Our Experience Of Going Gluten Free

This post has been encouraged by several people who think they may benefit from going gluten free, but are overwhelmed by the idea of doing it.

I am planning another post about the technicalities of what gluten does in our bodies, this post is going to focus on how we changed my daughter’s, and later, my diet.

Why Gluten Free?

Our journey into the world of the gluten free diet began after a test, via our nutritionist, in Spring 2012 revealed my daughter was gluten intolerant.  In some ways this was a relief.  She has had health problems for years, and numerous doctors, including several gastroenterologists, had failed to help her.  She had had a blood test for coeliac disease in 2010, but this was negative, and there was no mention of gluten intolerance being possible if it was not coeliac disease.  I understand that non-coeliac gluten intolerance/sensitivity is only now being accepted by medical professionals.

Food Shopping

I was still very weak in spring 2012, so the details of how I coped with my daughter becoming gluten free are hazy.  I had only just started attempting to do weekly on line grocery shopping, and found it incredibly draining.  I was given a list from our nutrtionist of all the foods that may contain gluten, there is a similar list available as a download from the coeliac uk webpage . The obvious foods like bread and pasta didn’t phase me, I knew I could buy gluten free equivalents.  It was other stuff that I found hard.  For example many, many processed foods contain gluten.  The answer here is to cook your own food from scratch, but I was too ill to do that.  For the first few weeks, as I was shopping, every food label had to be checked .  I soon got to know which products were “safe” and which to delete from my weekly shop.  On-line shopping made things slightly easier, because I was able to look at labels from the comfort of my sofa, and do a search for “gluten free …….” and see what came up. Here are some examples of foods I was shocked to find contained gluten:

  • stock cubes (don’t panic there are now several G.F. brands around)
  • Soy sauce ( Use Tamari sauce instead)
  • Oven Chips* – some are coated in wheat flour.  It seems to be the cheaper ones that don’t contain gluten, but you need to check the packets
  • Crisps* – this is the most random one.  Some crisps contain gluten, some don’t.  Sometimes different flavours in the same range contain gluten.  Again it’s a case of checking every packet.
  • Ice cream* – this was on the list we were given, but in my experience most ice-cream I buy is gluten free.  Of course ice cream cones contain gluten. You still need to check each pack to be sure.
  • Sausages and burgers – you can buy gluten free ones, but they tend to be expensive.
  • cooking sauces e.g. sauces for chicken, pasta etc.  There are some gluten free brands available, but they tend to be more expensive.  Seeds of Change make some good sauces.

Other People’s cooking

In addition, at this time we were still reliant on other people cooking meals for us.  My friends rose to the challenge of cooking gluten free meals, but I’m sure there were occasions where meals inadvertently contained a small amount of gluten (e.g. from stock cubes).  Despite being told we needed to eliminate gluten 100% I just accepted we were doing the best we could, and was honest with our nutritionist about our progress. My mum has struggled with remembering my daughter needs gluten free food, but now, after a year and a few mistakes along the way, she seems to have  a good grasp and tries really hard to cater for us.

Packed Lunches

One of the hardest things to change was packed lunches.  My husband was (and still is) making all the packed lunches and I found it incredibly difficult to find gluten free lunches that didn’t require lots of preparation, that he was willing to prepare.  Our nutritionist sent us a list of ideas for “easy” packed lunches, but these were still too much for him to cope with, and I was incapable of adding extra cooking activity into my day.  Fortunately I found some gluten free falafels and they became the staple gluten free lunch when we didn’t have other ideas;  my daughter still has them regularly in her lunch box. This year, with my improving health my daughter and I have written a list of ideas for her lunches to encourage variation.  We have found the Lunchbox Doctor website an excellent source of ideas, although it is not specifically gluten free.

School lunches

I met with the school cook and found that the school could provide gluten free lunches on some, but not all days.  When we first began this gluten free journey the school had an excellent cook and she told me which meals she could adapt and which she couldn’t.  Since the school could not supply gluten free sausages, I arranged to supply sausages for her to cook.  This meant my daughter was able to have school lunches on more days, and took the pressure of my husband to produce packed lunches.  Unfortunately that cook left and the new one produced food that was so unappealing my children gradually refused to eat any school meals  (the school is going to change catering suppliers to improve the situation).

Eating Out

Occasionally we eat out at restaurants.  We haven’t found this too much of a problem, the key is to select a restaurant that either has gluten free options, or cooks real food.   A lot of the chain italian/pizza restaurants now offer gluten free alternatives.  If we go to our local indian restaurant my daughter orders tandoori chicken and rice.  Carvery restaurants are a good option, because nearly everything apart from the stuffing and yorkshire pudding is gluten free, so there is plenty to choose from.  We have always found restaurant staff happy to adapt food.  We did once go to a restaurant where there were no gluten free options that my daughter liked.  The chef happily made her an omelette even though this was not on the menu.  It can help to phone up before hand and discuss what gluten free options can be provided.

Home Baking

My daughter loves baking.  She was pleased to discover that almost any baking recipe can be made gluten free by substituting gluten free flour for ordinary flour.  You also need to check that your baking powder is gluten free; some brands do contain gluten.

My Experience

My experience of eating gluten free food began gradually.  Although my foods to eat less of list included grains, I had not had a test which showed I reacted to gluten of wheat.  My appointments with my nutritionist initially had to be very short, because I would tire quickly and my brain fog would make continuing the appointment impossible.  Sometimes we would break the appointment into 2 sections so I could go and rest in the middle.  Perhaps if I had been more capable we would have discussed gluten in more detail – perhaps we did and I don’t remember (the joys of brain fog!). I began to have gluten free bread and pasta, but I didn’t totally avoid gluten, and on the occasions where I did eat gluten I didn’t notice any digestive problems.  I can’t remember when I decided to get serious about completely avoiding gluten myself, but I think it was spring 2013. As my health has improved my ability and commitment to change my diet has increased.  At the moment I am gluten free, because I am wheat, oat, rye, barley free.  I am focussing on eating more vegetables and avoiding grains (except small portions of rice and quinoa).  I have found if I pile my plate high with vegetables I do not miss the grains. My reasons for avoiding gluten are:

  1. I was recommended to avoid all the grains that contain gluten by my nutritionist
  2. Because of my daughter’s intolerance I have read about gluten sensitivity and the wide range of symptoms it can cause, many of which are present in CFS/ME (more detail to come in a separate post)
  3. To aid my recovery it makes sense I am trying to eat for optimal nutrition – maximum benefit from minimal digestive effort.  The more I read about grains, the more I realise that they put a stain on our digestive system, and for some people are harmful.

Gluten free does not mean healthy

Many of the gluten free foods in the “free from” aisles at the supermarket are gluten free equivalents of unhealthy, processed foods.  Gluten free biscuits and cakes will still be full of sugar and unhealthy fats.  They should not be consumed regularly if you are trying to improve your health.  However, I have found them useful when we are invited to social gatherings where everyone else is eating cake, and my daughter would feel deprived if she didn’t have gluten free treats.


I hope our experience reassures anyone thinking of becoming gluten free that it’s possible to do.  The initial change takes some effort, but once you have made the change you get into a routine and it becomes much easier.


* if you’re trying to recover from ME I would advise minimising/avoiding processed foods like crisps oven chips and ice-cream.

One response to “Our Experience Of Going Gluten Free

  1. Pingback: Dairy Difficulties | Eat 4 ME

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