Tips for coping with Gluten Ataxia

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Ataxia UK Annual Conference: Gluten-free diet tips for gluten ataxia patients

At the 2021 Ataxia UK Annual Conference, there was an interesting session from Professor Marios Hadjivassiliou and Emma Foster on immune and gluten ataxias. During the Q and A session, Emma Foster, who is a Senior Ataxia Nurse Specialist, covered gluten-free diet tips for patients with gluten ataxia. Please find them below.

Question 1. How difficult is it to maintain a strict gluten free (GF) diet? Do you have any tips on maintaining this diet?

Emma Foster replied: ‘It is a difficult diet to follow. We do really sympathize with patients that it’s not easy. I think that the difficulty in this day and age is that we live with convenience foods as part of our daily consumption, and convenience foods generally have gluten in them because gluten soaks up flavour and makes things taste nice! Manufacturers will hide it in all sorts to make food more tasty. Generally how I would advise patients adopting a GF diet is to take their diet back to scratch. If you think that all your meat, fish, dairy, eggs, fruit and vegetables are all naturally gluten free. You can have as much of that as you want. You can make plenty of great meals just from that as a base. The difficulty comes when we’re looking at the wheat based products, like pasta, breads, cakes and pastries, which often we all quite like to have. You can get brilliant alternatives such as gluten free pasta, flours, thickeners and gluten free breads, but they are still a little bit hit and miss. I think it is about shopping around to find the right ones for you and having them as little extras on top of your staple foods as mentioned.

There is an improvement that I’ve seen in the last few years with how accessible the gluten free products are. Every supermarket you go into now will have a shelf with gluten free products on it, and certainly some of the cheaper supermarkets, will have offers on that you might be able to bulk buy if you find something you like.

I see it as a bit of a process that you’d build on, you become more and more strict as you develop awareness and you build a repertoire of meals that work and you enjoy. Cost-wise, you can follow a gluten free diet cost-effectively, but it’s about maybe looking at how you can batch cook and make larger portions and freeze them, and take it back to basics, rather than being reliant on the specific gluten free products which will be more expensive. It’s important to be aware that a lot of the gluten-free products are often filled full of all sorts of chemicals that you might not want to really be consuming anyway, because they’re trying to find ways to get flavour into the food without using gluten. I wouldn’t necessarily say that they are really that good for you.

We frequently signpost patients to Coeliac UK for information, their resources are excellent. They do some brilliant online resources and send a regular magazine with recipes and offers. They have apps that you can download onto your phone that make supermarket shopping much easier, highlighting the incidentally gluten free products that are out there and don’t have the added free from cost attached to them. They also have an excellent Coeliac UK accredited restaurant database helping you to eat out with confidence. Whilst you may not have Coeliac disease, the diet you follow with gluten sensitivity will be the same.

Whilst you are building confidence in following the diet, it is also important to consider possible cross-contamination within the home. Ensure you use separate toasters/butter pots to others consuming gluten products. Wipe down surfaces/chopping boards/knives with soap and water to clean away any gluten containing crumbs. The strictness of the diet is so important.’

Question 2. Maintaining a gluten free diet can be quite expensive, do you have any advice on keeping the costs down?

Emma Foster replied: ‘I think using the Coeliac UK app will definitely help, as well as shopping around, but it’s hard if you have ataxia and you struggle with your mobility, going around all the different supermarkets and trying to find the bargains and deals. I appreciate it’s quite difficult.

I know Coeliac UK have all sorts of forums to help people, highlighting when offers are on for particular products. It’s about shopping around and going back to scratch. You don’t have to buy the gluten-free products, go to the offers in the supermarket and buy your fruit, vegetables, meat, fish and dairy when it is on offer and use that as your main staple diet.’

[Midori]

Absolutely agree. It's not just wheat with me, but oats, rye and barley too. I already batch cook, and buy Gluten free Fish Fingers and fillets.

I can manage Tempura, as it is mainly Cornflour mixed with a little gluten free flour, and an occasional slice of sourdough from an artisan baker (can't handle the Chorleywood processed bread at all).

I love a pork pie though, so occasionally I will buy a big one and take off the pastry!

I also love haggis, but haven't found a grain free version yet.

Cheers, Midori