Jackie’s diagnosis story

25 February 2021

Jackie’s diagnosis story

I actually had my coeliac diagnosis in 2003, which was 18 years ago when I was 45: As a child I suffered regularly from severe abdominal pain, usually at night. In those days the GP would visit the patient at their house, I think possibly I just got used to the pains and had a fairly normal childhood.

Jackie’s coeliac symptoms persisted…

From about the age of 22, I was a mother of two children by then, I was always tired and suffered from headaches regularly. I was always anaemic and was regularly prescribed iron tablets. I was often in low mood, I never had diarrhoea, I think this was why no one including me thought about coeliac disease. I was always very thin and pale and weighed 6 stone, people asked if I was anorexic.

In 1998, I had an endoscopy procedure as I was regularly sick for no apparent reason, I was diagnosed with gastritis. I was prescribed Omeprazole for gastroesophageal reflux.

Five years later due to over 20 years of being anaemic and being in low mood my GP suspected coeliac disease: I had the antibody test and results showed I did indeed have coeliac disease. I was referred for an endoscopy again. However a few days after this referral I received a phone call from the gastroenterologist to say that my endoscopy procedure in 1998 showed evidence of coeliac disease and I would not need another procedure. He said to proceed with a gluten free diet.

But she is now in much better health…

Since then I am now normal weight, I have yearly blood tests that a coeliac requires. Three years ago I was prescribed regular vitamin D. A year ago It was discovered due to regular blood tests that I had low Vitamin B12 levels. I now have Vitamin B12 injections every three months.

Jackie’s challenges with a gluten free diet

If I accidentally ‘get glutened’ usually when eating out, I am sick within 20 minutes. I then have uncontrollable diarrhoea which is very inconvenient especially if I am on holiday which has happened. Therefore I have to be extremely careful not to accidentally eat gluten and I ask to speak to the chef of the establishment. I am often finding that it is easier to be vegetarian or vegan sometimes.

My husband and I went to Alaska on a package holiday for two weeks. The experience was amazing, the scenery fantastic. However sometimes as you can imagine we were often in the middle of nowhere. I was at the mercy of the hotel for my diet, even though I informed the tour company that I was a coeliac. There were not always shops/supermarkets nearby. Sometimes I just had salad to eat, wheat flour seemed to be in most things even in breakfast ‘fried potatoe’.

The hardest thing about adjusting to my gluten free diet was not being to have Birthday or wedding cake at functions. I made my daughters wedding cake gluten free just so I could have some!

Jackie’s top tips

A really good bit of advice is always read ingredients on packaging & refer to a good established gluten free guide. Ingredients can change regularly.

One of my favourite gluten free recipes is the chicken onion & mushroom pie, Incased in pastry made with ‘Glutafin Multipurpose White Mix’ and topped with potatoes cubes and cheese. The chicken & mushroom is set in a lovely sauce made with cornflour, milk & chicken stock.

When you make pastry always chill in fridge for 30 minutes before using, roll out between two pieces of grease proof paper.

Eat plenty of fruit and vegetables, have a high fibre diet, I also have a small glass of prune juice every day.

Take something gluten free with you if you can in case you find yourself somewhere that you cannot obtain gluten free food.

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