Gluten ataxia

[Yvonne (Vonnie) Mostat, RN]

 

                                                                       GLUTEN ATAXIA

 

GLUTEN ATAXIA. Yes it is true!  Gluten Ataxia is a rare neurological auto-immune condition involving your body’s reaction to the gluten protein found in wheat, barley, and rye. It can cause irreversible damage to the part of your brain called the cerebellum, according to practitioners who first identified the condition about a decade ago. Yet still some physicians are skeptical about it, just like a decade ago physicians thought patients suggesting celiac disease where a “little touched” in their brain anyway!

This damage potentially can cause problems with your gait, and with your gross motor skills, resulting in loss of co-ordination and possibly leading to significant, progressive disability in some cases. It is not all “gut” related as we once thought, and dermatitis herpetiformis is not a blistery, itchy patch of sores caused by neurotic people, or someone with eczema, it has been called the “itchiest,  and horrifically sore”, not compared to eczema which is more of a rash and not as itchy. It is the group of sores where you want to soak your head in a tub of  cold cold water when you first arrive home from work.

“When you have Gluten Ataxia, the antibodies your body produces in response to gluten ingestion mistakenly attacks your cerebellum, the part of your brain responsible for motor control and muscle tone. The condition is also autoimmune in nature, which means it involves a mistake attack by your own disease-fighting white blood cells, spurned on by gluten ingestion, as opposed to a direct attack on the brain by the gluten protein itself. *Left unchecked this autoimmune attack usually progresses slowly, but resulting problems in balance and motor control eventually are irreversible due to brain damage. Up to 60% of patients with gluten ataxia have evidence of cerebellar atrophy – literally shrinkage of that part of their brains. When examined with magnetic resonance imaging (MRI) technology, In some people an MRI also will reveal bright white spots on the bran that indicate damage.”

Reading this I say to myself, and possible to you too, “I am considered a brittle celiac for over 30 years, and have had some accidental ingestions of gluten, but never a deliberate, defiant ingestion of gluten. I know that everything contains a small amount of gluten, approximately .20%  but this is not me!”

HOW MANY PEOPLE SUFFER FROM GLUTEN ATAXIA?

“Because gluten ataxia is such a newly-defined condition and not all healthcare providers accept it as of yet, it is not clear how many people might suffer from it,” – and not be aware that some of their symptoms are part of gluten and that can be very scary. Do I have Cancer, Parkinson’s Disease, Dementia, or even Alzheimer’s Disease?

Dr. Marios Hadjivassilou, a consultant neurologist at Sheffield Teaching Hospitals in the United Kingdom and the neurologist who first described gluten ataxia, says as many as 41% of people with ataxia with no known cause might, in fact, have gluten ataxia. (We all know the name Dr. Hajivassilou, even though we may not pronounce it correctly, “Other estimates have placed those figures lower – somewhere I the range of 15.5% to 36%.”
GLUTEN ATAXIA SYMPTOMS: are undistinguishable from symptoms or other forms of ataxia. If you have gluten ataxia, your symptoms may start out as mild balance problems – you might be unsteady on your feet, or have trouble moving your legs.  As symptoms progress some people

 

PAGE 2

 

say they walk or even talk as if they are drunk”. ‘That is what I used to joke with people about. I am not a drinker even though it might seem like I am.’

“As the autoimmune damage to your cerebellum progresses, your eyes likely will become involved, potentially moving back and forth rapidly and involuntarily. In addition, your fine motor skills may suffer, making it more difficult for you to work writing instruments, zip zippers, or to manipulate buttons on your clothing. (I got to that point and wondered if I was getting very early Alzheimer’s Disease or Dementia. Terribly worrying!)

DIAGNOSING: “Since not all health care providers accept gluten ataxia, as a valid diagnosis, or even know about it, and not all health care providers will test you for the condition if you show symptoms. In addition, experts in the field of gluten induced disease only recently have developed a consensus on how to test for gluten ataxia.: (From a person who used to be told she had beautiful writing, almost calligraphy in style, I went to ‘Could not even read what you wrote!”. Demeaning!

A group of top researchers in the field of celiac disease and non-celiac gluten sensitivity has issued a consensus statement on how practitioner can diagnose all gluten-related conditions, including gluten ataxia.

