Glutey tales: Barbara's story

Coeliac disease has been around a looooong time, it's not a new disease. There are even reports of coeliac disease dating back to Roman times. Yup, 2000 years ago.

Even so, we're still I believe very much at the beginnings of our understanding of coeliac disease, and it's lesser medically-accepted buddy gluten intolerance.

I've been on a gluten-free diet for about 15 years now. And to start with it was really hard to find gluten-free food. My sister and I (also a glutey) spent endless hours trying to bake bread and make treats with varying results. 

I can still remember the two places in the Waikato where we could find gluten-free food. 

1. Bin Inn in Te Awamutu (still a fantastic place to shop by the way)

2. Cafe Strata - at the time based in Casabella Lane, Hamilton (now in the process of moving to Waihi Beach). When mum and I discovered Cafe Strata we were SOOOO excited. And since we were total newbies to gluten-free, mum asked them about their gluten-free menu commenting that we had an eating disorder so needed to eat gluten-free (haha!)

There was at the time very little knowledge of what gluten-free is, or what coeliac disease was about.

Recently I talked to a group of long-term gluteys about their experiences. I'm blown away by how similar and yet how different their stories are. Over the next few weeks I'll share their stories. I'd love to hear your story - post a comment below if you like or drop me an email (hello@gluteygirl.com)

For today, here's Barbara's story, which highlights to me the impact coeliac disease has on fertility and child birth rate.

Barbara's Story

Diagnosis:

In 1992, I was 39 and I went to my doctor, again! He said if I hadn’t got pregnant by now it wasn’t going to happen and I needed to move on. He said the ongoing diarrhoea could be a problem with wheat.  I said I would go without for a month and see if I felt better. I didn’t feel any better, but later found out I was pregnant!

I struggled through the pregnancy with low body weight, migraines and very tired. I did nothing to get ready for the baby as I was too tired so my mother jumped in there.  (I had told her a baby was not going to happen, so when I found out, I bought white wool and a baby pattern and gave it to her for her birthday, she was puzzled till she clicked and then it was all screams and excitement!) My baby was born three weeks early and only 1.8 kg. We had to stay in hospital for three weeks till she got to 2 kg. I had a lot of bleeding, very low iron and trouble giving enough milk. But we went home and I struggled on, till I couldn’t even walk up a flight of stairs without stopping halfway. 18 months later, I went back to the doctor and after some false starts, when showing her my psoriasis she was shocked at how thin my legs were and sent me off to a specialist. I got a positive biopsy, but they didn’t tell us it cured your infertility and next minute I was pregnant again!  

This time I was on a gluten free diet and healthy and the baby was 3.4 k, (three weeks late). It was a totally different experience. I tell people who feel sorry for me on the diet, that my baby on a diet with bread was only 1.8 kg and gluten free my baby was 3.4 kg and that is the difference in the quality of your life. If someone had said to me that you can’t have a baby because you’re eating bread, I would have thought they were mad. In hindsight, I have always had it, even as a child I had pea stick legs, pale and tired. I was good at sports but could never run more than 20 minutes. When I was in my early thirties I lost about 4 or 5 kgs and after that I was really just in survival mode. This is the most common age for coeliacs to be diagnosed.

Food availability

I knew nothing about a gluten free diet in the early nineties, I saw a dietitian as part of my diagnosis but learnt a lot from the internet and books I found in alternative bookstores. My relatives knew nothing and the food at family get together’s was a mission, so I just ate what I took.  

There was a very limited range in the health food shops. The bread was terrible, so I ate more rice. Going away for the day meant yoghurt and hot chips for lunch.  I lived in a small town so the options were very limited. I bought a Kenwood mixer and made my own everything; bread, muffins cakes, fish batter, even doughnuts. It even has a grain mill, which I used to make brown rice and pea flours. I have a collection of about 20 gluten free cookbooks. It had a sausage mill and I even made sausages. My boy was put on a gluten-free diet for a while so that was the incentive to do a lot of things I would have gone without. We had birthday parties for him, all gluten free. You could buy an ice cream birthday cake. Other kid’s parties would have nothing for him to eat, so I sent him with a plate of his favourite treat. When eating out you had meat and 3 veg; steak and chips, bar-b-ques were good, lamb chop and salad.

Any advice for newly diagnosed coeliacs?

Hang in there, you can’t just remove the toxin, you have to heal and healing takes time and energy. You will wake up in the morning and feel good! Other medical conditions may improve, I have never had a migraine since I have been on the diet and my psoriasis is now very mild. This is probably because I am now healthy because my stomach is functioning, rather than the diet itself. Also your brain will improve, complicated things I used to struggle with became much easier. If you have no bread, learn to whip up some pikelets or pancakes. They are quick and easy and if you’re going away just take the mix with you in a zip lock bag for the number of days you need and make it up at your destination. Also you can make cake in a cup, when there is no dessert for you. I have met some older coeliac’s who have been diagnosed late in life and they are bitter about most of their life having been a struggle and the doctors failure to pick it up. But that is ancient history and you have to move on and enjoy what you have now, good health!