Got a letter from Sheffield Ataxia Center saying the brain imaging confirms a degree of cerebellar atrophy.
It also says, this is the typical pattern of what we see with gluten ataxia.
Does them mean I have cerebellar atrophy ataxia and gluten ataxia.
🙂 You have a diagnosis of Gluten Ataxia. And, on your MRI, Cerebellar Atrophy was visible. Atrophy (shrinkage) is common, but not always, for many people diagnosed with ataxia.
What happens in gluten ataxia?
Gluten ataxia is an autoimmune disorder in which the antibodies that are released when digesting gluten attack part of the brain by mistake.
Gluten is a protein found in wheat, rye, and barley. Though most people have no trouble with digesting this protein, many people have a gluten sensitivity or a disease called celiac sprue.
People who have issues digesting gluten may develop digestive problems and cause damage to the small intestine when they eat something containing gluten.
In some cases, the body's reaction to gluten can become quite severe. In these cases, the body starts to attack the central nervous system, which may cause gluten ataxia.
In extreme cases, the body's reaction to gluten is so severe that the body starts to attack the central nervous system.
When somebody has gluten ataxia, the antibodies that are released when they digest gluten attack part of the brain called the cerebellum.
The cerebellum is the part of the brain located in the back of the head above the neck. The cerebellum is responsible for movement and has a direct impact on activities such as:
balance
speech
posture
walking
running
The symptoms of gluten ataxia start off mild and gradually become worse over time. When left untreated, the condition could lead to permanent damage.
There is also evidence that people who suffer from gluten ataxia will show signs of cerebellar atrophy. Cerebellar atrophy is the shrinkage of the cerebellum.
Unfortunately, gluten ataxia is a relatively new discovery and not yet widely accepted by doctors and other medical professionals. This can make a diagnosis and proper treatment difficult to obtain.
However, there are groups of researchers dedicated to spreading information about this rare condition.
As gluten ataxia progresses, a person may experience dizziness and have problems with balance when standing.
Gluten ataxia is a progressive condition, which means that symptoms may start off mild and almost unnoticed, and gradually progress to being debilitating.
The symptoms of gluten ataxia are similar to symptoms of other ataxia conditions, which can make it tricky to get an accurate diagnosis.
Some of the more typical symptoms a person may experience include:
problems with general movements, such as walking or arm control
unsteadiness
issues with coordination
loss of precise movement skills, such as the ability to write or button a shirt
difficulty talking
vision issues
symptoms of nerve damage in the hands, feet, and limbs
Although gluten ataxia is a gluten sensitivity issue, digestive issues are not typically a symptom.
Progression over time
Gluten ataxia is a slowly progressive disease. It is very similar to other types of ataxia that also affect the cerebellum. This can make it difficult to diagnose or recognize as a specific, treatable condition.
It is not uncommon for a person's general movement skills to be affected first, which is typically demonstrated by trouble walking. A person is more likely to:
trip
stumble
have an abnormal way of walking
As the disease progresses, a person may start to notice issues with:
dizziness
balance when standing
difficulty with speech
writing or getting dressed
When a person first experiences these symptoms, it is likely that they can reverse the progression through eliminating gluten from their diet.
If the condition is not stopped, however, the worsening symptoms can become permanent.
Copied from medicalnewstoday.com
Hi Wobblybee, if this has been progressing over a 16 year period it’s most likely permanent.
🤔 It’s likely you’re right Bob, it’s said that the sooner a person is diagnosed and action taken, the better the outcome. But, not everybody is the same. I expect you’ll have had good advice at Sheffield🙂
Been on gluten free diet for about a year. Not getting any better.
I am also on a drug for Episodic Ataxia.
🤔 Is the drug prescribed for a specific symptom.
Sudden attacks I think.
Its taking the edge off when I look up and around. Great for when I can get out for a walk.
I don’t have to keep looking at the ground all the time. I can look up into the trees now and see the birds of pray and other animals.
I still have to be careful and look around slowly and as I start to go into slow motion and start going bad again.
But it an improvement.
I am so great full to everyone treating me at Sheffield Ataxia Center.
