes most major manufacturers, stores and gluten free foods. I call it the Coeliac Bible, joining on line also allows you to receive emails form them and they inform you of any changes to the book during the current year. Planning is essential for things like packed lunches and work but I find it easy now I am used to the diet. Salads are fine, chicken, some soups i.e. Heinz Big Soup Beef and veg and many other premade and microwaveable meals as directed by the handbook. Some people make their own GF bread but again I have tried many bread mixes and personally would rather do without.

Negative Aspects of The Diet ~ Eating out can be difficult. Most buff
ets are sausage rolls and sandwich type things. A word beforehand usually means a salad can be offered in its place although I personally find comments from others such as ‘Why have you got a salad? Where did you get it?’ slightly embarrassing. I am reluctant to enter discussions about my condition as I find it boring and particularly as it usually means some reference to bowel movements which I don’t feel is appropriate so I usually say I am allergic to Gluten. This statement is frowned upon by the Coeliac Society who stress it is an intolerance NOT an allergy. Well in my experience saying allergy stops the conversation quicker as people understand this word and as its my disease and my diet and I have no desire to educate the world on an evening out I’ll personally say whatever I choose. I do avoid some places, i.e. when friend go for Pizzas or Italian but usually a quick phone call to the restaurant will tell me if there is something on the menu I can eat. I am also expert on all the local pub menus and know where it is safe for me to eat out.

So there it is, I have a disease, but I’m healthy and well and will live just as long a life as I can. And by the way, the most negative aspect of the diet?????? My weight went up 2 stone because of my body’s newfound ability to absorb the goodness from food. I sometimes think a quick dose of gluten would do my figure some good, but then I remember the tiredness and inability to function, so no, I’m bigger but healthier. The feeling of well being is the best part of the diet; I just have to remember how lacking in energy I was before. So to anyone just finding out they have this disease, remember, there are many worse things to have, so get on with life, and enjoy……….

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