OVERVIEW: “When you have gluten ataxia, the antibodies your body produces in response to gluten ingestion, mistakenly attack your cerebellum, the part of the brain responsible for balance, motor control, and muscle tone. The condition is autoimmune in nature, which means it involves a mistaken attack by your ow disease-fighting white blood cells, spurred o by glute ingestion, as opposed to a direct attack on the brain by the gluten protein itself. Left unchecked, this autoimmune attack usually progresses slowly, but the resulting problems in balance and motor control eventually are irreversible due to brain damage.

Up to 60% of patients with gluten ataxia have evidence of cerebellar atrophy – literally, shrinkage of that part of their brain brains … when examined with magnetic resonance imaging (MRI) technology. In some people, an MRI also will reveal bright white spots on the brain that indicate damage.”  THAT STATEMENT REALLY CONCERNED ME because after my ordeal last Summer I had an MRI and It noted these bright white spots and told me to repeat the MRI in six months.

HOW MANY PEOPLE SUFFER FROM GLUTEN ATAXIA?  Because gluten ataxia is such a newly-defined condition, and not all healthcare providers accept it as of yet, it is not clear how may people might suffer from it.

Dr. lMarios Hadjivassilou, a consultant neurologist at Sheffield Teaching Hospitals in the United Kingdom and the neurologist who first described gluten ataxia, Sys as many as 41% of all people with ataxia with no known cause might, in fact, have gluten ataxia.  Other estimates have placed those figures lower … somewhere in the range of 11.5% to 36%.

GLUTEN ATAXIA SYMPTOMS: “are indistinguishable from symptoms or other forms of ataxia, your symptoms may start out as mild balance problems … you might be unsteady on your feet, or have trouble moving your legs.

As symptoms progress, some people say they walk or even talk as if they are drunk As the autoimmune damage to your cerebellum progresses, your eyes likely will become involved, potentially moving back and forth rapidly and involuntarily.

PAGE 3

 

In addition, your fine motor skills may suffer, making it more difficult for you to work writing instruments, zip zippers, or to manipulate buttons on your clothing.”

DIAGNOSIS:  “Since not al healthcare providers accept gluten ataxia as a valid diagnosis, not all health care providers accept gluten ataxia as a valid diagnosis, not all healthcare providers will TEST you for the condition if you show symptoms. In addition, experts in the field of gluten … induced disease only recently have developed a consensus on how to test for gluten ataxia.

Gluten ataxia diagnosis involves the use of specific celiac disease blood tests, although not the tests that are considered the more accurate test for celiac disease. If any of those tests show a positive result, then the healthcare provided should prescribe a strict gluten -free diet.

If ataxia symptoms stabilize or improve the diet, then it’s considered strong indication that the ataxia was gluten-induced, according to the consensus statement.”

TREATMENT:  If you are diagnosed with gluten ataxia, you need to follow a very strict gluten-free diet with absolutely no cheating according to Dr. Hadjivassilou.”

‘THAT IS THE STATEMENT THAT TROUBLES ME!  I have followed the strict gluten free diet for over 30 years, to the point that we do not go out to dinner, give our host a list of food that I cannot eat, and they are reluctant to invite me for meals because they are scared I will “become ill”. So I offer to take a pre-made dinner for myself. We call ahead of time, check the labels and have determined over the last five years at least not to buy any food items that do not have the ‘Gluten Free’ label’ on the package. People who are diagnosed with gluten ataxia, and from people with severe neurological problems associated with celiac disease still suffer from outbreaks, and here my husband always so helpful says, “Well, at least you have Dermatitis Herpetiformis to fall back on, because any sign of DH sores show you have been infected with gluten.” People say that the neurological symptoms take much longer to resolve, while some stabilize but never improve.  Will my symptoms improve over time. Apparently, so far, not. I had a follow-up MRI in March and the white spots were still there.  I did not have stroke as suggested last June. I had several “bleeds”  but was told that they would resolve. (It was  an emergency life-threatening surgery on the bowels so I was told I was fortunate to be alive. A WORD FROM VERY WELL HEALTH: “

 

 

[trents]

Thanks, Yvonne. Great info. Made me think of my wife's uncle who has developed this really strange gate and been tested for all the usual suspected causes without any answers.

