My Diagnosis Story...

26 Years to be diagnosed!


I have always had stomach issues since about the age of 6, with being very thin (compared to my brother and parents), and rabbit like stools, plus a prolapse.  Initially, I  was under the care of various paediatricians, who never came up with a diagnosis, although I was rushed into hospital for week-long tests when one paediatrician suspected cystic fibrosis (confirmed by a sweat test).

A week later, I was released from hospital with still no diagnosis and discharged from the hospital at the age of 12. 10 Years later, I came out in a hot itchy rash all over my body, which could not be diagnosed by my GP even though samples were sent off to the hospital. This faded after 6 months and was put down to stress (I had just left my job to take up a full time voluntary job).

Finally, a diagnosis…

At the age of 32 (2000) I was eventually diagnosed by my GP (and confirmed by endoscopy) after I became inordinately tired at work (where I was falling asleep at my desk even though I cut down my hours to 6 hours a day, 3 days a week). The gastroenterologist took one look at me and said that I was malnourished and the prolapse should have been picked up as a possible symptom of coeliac disease at the time. My rash was probably Dermatitis Herpetiformis and that would explain why no skin samples etc had provided the means to a diagnosis. He said that “6 Months on a gluten free diet” should see a marked improvement.

I was unable to work at this stage and claimed on insurance to cover my loss of wages, but unfortunately due to the comments by the gastroenterologist and a second endoscopy showing “some regeneration” of my villi, they refused to pay out beyond the initial 6 months.

Personally, the diagnosis came as a mixture of relief and disappointment. I had to cope with an increase in my weight of 50% in 6 months, plus now absorbing nutrients meant that I started to suffer from severe IBS. The support of companies such as Glutafin and being able to get some food (bread and flour particularly) on prescription was a godsend in helping me to make informed choices over what to eat, but it was some 5 years post diagnosis before I was fit enough to return to work.

Going back to work…

Returning to the workplace was an eye-opener too, no longer being able to partake in the cakes other people in the office inevitably brought in on their birthday, or buffets laid on by clients for “breakfast meetings” or working lunches; continued to make both myself and the clients feel uncomfortable, as caterers able to provide gluten free options (particularly on short notice) continue to be few and far between (or else restricted to a bit of salad). I have also found that I am less likely to be invited out for meals etc as people continue to worry that they will “poison” me, or struggle to find an establishment which caters for gluten free. Even going out for the day meant I have to take a packed lunch in case – gone are the days when I could just pop into a cafe or chippy to grab something to eat with a coffee if I stayed out longer than expected.

My top tips for newly diagnosed…

  1. Don’t panic – there is plenty of support and help out there. More places are becoming aware of coeliacs and cross-contamination; but ensure that you book beforehand and check with them that they understand what a gluten free diet is and dangers of cross-contamination.
  2. Be prepared – if you are going out for the day, take a snack box (or lunch box) just in case you cannot find anything suitable, or are away longer than anticipated.
  3. Find time to laugh at your efforts. Gluten free baking is no more complex than ordinary baking – things do go wrong sometimes (especially if you try your hand at pastry) – accept it and take time to laugh at what goes wrong rather than getting stressed about it.
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