A gluten free diet is one which avoids any products made with wheat, barley or rye. Often people follow a gluten free diet because they have celiac disease. Celiac disease is an autoimmune condition caused by an adverse reaction to gluten. The only way to manage celiac disease is a gluten free diet.
What other reasons are there for going gluten free?
Other people follow a gluten free diet because they believe it is healthier. There is no evidence that this is true. In fact a gluten free diet can lack fibre and essential nutrients. It is probably better to adopt a diet that is balanced and includes a variety of foods, than to eliminate gluten.
Some people experience non celiac gluten sensitivity. They experience symptoms found in celiac disease, such a brain fog, abdominal pain, joint pain and headaches. However they do not test positive for celiac disease.
The case for a gluten free diet for autism is based on two theories. The opioid excess theory, which says that excess levels of peptides from casein and gluten are not broken down completely. These peptides may be biologically active and may cross into the brain. They then interfere with neurotransmission causing altered or disrupted activity.
The second theory is altered enzyme activity due to problems with the liver. Leading to gastrointestinal malabsorption which can have an impact on the central nervous system. There is very little evidence (small studies and anecdotal only) to support these theories, so the idea of removing gluten because of autism is controversial and I wouldn’t recommend it without advice from a doctor.
As for going gluten free for chronic fatigue syndrome. I can’t find any clear evidence, but anacdotally people report experiencing a reduction in their symptoms from adapting a gluten free diet. Having done a web search I find information relating to gluten causing inflammation and leaky gut. There don’t seem to be any studies or clear evidence to support this. Regardless I’m willing to listen to the experiences of CFS sufferers.
Why have I gone gluten free?
I’ve tried many approaches in my quest to be healthy, and well regulated. Including juicing diet, supplements, graded exercise, pacing and ignoring it and trying to carry on regardless! So I’m basically at the point where I will try almost anything if it has even a small possibility of helping.
Initially I attempted the fodmap diet. This diet is recommended by my local CFS services. After one day of trying to feed three children and myself on this incredibly restrictive diet I decided to take smaller steps. Mr Purple and I had a chat and we decided that cutting out gluten would be a reasonable starting point. That was four weeks ago.
How did I go gluten free?
I am lucky enough to have a friend who is very knowledgable (you know who you are, and thank you for all your support with this) about gluten free diets. On my first day on this diet I met with her and she gave me information sheets from Celiac UK. These listed exactly which foods I need to avoid, and which I can eat, so I stuck that to my fridge.
This inspired a kitchen clear. I knew it would be really stressful having to read labels every time I wanted to make a meal. So I cleared all of the products containing gluten in our kitchen into one cupboard. Then I threw out any products that I would need to replace with gluten free equivalents when cooking for the family, such as flour and pasta.
With my kitchen sorted I know I can use anything that isn’t in the gluten cupboard. Which makes eating at home super easy. Next I visited a supermarket and stocked up on gluten free pasta, flour and bread.
The other problem area I’ve encountered so far is eating out. The standard for offering gluten free options varies enormously. Some places offer no gluten free options beyond what is naturally gluten free on their menu. Others offer gluten free options but warn of cross contamination in the kitchen where the food is prepared. Finally the winners of my eating out experiments offer separate gluten free menus with no danger of cross contamination.
I’ve found it useful to research ahead of eating out and finding a place in the latter category to make things straightforward and easy.
What have been the effects of going gluten free?
Within a few days of going gluten free I noticed an improvement in my CFS symptoms. Particularly the digestive issues I have suffered with since childhood. The most noticeable effect is a reduction in nausea and abdominal cramps. After a lifetime of these symptoms it is remarkable to finish a meal and not feel uncomfortable and sick.
My energy levels have also improved. Prior to starting the diet I was basically exhausted 90% of the time. Since starting the diet I find I have energy throughout most days. Only feeling fatigued from late afternoon onwards. This is significant, and has enabled me to participate in more activities with my family, which is brilliant!
From an autism point of view. Initially I experienced more meltdowns when going gluten free. When I researched this I discovered that initially giving up gluten can cause irritability and mood swings. This would explain the weekend of anxiety and meltdowns I experienced after two weeks on the diet. Additionally I found that the first few weeks of going gluten free I was really hungry, all the time, causing some weight gain. This triggered some old eating disorder related anxieties.
As I mentioned my digestive issues have improved. Some theories would connect these issues to my autism, so from that standpoint there is improvement. Whether I will see improvements in any other areas remains to be seen, it’s early days and I will certainly report back on this later.
Will I be continuing the gluten free diet?
It is recommended that a gluten free diet is followed for three months. This should give ample time to see any benefits. So I will be sticking with it for at least that long. At that point I will assess the situation and whether I am consistently seeing improvement. Then I’ll make a decision about my long term plan.