[shadycharacter]

1 hour ago, trents said:

Thanks, Yvonne. Great info. Made me think of my wife's uncle who has developed this really strange gate and been tested for all the usual suspected causes without any answers.

Here's another interesting article about gluten ataxia. 

Gluten ataxia: when grain attacks brain

https://www.foodsmatter.com/coeliac-disease/general-articles/gluten-ataxia-06-16.html

It says, among other things, that people with gluten ataxia may test negative for the usual gluten-related antibodies but positive for ttg-6 antibodies. Unfortunately that test is not widely available. 

 

 

 

 

[knitty kitty]

Thiamine deficiency is frequently found in Celiac Disease and gluten free diets can be low in Thiamine.  

Thiamine is definitely related to changes in the cerebellum resulting in slurred speech, involuntary eye movement (nystagmus), and gait ataxia.

Bright spots in brain imaging can be found in Thiamine deficiency.

Thiamine is nontoxic and safe.  Administration of Thiamine can improve ataxia.

Ttg6 affects the mitochondria.  Mitochondria utilize thiamine to produce energy. In states thiamine insufficiency, thiamine supplementation has shown to be beneficial.

Articles....

An In Vitro Study on Mitochondrial Compensatory Response Induced by Gliadin Peptides in Caco-2 Cells

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6514596/

"Apart from the role in providing power to cells and affecting cell metabolism (e.g., nutritional sensing, synthesis of metabolic precursors, calcium regulation, maintenance of redox regulation and decision in cell fate) [55], mitochondria are relevant in oxidative stress. In this framework, the understanding of the relationship between oxidative stressors, such as gliadin, and these organelles could improve our knowledge of the pathophysiology of gluten-related disorders."

And...

Therapies for mitochondrial diseases and current clinical trials

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5773113/

"Thiamine (vitamin B1) also enhances pyruvate dehydrogenase activity, thereby increasing pyruvate oxidation and reduced cofactors (NADH and FADH2) generation. Thiamine has been used in mitochondrial disorders individually or in combination with other agents."

And...

Brain mitochondrial metabolism in experimental thiamine deficiency

https://pubmed.ncbi.nlm.nih.gov/6493495/

"We conclude that the mitochondrial abnormalities resulting from thiamine deficiency are secondary to depression of thiamine-mediated enzyme activity, rather than from a putative role of thiamine in chemiosmotic coupling, and that the resulting abnormalities in ATP synthesis and perhaps in glutamate catabolism result in the irreversible neurologic defect seen in this disease."

And...

A case of celiac disease with hallucinations

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5765830/

"Thiamine deficiency is associated with Wernicke encephalopathy, which can present following malnutrition or malabsorption, most often with symptoms like ataxia, oculomotor disturbances, and changes in mental status."

And...

Hiding in Plain Sight: Modern Thiamine Deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

And...

Susceptibility of the cerebellum to thiamine deficiency

https://pubmed.ncbi.nlm.nih.gov/16527765/

And...

High-dose thiamine improves the symptoms of Friedreich's ataxia

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3669970/

And...

Thiamine and spinocerebellar ataxia type 2

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3604288/

And...

Wernicke's Encephalopathy

https://www.ncbi.nlm.nih.gov/books/NBK470344/

And...

Microglial activation and vascular responses that are associated with early thalamic neurodegeneration resulting from thiamine deficiency

https://pubmed.ncbi.nlm.nih.gov/29427613/

And...

Subacute sensory ataxia and optic neuropathy with thiamine deficiency

https://pubmed.ncbi.nlm.nih.gov/20308997/

And...

Neurological, Psychiatric, and Biochemical Aspects of Thiamine Deficiency in Children and Adults

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6459027/

And...

Thiamin contents of cerebrospinal fluid, plasma and erythrocytes in cerebellar ataxias

https://pubmed.ncbi.nlm.nih.gov/1592072/

"The results showed a significant decrease in thiamin and thiamin monophosphate in the cerebrospinal fluid and in the plasma of ataxic subjects, in comparison to controls."

And...

