Gluten Free Guerrillas
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Hello everyone, my name is Nicola, im 23 and have been diagnosed with coeliac disease for 9 years.

It was a big surprise to us as the only symptom I had was anemia, but when we went to see the consultant he was very surprised at how well I was because my tag levels were off the scale (they stopped counting at 250). He had been expecting me to be really struggling and constantly off school. He got me booked in for an ebdoscopy with biopsies very confident it would show very badly damaged villi, but it didn't. My endoscopy looked fine and the biopsies came back totally fine.

They thought it may of been a mix up at the lab, or perhaps the samples they had taken were from the wrong place, but they couldn't really explain it, so they repeated my bloods again and they came back over the scale again. I was still feeling well and in no immediate danger so they decided to wait and see what happened. Over the course of about 10 months they took blood tests at intervals and every test had the same high result so it was decided there was no chance it was a fluke and they diagnosed me as coeliac 2 weeks before my 15th birthday .

After we changed my diet over my blood tests improved very quickly and we were convinced we had done the right thing. If I get accidentally glutened now I definitely know about it, my lips swell, I get a massive headache and my whole body hurts. I havent once eaten it deliberately since I was diagnosed but I have been in situations where people havent been as careful as they should (sometimes even the hospital kitchen has messed up when Ive been an inpatient) and I was affected by the product recalls last year with the contaminated food. Other than that my coeliac is well under control .

As well as coeliac disease I have Crohns disease, asthma , too much calcium in my blood, osteopenia , fibromyalgia and a fast heart beat which is currently under investigation. Because of the combination of conditions it can be tricky to get a good variety in my diet but we are always on the look out for new things. I have to try and keep fiber at a minimum and not have too much calcium which can be tricky on a gluten free diet but we are savvy and do a lot of home cooking.

2 Replies

Glad to hear your coeliac disease is under control. Good luck with the heart beat investigation.

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As I understand it diagnosis of the most badly atrophied villi occurs with age. I'd been ill for about 40 years before I was finally diagnosed so it wasn't a surprise that the biopsy was in the upper Marsh category.

Swollen lips sound more like an allergy to wheat maybe? So there would be an improvement in cutting that out.

I thought tag levels were Triglycerides.


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