Ellen’s coeliac story

Since I was 18 I have had difficulties with ‘irritable bowel syndrome’, trying to lose weight and regular mild depressions. I also had a track record of lingering and chronic infections, inflammations and tendonitis.

Due to food allergies I already had realised that wheat was not good for me and used a lot of spelt. That improved the situation a little bit but I was gradually putting on weight, constantly had chronic viral infections and tendonitis in my wrists and bad mood swings.

My brother in the meantime developed bad Crohn’s disease, so helping him and my mother did become more important. I thought that my problems were small in comparison to his, so best not complain. Also, my mum having had nurse training in the seventies also reacted very strongly to me even suggesting I might be coeliac as she associated it with very sick and underdeveloped babies. So that for a while stopped me following up that information.

Giving up university, training in hotels in Germany, sorting out my life, moving to London and finding work there also took priority so health problems were pretty much ignored for quite a long while.  I mean, I did not feel ill constantly but there was always something that was not quite right. I thought I was unable to lose weight and was more on the slow, sluggish side and that was that.

Then Spring 2007 I developed a very itchy skin rash on my knees.  After a while I went to see my GP (who knew about my ‘irritable bowel syndrome’ and the mild depressions) who suggested trying the various creams, which of course all did not help.  It then spread to my elbows, knuckles and nose, so anywhere where there was not much skin over a bone/joint.  I realised that there was a connection between food/drink and the condition but was unable to pinpoint it. So three months after this rash starting I got on the internet again and started researching Coeliac disease and trying to find my skin condition and on a page about Coeliacs with Dermatitis Herpetiformis and finally struck gold. That was me!!! That was exactly the symptoms I was having.  I proceeded to the information about gluten intolerance and felt great. Finally an answer.

So the next day I went to my GP and said that I suspected I was Coeliac. She just went fine, here’s the blood test form, see you in a few weeks’ time to discuss the result.  I immediately cut out gluten (or thought so) but there was an instant improvement.  A few weeks later I was back to discuss the results which showed that I had the ‘unspecific’ antibodies and that normally she would not confirm the diagnosis but with me immediately improving on reducing the gluten and the skin condition she told me I am Coeliac.

After the initial delight at finally knowing what was wrong with me came a tough time of figuring out what I could eat and where when away from home, finding the books (knowledge is power, do not ever let anybody take that away from you) and educating partner, family, friends and work.  I guess I am lucky to have such a supportive partner who is proactive on the topic, rather than just doing what I tell him to, or even worse, leaving because the going has got to tough.

However, the first year and a half was very much an uphill struggle.  I felt very much alone. The GP was quite blasé about it, my gastroenterologist was hard to get hold of and on matters regarding the DH her comment was ‘Oh, do you currently have it, I have never seen it in real life, only on pictures…’

By the time I finally got an appointment with the dietician I was already self-sufficient and did not need her help any more.

By now I would say I am a coping well, being able to bake, cook and go out safely.
I still get upset at times when calling up restaurants to find out if I can eat there and they are being horrible over the phone, but that fortunately is in a minority these days and people usually are very helpful and try to accommodate as much as possible. (Ok, a friends wedding where I had to miss out on the wedding cake, that was tough, but hey, I had custard cream biscuits instead…)

I have just a few items left that I still miss, like German Pretzels (the big ones) but most of those things, once I was able to have them once, it’s fine.

In total I would say my life has really improved since my self diagnose. I am finally able to lose weight, having completed my first half marathon, signed up for the next one and am planning to run a marathon in autumn next year. I probably would be fit enough earlier but just want enough time to sort out the food and drink situation required for a marathon in peace and comfort.

I feel alive again, am far less prone to depressions, am much healthier and am in general a happy, content person who since last year October is officially completely gluten free. The nicest blood results ever. (Also I am less afraid of becoming pregnant, now that I know what needs to be considered and provided for, as I hope to be able to have babies in a few years time).

Certainly there is something to be said for the old Chinese proverb ‘one illness, long life, no illness, short life’.


~ by theblackfarmer on May 8, 2009.

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