Wernicke’s Encephalopathy: Typical Disease with an Atypical Clinicoradiological Manifestation

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7394616/

And...

Vitamin B 1, B 2 and B 6 deficiency in neurological disorders

https://pubmed.ncbi.nlm.nih.gov/6164769/

And...

Use of a Gluten-Free Diet in Schizophrenia: A Systematic Review 

https://academic.oup.com/advances/article/9/6/824/5132957

And...I hope this helps.

Edited June 9, 2022 by knitty kitty
Typo correction

[Jays911]

I have it. Started falling in May of 2021.  My docs, after much testing and some other treatment attempts, put me on a large dosage of slow magnesium. No falls since then. I still have tremors,  but much less intense. 

[StrongStar]

On 6/8/2022 at 10:43 PM, Yvonne (Vonnie) Mostat, RN said:

 

                                                                       GLUTEN ATAXIA

 

GLUTEN ATAXIA. Yes it is true!  Gluten Ataxia is a rare neurological auto-immune condition involving your body’s reaction to the gluten protein found in wheat, barley, and rye. It can cause irreversible damage to the part of your brain called the cerebellum, according to practitioners who first identified the condition about a decade ago. Yet still some physicians are skeptical about it, just like a decade ago physicians thought patients suggesting celiac disease where a “little touched” in their brain anyway!

This damage potentially can cause problems with your gait, and with your gross motor skills, resulting in loss of co-ordination and possibly leading to significant, progressive disability in some cases. It is not all “gut” related as we once thought, and dermatitis herpetiformis is not a blistery, itchy patch of sores caused by neurotic people, or someone with eczema, it has been called the “itchiest,  and horrifically sore”, not compared to eczema which is more of a rash and not as itchy. It is the group of sores where you want to soak your head in a tub of  cold cold water when you first arrive home from work.

“When you have Gluten Ataxia, the antibodies your body produces in response to gluten ingestion mistakenly attacks your cerebellum, the part of your brain responsible for motor control and muscle tone. The condition is also autoimmune in nature, which means it involves a mistake attack by your own disease-fighting white blood cells, spurned on by gluten ingestion, as opposed to a direct attack on the brain by the gluten protein itself. *Left unchecked this autoimmune attack usually progresses slowly, but resulting problems in balance and motor control eventually are irreversible due to brain damage. Up to 60% of patients with gluten ataxia have evidence of cerebellar atrophy – literally shrinkage of that part of their brains. When examined with magnetic resonance imaging (MRI) technology, In some people an MRI also will reveal bright white spots on the bran that indicate damage.”

Reading this I say to myself, and possible to you too, “I am considered a brittle celiac for over 30 years, and have had some accidental ingestions of gluten, but never a deliberate, defiant ingestion of gluten. I know that everything contains a small amount of gluten, approximately .20%  but this is not me!”

HOW MANY PEOPLE SUFFER FROM GLUTEN ATAXIA?

“Because gluten ataxia is such a newly-defined condition and not all healthcare providers accept it as of yet, it is not clear how many people might suffer from it,” – and not be aware that some of their symptoms are part of gluten and that can be very scary. Do I have Cancer, Parkinson’s Disease, Dementia, or even Alzheimer’s Disease?

Dr. Marios Hadjivassilou, a consultant neurologist at Sheffield Teaching Hospitals in the United Kingdom and the neurologist who first described gluten ataxia, says as many as 41% of people with ataxia with no known cause might, in fact, have gluten ataxia. (We all know the name Dr. Hajivassilou, even though we may not pronounce it correctly, “Other estimates have placed those figures lower – somewhere I the range of 15.5% to 36%.”
GLUTEN ATAXIA SYMPTOMS: are undistinguishable from symptoms or other forms of ataxia. If you have gluten ataxia, your symptoms may start out as mild balance problems – you might be unsteady on your feet, or have trouble moving your legs.  As symptoms progress some people

 

PAGE 2

 

say they walk or even talk as if they are drunk”. ‘That is what I used to joke with people about. I am not a drinker even though it might seem like I am.’

