The Gluten Effect
ABOUT US:
Gluten Ataxia is a rare condition that is little understood by large sections of the medical profession. The situation is further complicated by the fact that there is little accurate information available to sufferers and what is available can be confusing and misleading.
Unlike many of the ataxias, Gluten Ataxia can be stabilised, and in some cases, depending on various considerations and circumstances, the symptoms can even be reversed.
We at “The Gluten Effect” aim to provide information that will encourage sufferers to conduct their own research leading to knowledge and being able to challenge the medical professionals and their indifference to understanding this life changing and disabling condition.
Like many with ataxia it was several years before I had a diagnosis of ‘possibly ataxia’ and several years after this that I realised through self-diagnosis, that it was gluten that was causing the symptoms of my ataxia.
This is a life changing condition that affects me 24/7. Balance, walking, just going from one room to another becomes a mental and physical challenge, while relying on my hubby to carry laundry and just about anything. Fatigue is a constant problem too. Luckily, I can still prepare and cook a meal, but it will take up all my energy. I stopped driving last year and this was another blow. It takes away your independence which I’m sure most of you have found.
Ataxia affects not only the person living with the symptoms 24/7 but also the family and friends, loved ones who support them through this long journey that is disabling and life changing. Hubby agrees that Ataxia has changed his life too from helping more around the house doing everyday tasks normally carried out by his wife before Ataxia took control. Normal things we used to take for granted like sharing lunch with friends or having family around for a meal or even taking a short weekend break are now largely difficult or impossible. The worst thing is the mental anguish of watching your partner struggling to maintain some sort of dignity.
It cannot be emphasized enough that ‘TIME IS CRITICAL TO DIAGNOSIS OF GLUTEN ATAXIA’! The longer a person is ingesting gluten, the more damage is being done to the cerebellum. This is a fact! BUT THERE IS ALWAYS HOPE!
OUR VISION AND PURPOSE!
Why the admin team at “The Gluten Effect” created this website?
Gluten Ataxia is an autoimmune and neurological condition of the central nervous system that effects the balance centre of the brain, the cerebellum. It is progressive until a strict gluten free diet is eaten.
The good news is that the symptoms of Gluten Ataxia can be stabilized, and in some cases even reversed, by eating a 100% gluten-free diet.
Time is critical though for this potentially progressive condition to be stabilized and the sooner the patient eats a 100% gluten free diet the less chance of irreparable damage to the cerebellum in the brain.
We are all familiar with the NHS long waiting times between medical appointments, then only to find that the awareness of Ataxia and Gluten Ataxia within specialists and neurologists is usually limited.
My experience of doctors at primary care level, our first port of call within the UK, is the awareness of gluten ataxia is virtually nil. While we are waiting for this new thinking and awareness that eating gluten can cause autoimmune ataxia to trickle down through the medical professions, where does that leave us?
Knowing that time is critical to the permanent damage that eating gluten can do to the cerebellum and our central nervous system, what can we do for ourselves?
WE CAN TAKE CONTROL:
We can do our own research and arm ourselves with knowledge about what is happening to our bodies.
We can be pro-active and become familiar with and recognise the early stages and symptoms of gluten ataxia.
We could try going gluten free to find out if this improves our symptoms.
We can take our own health and well-being into our own hands.
Read on through this website to make your own decision whether a gluten free diet could rescue and even restore your health.
INFORMATION AND ON WHAT PAGE:
ATAXIA page is a short overview of the different ataxias and the link with Coeliac Disease.
GLUTEN FREE page is The Gluten Free Diet, how important it is, foods to include, foods to leave out, your personal way forward.
RESEARCH page is about doing research and where to find research papers. Also for the latest on research into Gluten Ataxia.
NUMBERS AND PERCENTAGES page is estimated numbers of people that are affected. Also the genetics of Gluten Ataxia.
LINKS page is where you will find the references which correspond to the articles written on the pages.
BLOG page includes any relevant news and is ongoing information about Gluten Ataxia and journal.
STORIES page is your stories and journeys as told by you, those that have Gluten Ataxia.
CONTACT page with our email address for sending us your STORIES and information that is relevant to this website. Also we will answer questions if we are able to.
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.