I have a friend. A good friend, a lovely friend.

But I feel she doesn’t respect my way of eating.

Last night we went out for dinner with friends, to a pizza place. At the end of the evening I declared that the gluten free pizza was the worst I had had in a long time (It was truly like cardboard!).
Now to that comment, my friend, she could have said ‘that sucks’ or ‘that must be frustrating’ or ‘shame, our wheat one was was really nice’ or she could have just nodded and said …… nothing.

But my friend, she said this: ‘You should have eaten the other one then.’

I felt upset, like all the other times she says things like that.

But I smiled. I smiled and said ‘I couldn’t, it wouldn’t be worth it’ to which she asked directly, ‘Are you a coeliac?’.

I mumbled no, but that doesn’t mean I don’t suffer, and then trailed off because she wasn’t listening.

The truth is, I don’t know if I am a coeliac or not, because I have not had the full range of tests. Sure, I’ve had the blood test and a colonoscopy, but those do not actually detect coeliac disease. For that, I would need a laparoscopy, a camera from both ends.

My GP, who I respect, discouraged me from having this a while ago when I was still recovering. I understand why.

She said, ‘Tara, do we need a test to tell us you can’t eat gluten? We know how sick you get from eating gluten and grain. We saw it with our own eyes. Do you remember?’

Yes, I remember.

 

I remember that I went from 56kg to 48kg in a matter of months. I remember my ribs and hips stuck out and I felt too weak to walk normal places such as from the car. I remember that I would start to faint if I stood for too long. I remember that just taking my kids to the park was a huge struggle.

I remember that I could not keep any food in and needed to be within a few minutes of a toilet at all- I mean, AT ALL- times.
I remember that I was incredibly anxious if I needed to go to a new, unfamiliar place. For how would I know if there was a toilet, or where it even was? Would I get there in time?

I remember literally running to the toilet each morning, about five times, before I could even leave the house. This was tricky as I had a baby and a toddler at the time.

I remember that my iron levels got so low that I almost needed a blood transfusion. Instead I was subjected to fortnightly injections of iron and B vitamins in my behind, and had so many bruises that I could not sit back on the floor with my young children.

I feel like I lost a year of my life at that time. Not only a year of my own life but that precious year of my children’s life.
I was a shell of a person, a literal skeleton. I also lost my mind. All my marbles- gone.

So, to my friend: No actually, I do not know if I am a coeliac or not.

What I do know is that I now know my health. And my life. And my children’s lives.

A slice of ‘normal’ pizza cannot tempt me away from those precious, precious things that I have fought so hard to regain.

Don’t be confused- I send my friend love, not resentment. That is because we only know what we know. We only know our own experience, our own truth, our own lives. And that’s okay. I don’t need others to know my truths. The important thing is that I know them myself. After many years I now do, on many levels.

It would be nice though. 😉

How do you find other people’s approach to the way that you eat? Let me know in the comments.

Tara X