“As the autoimmune damage to your cerebellum progresses, your eyes likely will become involved, potentially moving back and forth rapidly and involuntarily. In addition, your fine motor skills may suffer, making it more difficult for you to work writing instruments, zip zippers, or to manipulate buttons on your clothing. (I got to that point and wondered if I was getting very early Alzheimer’s Disease or Dementia. Terribly worrying!)

DIAGNOSING: “Since not all health care providers accept gluten ataxia, as a valid diagnosis, or even know about it, and not all health care providers will test you for the condition if you show symptoms. In addition, experts in the field of gluten induced disease only recently have developed a consensus on how to test for gluten ataxia.: (From a person who used to be told she had beautiful writing, almost calligraphy in style, I went to ‘Could not even read what you wrote!”. Demeaning!

A group of top researchers in the field of celiac disease and non-celiac gluten sensitivity has issued a consensus statement on how practitioner can diagnose all gluten-related conditions, including gluten ataxia.

OVERVIEW: “When you have gluten ataxia, the antibodies your body produces in response to gluten ingestion, mistakenly attack your cerebellum, the part of the brain responsible for balance, motor control, and muscle tone. The condition is autoimmune in nature, which means it involves a mistaken attack by your ow disease-fighting white blood cells, spurred o by glute ingestion, as opposed to a direct attack on the brain by the gluten protein itself. Left unchecked, this autoimmune attack usually progresses slowly, but the resulting problems in balance and motor control eventually are irreversible due to brain damage.

Up to 60% of patients with gluten ataxia have evidence of cerebellar atrophy – literally, shrinkage of that part of their brain brains … when examined with magnetic resonance imaging (MRI) technology. In some people, an MRI also will reveal bright white spots on the brain that indicate damage.”  THAT STATEMENT REALLY CONCERNED ME because after my ordeal last Summer I had an MRI and It noted these bright white spots and told me to repeat the MRI in six months.

HOW MANY PEOPLE SUFFER FROM GLUTEN ATAXIA?  Because gluten ataxia is such a newly-defined condition, and not all healthcare providers accept it as of yet, it is not clear how may people might suffer from it.

Dr. lMarios Hadjivassilou, a consultant neurologist at Sheffield Teaching Hospitals in the United Kingdom and the neurologist who first described gluten ataxia, Sys as many as 41% of all people with ataxia with no known cause might, in fact, have gluten ataxia.  Other estimates have placed those figures lower … somewhere in the range of 11.5% to 36%.

GLUTEN ATAXIA SYMPTOMS: “are indistinguishable from symptoms or other forms of ataxia, your symptoms may start out as mild balance problems … you might be unsteady on your feet, or have trouble moving your legs.

As symptoms progress, some people say they walk or even talk as if they are drunk As the autoimmune damage to your cerebellum progresses, your eyes likely will become involved, potentially moving back and forth rapidly and involuntarily.

PAGE 3

 

In addition, your fine motor skills may suffer, making it more difficult for you to work writing instruments, zip zippers, or to manipulate buttons on your clothing.”

DIAGNOSIS:  “Since not al healthcare providers accept gluten ataxia as a valid diagnosis, not all health care providers accept gluten ataxia as a valid diagnosis, not all healthcare providers will TEST you for the condition if you show symptoms. In addition, experts in the field of gluten … induced disease only recently have developed a consensus on how to test for gluten ataxia.

Gluten ataxia diagnosis involves the use of specific celiac disease blood tests, although not the tests that are considered the more accurate test for celiac disease. If any of those tests show a positive result, then the healthcare provided should prescribe a strict gluten -free diet.

If ataxia symptoms stabilize or improve the diet, then it’s considered strong indication that the ataxia was gluten-induced, according to the consensus statement.”

TREATMENT:  If you are diagnosed with gluten ataxia, you need to follow a very strict gluten-free diet with absolutely no cheating according to Dr. Hadjivassilou.”

