The Gluten Free Diet
Let’s be honest, the Gluten Free Diet (GF diet) is not just a diet, it is a way of life, and for us with Gluten Ataxia (GA) it is a matter of now and our future health and life. For some a GF diet is adopted out of desperation, for others it is because of a positive diagnosis following tests. These tests are usually carried out at The Sheffield Hallamshire Hospital ataxia clinic which is run by Professor Hadjivassiliou and his team.
A GF diet is a way of life! It needs to be followed strictly 100% of the time. Gluten Free food that has the CROSSED GRAIN symbol, is by legal requirement in the UK to have <20 ppm (less than 20 parts per million rule). Previously Research Papers that have come to this level of gluten in food have only taken into account Coeliac Disease and for Coeliacs this usually meets their requirements, but is this applicable to those of us with GA? The answer is – we don’t know, we are all different, some of us can tolerate these levels of gluten but for some of us not, and it needs to be lower. Canada has <5ppm so they are a lot stricter.
Where does dairy fit into all of this? It is widely thought that gluten and dairy are among the most inflammatory foods in our modern-day diet. Some Coeliacs adopt ‘dairy free’ into their regime temporarily to help reverse the damage that eating gluten may have caused to the digestive system. Ask your doctor for advice if you think this has effected you.
It cannot be underestimated how much a GF diet messes up your social life, family celebrations, get togethers with friends and life in general! This will be having an impact on our mental health as well as living with ataxia!
Then there is the very real problem of ‘cross contamination’ which we are all familiar with and unless you have a ‘true’ GF kitchen then contamination is possible. So this will affect the whole family!
Being ‘gluttoned’ is the word we use when we have eaten gluten accidently and it has negative consequences. Digestion, dizziness and balance is worse, walking and speech too, fatigue, brain fog and co-ordination can all be affected. We are all different and any of these or more symptoms can affect us when ‘gluttoned’.
The human body is dynamic and ever changing so what we eat today has no negative effect, but on another day in different circumstances it might? No one has said a GF diet is easy, it is complicated!
Traditional versus True Gluten Free
A traditional GF diet eliminates wheat, barley and rye, but some will be affected by GF oats too. The TG6 blood test for antibodies to gluten involve only wheat, barley and rye so where does this leave us with a sensitivity to GF oats as well? It will be worth considering eliminating these too, oats are in many replacement GF foods so read the labels carefully.
Do GF oats keep the TG6 antibodies high and are they effecting the ataxia symptoms too in some of us? We don’t know, it’s complicated!
If you find that a Traditional GF diet is not working for you then consider eliminating all grains and see how you feel. This is a very restrictive diet and you will need to enlist the help of a knowledgeable dietitian for this.
Then there is the question of Ultra Processed Food (UPF). This is having a lot of publicity in the UK within the health-conscious population. Put simply when shopping, do not buy any ready meals or food that is processed at all. It involves a lot of cooking from scratch, planning and a freezer helps significantly. The general rule is – read the label and if the ingredient is not in your kitchen at home, then don’t buy it.
Also while on the subject of processed food, the replacement GF foods down the FREE FROM aisle in supermarkets are usually full of gums, fillers and emulsifiers to make these foods similar to gluten containing foods. Some people will be adversely effected by these chemicals. These foods can be UPF’s!
Again, we are all different and these ‘further steps’ will not be necessary for those who can tell by their symptoms and test results that a Traditional GF diet is working for them.
The ultimate aim for us is to stabilize or even reverse symptoms of GA!
So in summary – everybody who has ataxia without a diagnosis of what type of ataxia it is, can ask their GP or neurologist for a TG6 test and if positive can ask for a referral to the Sheffield Hospital.
Unfortunately, this is proving rather difficult at the moment, so we are hoping that this process will be simplified soon. In the meantime, there are 3 routes and choices for you to follow, taking into account the length of time between appointments. We advise that everyone carries out their own research before a decision is made.
- Try a 100% Gluten Free diet and wait to see if the symptoms of your ataxia improve. This could take several months or in some cases up to 1 year. So this is self-diagnosis. Generally you will know sooner if a GF diet is beneficial.
- Try a 100% Gluten Free diet and go back to eating gluten before the tests. So you self-diagnose but take the ‘Gluten Challenge’ after discussing this with your neurologist and prior to having testing.
- Keep on your normal diet, including gluten containing foods, and wait for a referral and the tests for a diagnosis.
Please take into account that TIMING IS CRITICAL to diagnosis of Gluten Ataxia. Some damage to the cerebellum may not be reversible.
Also please be aware that the TG2 blood test for Coeliac Disease will NOT pick up Gluten Ataxia so always note what tests you have had and question if it is appropriate.
It is your body and your health, and it is your right to take whatever path you choose to look after yourself!
A TRUE Gluten Free Diet: ( Ref Dr Peter Osborne)
- Eliminates all grains based on recent findings. See list below.
- Looks at the potential for dairy to be eliminated from the diet.
- Considers genetically modified and ultra processed foods.
- Focuses on restoring health.
List of the common glutens in different grains:
- WHEAT gliadin
- BARLEY hordein
- RYE secalinin
- OATS avenin
- MILLET panicin
- CORN zien
- RICE orzenin
- SORGHUM kafirin
The list is quite overwhelming! And there are more grains! If you do find you cannot get the antibodies numbers down in your tests, then you may want to consider eliminating oats, millet, corn, rice and sorghum etc, so a grain free diet as well. But speak to your doctor first. There are several people with GA on social media who avoid corn and rice which are found frequently in GF foods. Or simply you may want to try a grain free diet and see how you feel.
The problem is some of us with GA seem to develop hypersensitivity, and our bodies immune systems will be recognising some of these grains as mimicking gluten and switching on to autoimmune! Another complexity!
If you are new to a GFD then the Coeliac UK APP is helpful while out shopping. Just be aware that, in my experience, coeliacs seem to be able to tolerate a slightly higher level of gluten and so can safely consume GLUTEN FREE foods.
Disclaimer
Articles and information that are written and included on the “The Gluten Effect” website are written by people who are not medically trained. These articles and information are based on the author’s own life experience. We always recommend that users of this website conduct their own research and speak with their doctors before making any dietary changes.