Monday, 5 May 2014

My Coeliac Diagnosis Story - Update

I finally saw a consultant last week, about my Coeliac diagnosis. I only got the positive blood test in November, so you know, that didn't take long at all! The best part of it was, she didn't see why I needed to see her before getting the biopsy and the biopsy wait times are 3-4 weeks, so if someone had applied common sense somewhere, I could have had that biopsy, and stopped poisoning myself, 4 months ago!!

Ok, there's no point being cross now, we are where we are. And that's with a positive Coeliac diagnosis because, as she explained, even in the extremely tiny likelihood that I get a negative biopsy result, after a positive blood test result (assuming I have continued to eat gluten in the meanwhile), my consultant is diagnosing Coeliac anyway, due to the bloods, symptoms, etc. I have already been referred for a long list of tests and appointments, on the basis of that positive diagnosis. This does beg the question, why do I need a biopsy then?, but that's the NHS for you. They need to tick the boxes.

In addition to the biopsy (which I am really looking forward to, because having a long tube fed down my throat while I'm wide awake, sounds like a fun day out!) I now need to have a bone density scan, because existing issues I have with my hip and lower back might be related to this, and indicate that there might be some bone degeneration already.

Then I need to have more tests, because the consultant thinks I probably have thyroid disease and lactose intolerance also. They are commonly linked to Coeliac disease apparently, and I show symptoms of both.

I need to see a dietician, who will explain the restrictions of my new diet to me, and talk me through the foods that I will be able to get on prescription. I also need to have a flu jab every year, and another one that I can't remember the name of, because by that point, I think I had taken too much in.

My biopsy appointment was made right away, for 28th May. So 4 weeks until the start of my new life. A new life where I will become one of those people that is incredibly annoying to cook for! Eating out will become a mission in planning and our 'play it by ear' and 'pick something up on the way' lifestyle will need to change.

I got a taste of this last weekend when, out with friends, plans changed at the last minute (as they frequently do, where kids are involved) and we ended up in a cafe for lunch. I took the chance to have a look around and see what I'd be able to eat there in a month. Guess what? ...... nothing! Absolutely nothing! And that wasn't me being super paranoid and worrying about cross-contamination, there wasn't even a jacket potato or salad option. We had 5 hungry children between us and were in a forest park, so no chance of going elsewhere. It didn't matter, because obviously I am still eating gluten for the time being, but it did highlight to me how much forethought and planning will need to go in to my new life.

There are many caf├ęs and restaurants that do cater for gluten-free diets of course, and with some organisation, I will still be able to enjoy all the food I do now. The difference will be in the planning. We are not big planners. That will need to change. Either that, or I will need to carry a cool-bag of food around with me at all times! Thank goodness for our caravan and the ability to have self-catered, gluten-free holidays whenever we want them.

On the plus side though, and this far outweighs everything else, In a couple of months time, I should start to feel much, much better. I will no longer be increasing my risk of osteoporosis and various other things that come from a severe lack of nutrients. I should start to recover levels of iron, calcium, vitamin D and goodness knows what else, that I am currently low in. Hopefully, that will mean I no longer feel hung over all the time. I should be able to watch a film without falling asleep, get past breakfast time without wanting to go back to bed and recover some kind of medical capacity.

Just in case I can help someone else recognise the possibility of Coeliac disease in themselves, especially if, like me, their symptoms are not typically 'gastric', here's what I hope will go away, once I am fully gluten-free, and my gut has had chance to heal:

Migraines

Mouth ulcers

Random stomach cramps

Nausea

Anaemia

Extreme tiredness

Aching joints and bones

Dry skin and cracked, bleeding hands and feet

Depression and anxiety

Brittle nails and hair

Really useless immune system - someone sneezes in the same room as me and I am ill

Mood swings and general crankiness (this might be wishful thinking. It may turn out that this is just my personality!)

Lethargy

Difficulty in concentrating / thinking properly

Poor memory

I'm listing these things so that I can look back, in six months to a year's time and hopefully see an improvement. But also because, if my friend Gemma, of Coeliac and Me had never written a great post about the improvement in her Coeliac symptoms, post diagnosis, I would never had recognised them in myself and got tested. If you see yourself in either of our lists of symptoms, please head over to Coeliac UK to read more, and ask your doctor for a blood test! Remember that 1 in 10 people have this disease, so it's not that unlikely that you have it!

For now, I'm off to eat some cake, because if I've got to poison myself for another month, I'm at least going to do it with nice tasting stuff!

Come back in a month, and I'll let you know how the lifestyle change is going.