‘THAT IS THE STATEMENT THAT TROUBLES ME!  I have followed the strict gluten free diet for over 30 years, to the point that we do not go out to dinner, give our host a list of food that I cannot eat, and they are reluctant to invite me for meals because they are scared I will “become ill”. So I offer to take a pre-made dinner for myself. We call ahead of time, check the labels and have determined over the last five years at least not to buy any food items that do not have the ‘Gluten Free’ label’ on the package. People who are diagnosed with gluten ataxia, and from people with severe neurological problems associated with celiac disease still suffer from outbreaks, and here my husband always so helpful says, “Well, at least you have Dermatitis Herpetiformis to fall back on, because any sign of DH sores show you have been infected with gluten.” People say that the neurological symptoms take much longer to resolve, while some stabilize but never improve.  Will my symptoms improve over time. Apparently, so far, not. I had a follow-up MRI in March and the white spots were still there.  I did not have stroke as suggested last June. I had several “bleeds”  but was told that they would resolve. (It was  an emergency life-threatening surgery on the bowels so I was told I was fortunate to be alive. A WORD FROM VERY WELL HEALTH: “

 

 

Does gluten ataxia coincide with celiac disease? I tested positive for celiac but I have been struggling with feeling so out of it, forgetting things, lack of coordination, finding it hard to speak... I'm 25 so I thought wow, this is really early Alzheimer's. My family members who have celiac get DH and bad digestive issues but I mostly feel it in my brain 

[trents]

Welcome to the forum, StrongStar!

Absolutely! Ataxia and other neurological effects are a well known manifestation of both celiac disease and NCGS (Non Celiac Gluten Sensitivity) for some people. The symptoms and physical manifestations of celiac disease and NCGS are tremendously varied and go well-beyond the classic ones related to digestive issues alone. What you describe sounds like it could be ataxia but more like what we call "brain fog".

How long ago were you diagnosed with celiac disease? How are you getting along with your gluten-free diet?

The most important thing I want to recommend to you is to start taking a gluten-free high potency B-vitamin complex along with 5000IU of D3 and magnesium daily. Those neurological manifestations are mainly due to the malabsorption of vitamins and minerals caused by celiac disease. The inflammatory response to gluten that is caused by celiac disease damages the villi of the small bowel. This is the place where all of our nutrition from what we eat is absorbed. The damage villi make nutrient absorption less efficient. So, we need to add more vitamins and minerals to the mix. It often takes around two years for complete healing of the villi once going truly gluten free.

[Scott Adams]

9 hours ago, StrongStar said:

Does gluten ataxia coincide with celiac disease? I tested positive for celiac but I have been struggling with feeling so out of it, forgetting things, lack of coordination, finding it hard to speak... I'm 25 so I thought wow, this is really early Alzheimer's. My family members who have celiac get DH and bad digestive issues but I mostly feel it in my brain 

Welcome to the forum, and please see this category on our site for the various summaries we've done on the research that has been published on gluten ataxia and celiac disease:
https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/ataxia-nerve-disease-neuropathy-brain-damage-and-celiac-disease/ 

[ravenwoodglass]

11 hours ago, StrongStar said:

Does gluten ataxia coincide with celiac disease? I tested positive for celiac but I have been struggling with feeling so out of it, forgetting things, lack of coordination, finding it hard to speak... I'm 25 so I thought wow, this is really early Alzheimer's. My family members who have celiac get DH and bad digestive issues but I mostly feel it in my brain 

I am so sorry that you have been going through this. Do know that a lot of healing is possible but it does take time. My ataxia and aphasia was severe but I have mostly healed and hope you will also. I found a physical therapist to be helpful with balance and coordination. I do still have some difficulty with speech but for the most part I can now hold a conversation and if you hold a fork up I can tell you what it is. I had times when I got in my car and just cryed because I didn't know what to do with the key. I hope you get better soon but don't lose heart if it takes some time. It took 6 months before I was able to walk without the aid of canes or walls. If I could heal as much as I have you will likely be able to heal also. Hang in there and avoid cross contamination as much as you can. Even a small amount can set us back when the brain and nervous system is impacted. Sublingual B12 and a good stress B can help with healing and don't be scared by the high levels in them. Your body will excrete any excess you don't need.  I hope you heal soon.

[Wheatwacked]

@StrongStar Welcome. In a way you are lucky to be in a family of recognized Celiacs.  It saved you years of neurologic tests and side effects of medications. Not to mention the financial costs and suffering.

Amoung other things, Gluten acts on our opiod receptors. Some have severe withdrawal, some don't. Like opium or alcohol it can make you high but because it is just a donut, no one thinks it could be making you stumble and forget. It may seem worse at the beginnibg. The fog will clear. 

