I have coeliac disease, and I also work in pathology-so part of my job is assisting with the diagnosis of coeliac in others. Your question actually prompted me to come out of lurking actually!*
I found out after an endoscopy confirmed a positive blood test at the end of 2012. For years I had struggled with anaemia, vitamin D defciency, chronic reflux that couldn’t be controlled with medicaton and constipation with occasional diarrhoea. I never suspected it was caused by gluten. Honestly, I was pretty upset when I found out, especially because it had taken 5 years to get a solid diagnosis. More upsetting was the bone scan I had 2 weeks later that showed my bone density wasn’t very good at all-I had osteopenia, which is a loss of bone density and a precusor to osteoporosis. When your small bowel lining has been damaged to such an extent, it can no longer absorb many essential nutrients, including vitamin D and calcium.
So why did I tell you my story?
If I had figured out it was gluten on my own, and cut it out without getting a diagnosis, I would never have had a bone scan. I would never have started on a monitoring program, or vitamin D/Calcium. I’m fortunate enough to have found out at a young age, when I still have time to lay bone down. My next scan is in Jan 2015, and while I hope so badly that my bones are of normal density, if they are not, at least I can take actions to reduce the risk of osteoporosis.
Secondly, my close family can now found out if they have coeliac disease. This is encouraged among first relatives of a person with coeliac. My sister has come back negative, but seems to have some sort of gluten sensitvity and is now experimenting with a FODMAP diet. My dad is negative. My brother and mum are taking their sweet time, but thats another story.
Thirdly, coeliac disease puts you at an increased chance of other diseases. Cancer is often mentioned, however other autoimmune diseases are also more likely in people with coeliac. Lupus, thyroid diseases, diabetes type 1 and others are just some examples I can think of right now. Now that doctors know that I have coeliac, they are much faster with tests and things to make sure I haven’t developed another autoimmune disorder.
Gluten free has a lot of hype, mythology and most of all, misunderstanding surrounding it. Coeliac disease is very similar to gluten intolerance (both make you feel awful and pretty much the same “cure”), but only coeliac disease can have serious side effects. While you intend to eat GF forever, regardless of any diagnosis, a diagnosis will allow you to have any further tests which may be required. I would suggest Googling the local coeliac organisation in your area for the best info regarding the disease, and help you form an informed decision that’s best for you.
Good luck with it all, and I wish you all the best, whatever you choose to do!
*apologies for my essay