Coeliac Disease – Road to Diagnosis

11 06 2011

So for those who haven’t heard, I have been officially diagnosed with coeliac disease. My gluten free life begins now. (Actually it began 5 weeks ago but I’m still a little lax at keeping up-to-date with the blog).

The diagnosis was not surprising as my Mum was diagnosed with coeliac about 4 years ago. Her road to diagnosis was much longer. Her symptoms began in her late 40s and included diarrhea, vomiting, anemia and loss of bone density. At the time little was known about coeliac disease so she was told it was probably menopausal and given supplements. When she was finally diagnosed correctly and began her gluten free diet she said she felt better than she had for the last 10 years. That’s a long time to feel sick.

Soon after my Mum’s diagnosis her sister was also diagnosed. They both agree that their mother, now deceased, was probably also coeliac as she struggled with conditions like osteoperosis and thyroid disease. Subsequently two of my older male cousins on that side of the family also began eating gluten free and felt much better for it.

Given the strong family history of this genetic disease, I had a blood test to see if I might also have the disease. I was pregnant with my first child at the time and I was having a number of blood tests anyway so I tacked it on the list and got it done. Unfortunatley the results were too confusing for my obstetrician at the time (I can’t really blame her for not being totally up-to-date on coeliac serology). She told me that as only one of the three tests was out of range, I should leave it until any digestive symptoms manifested.

Fast forward four years and two babies later, I found myself requesting another blood test. Not for digestive symptoms but for fatigue. I’m always tired and never able to get enough sleep. And while 2 children who get me up in the middle of the night and do not sleep well in the day certainly contribute to this, I felt like it was more than that. I interact with other mothers who do not seem to be as drained as I always feel. So I thought I should get a few things checked like iron levels, vitamin levels, thyroid function, and sure go ahead and recheck those coeliac antibodies too.

The blood test results were a little bit surprising – iron levels were fine, vitamin levels were fine, thyroid function a bit overactive, and coeliac antibody levels super high.

The gastroenterologist said that given the serology and the family history there was little doubt I had coeliac disease. But I went ahead and had the gastroscopy and small bowel biopsy to confirm it. This confirmation is required to be able to join the coeliac society. It’s certainly the most expensive and invasive membership fee I’ve ever had to pay.

So there it is. The day after the gastroscopy I started eating gluten free. And besides having to ask my mother a hundred questions I haven’t found it terribly difficult. I am lucky to live in an age where there are hundreds of gluten free products and substitutes available. The follow up biopsy in 12 months will tell me if my insides are healing. But as the only symptom I have is tiredness it will be difficult to judge if the diet has an impact. In 12 months time I will have weaned my 1 year old, she will hopefully be sleeping better, and my overactive 3 year old will finally be allowed to go to kindy. So gluten free or not I’m sure I’ll feel better next year.




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