• Get lots of vitamin D. The faster you get your blood level up around 80 ng/ml you will feel the effects. Vitamin D effects mood, bone health,and the immune system. 
• Take lots of Thiamine, around 2000 mg a day to build up a reserve.
• For a few months while healing stick to a Gluten free diet of simple, unprocessed foods like suggested in the Fasano or Haas diets.
• Take steps to get enough of the other 20 vitamins and minerals absorbed in the small intestine, that can be affected by Celiac Disease Malabsorption Syndrome. Aside from the B vitamins, Potassium, choline, zinc, vitamin C, calcium and iodine intakes are often very low, but show no overt symptoms, even while their lack can contribute to your symptoms.

 

[StrongStar]

On 7/15/2022 at 4:02 PM, trents said:

Welcome to the forum, StrongStar!

Absolutely! Ataxia and other neurological effects are a well known manifestation of both celiac disease and NCGS (Non Celiac Gluten Sensitivity) for some people. The symptoms and physical manifestations of celiac disease and NCGS are tremendously varied and go well-beyond the classic ones related to digestive issues alone. What you describe sounds like it could be ataxia but more like what we call "brain fog".

How long ago were you diagnosed with celiac disease? How are you getting along with your gluten-free diet?

The most important thing I want to recommend to you is to start taking a gluten-free high potency B-vitamin complex along with 5000IU of D3 and magnesium daily. Those neurological manifestations are mainly due to the malabsorption of vitamins and minerals caused by celiac disease. The inflammatory response to gluten that is caused by celiac disease damages the villi of the small bowel. This is the place where all of our nutrition from what we eat is absorbed. The damage villi make nutrient absorption less efficient. So, we need to add more vitamins and minerals to the mix. It often takes around two years for complete healing of the villi once going truly gluten free.

Thanks so much. It was last January but it's been a struggle to know what information to listen to and how to interpret it. This is really helpful. Thank you 

20 hours ago, Wheatwacked said:

@StrongStar Welcome. In a way you are lucky to be in a family of recognized Celiacs.  It saved you years of neurologic tests and side effects of medications. Not to mention the financial costs and suffering.

Amoung other things, Gluten acts on our opiod receptors. Some have severe withdrawal, some don't. Like opium or alcohol it can make you high but because it is just a donut, no one thinks it could be making you stumble and forget. It may seem worse at the beginnibg. The fog will clear. 

• Get lots of vitamin D. The faster you get your blood level up around 80 ng/ml you will feel the effects. Vitamin D effects mood, bone health,and the immune system. 
• Take lots of Thiamine, around 2000 mg a day to build up a reserve.
• For a few months while healing stick to a Gluten free diet of simple, unprocessed foods like suggested in the Fasano or Haas diets.
• Take steps to get enough of the other 20 vitamins and minerals absorbed in the small intestine, that can be affected by Celiac Disease Malabsorption Syndrome. Aside from the B vitamins, Potassium, choline, zinc, vitamin C, calcium and iodine intakes are often very low, but show no overt symptoms, even while their lack can contribute to your symptoms.

 

Thanks so much. I wasn't aware of these other vitamins before... This is so helpful 

 

[StrongStar]

22 hours ago, ravenwoodglass said:

I am so sorry that you have been going through this. Do know that a lot of healing is possible but it does take time. My ataxia and aphasia was severe but I have mostly healed and hope you will also. I found a physical therapist to be helpful with balance and coordination. I do still have some difficulty with speech but for the most part I can now hold a conversation and if you hold a fork up I can tell you what it is. I had times when I got in my car and just cryed because I didn't know what to do with the key. I hope you get better soon but don't lose heart if it takes some time. It took 6 months before I was able to walk without the aid of canes or walls. If I could heal as much as I have you will likely be able to heal also. Hang in there and avoid cross contamination as much as you can. Even a small amount can set us back when the brain and nervous system is impacted. Sublingual B12 and a good stress B can help with healing and don't be scared by the high levels in them. Your body will excrete any excess you don't need.  I hope you heal soon.

Thank you so much. very helpful and encouraging