🙂 It makes such a difference being able to glance around with confidence. Which medication do you find helpful, Bob 🤔
Flunarizin-CT Hartkapseln
It’s not licensed in the UK.
🙂 Earlier this year, I was referred to a Specialist Neurologist in London, he gave me a trial of Flunarizine (Sibelium). He said, this is primarily useful for Migraines, but it could help be helpful for BPPV ( Benign Paroxysmal Posterior Vertigo..which I have). BPPV makes me very dizzy turning over in bed.
I have some permanent damage to the cerebellum, slight but the impact has been life changing. I too am grateful for any help with ataxia, particularly with the Sheffield support and also here, the sharing of info from fellow ataxians and with Ataxia UK who are brilliant. The positive thing is, we personally have control, unless things go wrong, over at least staying the same. In this way we are very fortunate though everyone experiences and understand their disabilities in different ways.
Wobblybee,
Thank you for your posts as your a fountain of knowledge... So useful
Lucy xx
Interesting info here Bee .. very difficult eliminating all gluten and getting GP blood diagnosis. My granddaughter has coeliacs disease and if she not completely gluten free including cross contamination, she gets griping pains in her stomach. Presumably gluten ataxians dont get pains? I guess all types of ataxia is best served by healthy diet like fruit and veg and naturally gluten free foods. Keeping weight down is big issue for me.. a lot of glutenfree products are loaded with sugar! and of course we need to fit in time to exercise whilst pacing ourselves .. never enough energy! What fun we have eh?
😯 Patsy, a friend diagnosed with Gluten Ataxia has challenging stomach pain if she inadvertently ingests gluten. But, info online doesn’t always confirm this will be the case. My friend has also had a query re Candidiasis.
Personally, I seem to have a problem if I have too much sugar. I’ve been told twice that I have Candidiasis, an over growth of yeast in my system. I did have this under control until recently (the house move and flu 🙄), and I find ‘brain fog’ is less of an issue when I limit sugar, yeast and carbohydrates.
Hi Wobblybee, just wondering if you can help me with a wee query. I have been diagnosed with CAPOS (gene mutation ATP1a3). I also have allergies to fish, crustacean, nuts, legume and egg, barley is a legume. Given this knowledge would it be possible for me to have gluten ataxia as well as CAPOS. I know it is not possible for you to give a definitive answer to this but I was just looking for your thoughts.
🤔 Leona, from posts I’ve read on various groups, it seems some people are actually diagnosed with more than one type. Some seem to overlap with symptoms. But, allergies are quite specific.
To have peace of mind, you could request the specific test for Gluten Ataxia.
Spoke to a doctor at my local surgery. He says it’s not a diagnosis for Ataxia.
I contacted the professor’s secretary and I explained this and asked for a letter confirming I have Ataxia.
I explained to her I asked the professor on the day I was there seeing him and he said I did have Ataxia.
🤔 You must be confused, I am. Usually the Neurologist sends a copy letter to the GP explaining the findings and diagnosis, which as you’ve said, is Gluten Ataxia. It is ataxia, caused by Gluten.
Can you tell me in what other foods contain gluten
🤔 A gluten free diet is primarily advised for people diagnosed with Gluten Ataxia, Celiac Disease, Gluten Sensitivity, and in some cases Irritable Bowel Disease. But it isn’t necessarily beneficial to everyone.
You can google ‘foods containing gluten’ and it may very well depend on which part of the world you live in.
Wheat, rye, and barley are the major foods that need to be avoided while following a gluten-free diet. Gluten is also commonly added to processed foods, such as canned and boxed items. Furthermore, some grains, such as oats, may be cross-contaminated with gluten, depending on where they were processed.22 Dec 2019
healthline.com › nutrition
Do you know anything about Spino Cerebral Ataxia ??
No, I don’t. Sorry.
🤔 There are many, many types of Spinocerebellar Ataxia (SCA), and other Ataxias. But they do have symptoms in common.
Common symptoms of Ataxia are:
Lack of coordination.
Slurred speech.
Trouble eating and swallowing.
Deterioration of fine motor skills.
Difficulty walking.
Gait abnormalities.
Eye movement abnormalities.
Tremors.
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ataxia.org › what-is-ataxia
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