My Story

Hi I’m Mandy, I was 38 when I was diagnosed with coeliacs after six years of baffling the doctors and at the end actually said he did not know what was wrong with me.

I didn’t have the classic signs of coeliac disease, I didn’t have any stomach problems, I was overweight, my iron levels were fine etc. My symptoms were that my face would swell up and my lips looked like I had a bad case of botox ( I remember someone came up to me and asked if I had my lips done, my best friend was with me and she turned around and said you wouldn’t want lips like hers) and I had them baffled and the doctor eventually said your body is attacking itself and was going to put me on drugs they give transplant patients so things were getting serious.

Thankfully before that aggressive treatment was put in place I was sent to see an immunologist at the RVI at Newcastle.

The consultant asked a lot of questions about family history of illnesses as they do, they took bloods and I went home.

Three days later I received a phone call from the hospital ( the consultant himself ) asking if I could come back and wanted to see me immediatly that day, well you think the worst don’t you? and yes I did.

At the time I lived 30 miles from Newcastle and all the way there I was thinking what have they found?

When I arrived at the hospital the consultant sat me down and said “I know what is wrong with you”, and when he said “you have coeliacs disease”, I thought phew is that it!

I told him I know about coeliacs because my cousin has it and he said “you never told me about your cousin”, I replied “you never asked about cousins”.

Because me and my cousin were close as kids and I knew a little about coeliac disease and I thought “this is going to be easy”.

Well how wrong I was, gluten is in everything and in 2007 there literally nothing in the shops apart from one self in some supermarkets.

I thought “oh my God what am I going to eat”, it was a real eye opener.

My first shopping trip was fun it took three times as longer than usual because I was having to read the ingredients on everything, at that time no allergens were highlighted.

I thought “I’m going to have to get a magnifying glass”, you just don’t realise how small these things are printed until you have to read them.

I did join Coeliac UK and anyone who is newly diagnosed I would recommend it because they are a big help. You get your little book which is a godsend when shopping.

I got my gluten free prescriptions for bread, flour, cakes and biscuits. I remember sitting there with doctor seeing what could have on prescription and him showing me the prices I was thinking I wouldn’t spend this on a normal shop, I was a single mother with three kids, let alone just on myself. Even coming out of the pharmacy with all bags was mad because the looks I got from everyone in there.

The early days were hard and I missed simply just going to get a sandwich, or going out because there was nothing, nobody catered for gluten free and there were the cross-contamination issues.

I remember having to go to the RVI Hospital for an appointment, I had to go by train and sitting in the station waiting to go home afterwards I was starving, I had been at work in the morning since silly o’clock and rushing to get to my appointment meant I hadn’t eaten. I sat thinking what could I grab, there was nothing Gluten Free anywhere, and this was Newcastle, I thought “do you know what? I hate bloody coeliac disease”. Totally in denial I went to Burger King, ordered a Double Whopper and stuffed it in my mouth like a woman possessed, if anyone saw me that day they would think what’s she like? I had sauce around my face the lot and I bloody well enjoyed it.

I did not want to be a coeliac any more even though my health was at stake I would cheat and I would try but not strictly.

A few years later I met Keith, who is my husband now, and we hit it off immediately, I did mention to him that I was coeliac and that eating out was difficult for me, and I would cheat more times than I should.

It was Keith who made me see what damage I was doing to myself, and I have long term (we get on to that in a later blog).

Because the shops were still very sparse for gluten free in 2011 we made a lifesytle decision and set up Gluten Free Food Products Ltd (AKA Mandy’s Gluten Free).

We produced pies, cakes, scones, and other baked products, all naturally gluten free, in our purpose built gluten free kitchen. You have possibly seen us at one of the specialist food fairs, or our regular farmers markets, and the other places we attended over the 6 years we traded.

Sadly ill health made us close our doors in 2018.

Well after a year off and missing the interaction and comeradery of the coeliac community I have decided to write a blog and publish some of my recipes.

I am also planning review gluten free products that are available and new ones that come on the market.

Finally I will share with you our eating out experiences.


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