Gluten ATAXIA ...staring into space..looking for answers

[CareyOsborne]

I haven't had a formal diagnosis of Gluten Ataxia.  Im exhausted, I am panicked.  As I keep having these moments of going into a space which starts with staring in space but leaves me finding it hard to move,  and when I do its slow, so so slow. My speech is slurred and hard.

Two years ago I saw a herbalist as I couldn't get any answers from Drs.  As a nurse I felt uncomfortable stopping gluten so without any real seriousness did.  I could not believe it ehen I got better.

 Decided I did not need tests but in April on holiday I think I got contaminated. I felt so ill,  I decided enough is enough time to test.

Had instant reactions that got so severe I stopped after a week.  I have days of doing better but any stress or too much exertion Im back to square one.  

 

These space staring moments come and go. My symptoms get worse and better

I feel a big fake, and have some black thoughts.

I don't get how it can come and go.

I also really want a diagnosis too scared to go to A and E.

 

[trents]

Welcome to the forum, CareyOsborne!

Sounds like you either suffer from Celiac disease or NCGS (Non Celiac Gluten Sensitivity). The two share many common symptoms and NCGS is 10x more common than celiac disease. Currently, there is no reliable test available for NCGS. celiac disease must first be ruled out. Be aware that any testing for celiac disease would require you to be eating regular amounts of gluten daily (defined by the Mayo Clinic as two slices of wheat bread or the gluten equivalent for 6-8 weeks before antibody testing and for two weeks prior to an endoscopy/biopsy. It takes time for antibodies to build up to detectable levels but damage to the small bowel villi apparently happens more quickly.

May I ask, why do you feel like "a big fake"? Can you elaborate on that?

Edited May 15, 2023 by trents

[CareyOsborne]

Hi 

 

Firstly thanks for replying.

I think I am feeling frustrated and being medically trained feel a need for a firm diagnosis.  Despite medicine letting me down I still hanker on to a proper diagnosis.

Also don't get why activity and stress make it worse.

 

many thanks

 

[CareyOsborne]

And also many symptoms I can relate yo but haven't seen anything about staring off with speech and mobility problems 

[Raquel2021]

54 minutes ago, CareyOsborne said:

I haven't had a formal diagnosis of Gluten Ataxia.  Im exhausted, I am panicked.  As I keep having these moments of going into a space which starts with staring in space but leaves me finding it hard to move,  and when I do its slow, so so slow. My speech is slurred and hard.

Two years ago I saw a herbalist as I couldn't get any answers from Drs.  As a nurse I felt uncomfortable stopping gluten so without any real seriousness did.  I could not believe it ehen I got better.

 Decided I did not need tests but in April on holiday I think I got contaminated. I felt so ill,  I decided enough is enough time to test.

Had instant reactions that got so severe I stopped after a week.  I have days of doing better but any stress or too much exertion Im back to square one.  

 

These space staring moments come and go. My symptoms get worse and better

I feel a big fake, and have some black thoughts.

I don't get how it can come and go.

I also really want a diagnosis too scared to go to A and E.

 

Is it possible to see a neurologist? They can do an MRI that could find you some answers. 

[trents]

Gluten disorders have a wide range of symptoms and affect people in different ways. It is quite varied. Some have frank GI distress, some have none of that, at least in the beginning. Some have brain fog and fatigue. Some have dermatitis herpetiformis. Some have neurologcial issues like ataxia. There is extreme variation. Many have a combination of symptoms. I had very mild GI symptoms but what led to my celiac diagnosis was elevated liver enzymes that were otherwise idiopathic.

[CareyOsborne]

14 minutes ago, trents said:

Gluten disorders have a wide range of symptoms and affect people in different ways. It is quite varied. Some have frank GI distress, some have none of that, at least in the beginning. Some have brain fog and fatigue. Some have dermatitis herpetiformis. Some have neurologcial issues like ataxia. There is extreme variation. Many have a combination of symptoms. I had very mild GI symptoms but what led to my celiac diagnosis was elevated liver enzymes that were otherwise idiopathic.

That is very interesting thank you for sharing.  I have  moderate /mild GI, rashes but the neuro is just horrible. I really after building up slowly and getting back to work have come to a stop   

[CareyOsborne]

20 minutes ago, Raquel2021 said:

Is it possible to see a neurologist? They can do an MRI that could find you some answers. 

Hello,

Waiting on an appointment,  Previous one showed a few white bits but nothing significant but that was a few years ago. I am hoping that. There will be little changes as I only tried for less than a week

[trents]

3 minutes ago, CareyOsborne said:

Hello,

Waiting on an appointment,  Previous one showed a few white bits but nothing significant but that was a few years ago. I am hoping that. There will be little changes as I only tried for less than a week

What was tried for less than a week? I wasn't clear on this from your original post. Did you stop gluten for one week or go back on it for a week?

[Wheatwacked]

Many with Celiac Disease become malnutritioned.    Many nutrients can cause brain fog.  

1 minute ago, CareyOsborne said:

a few white bits

     Gluten sensitivity and epilepsy: a systematic review     "Gluten-free diet (GFD) is effective in the management of epilepsy in 53% of cases."

"It is important that epilepsy is more broadly recognised within the spectrum of gluten-related disorders as these patients can be managed effectively if identified. However, clinicians must approach these cases with caution so as to not incorrectly diagnose epilepsy in those with gluten intolerance who have epilepsy mimics such as syncope, psychogenic non-epileptic seizures or migraine, amongst others."

[CareyOsborne]

1 hour ago, trents said:

What was tried for less than a week? I wasn't clear on this from your original post. Did you stop gluten for one week or go back on it for a week?

Sorry really struggling with cognition.  I managed to eat Gluten only for a week.

1 hour ago, Wheatwacked said:

Many with Celiac Disease become malnutritioned.    Many nutrients can cause brain fog.  

     Gluten sensitivity and epilepsy: a systematic review     "Gluten-free diet (GFD) is effective in the management of epilepsy in 53% of cases."

"It is important that epilepsy is more broadly recognised within the spectrum of gluten-related disorders as these patients can be managed effectively if identified. However, clinicians must approach these cases with caution so as to not incorrectly diagnose epilepsy in those with gluten intolerance who have epilepsy mimics such as syncope, psychogenic non-epileptic seizures or migraine, amongst others."

Gosh that is really interesting, thank you

[trents]

How long were you off gluten before that one week and are you back on gluten now and if son, how long have you been back on  One week back on gluten would not be enough to produce positive tests, either antibody or biopsy?

There is also the option of getting genetic testing done to see if you have the genetic potential for celiac disease. If not, then it's something else. If so, it would justify pursuing testing for celiac disease.

[Wheatwacked]

Then there is this. I think the increase in carbohydrate is mostly wheat flour. Calories that were formally nutrient dense are now empy calories that we need as a society to "fortify".  

"With westernisation however came an increase in the intake of refined carbohydrates and sugar in the Alaskan Inuit. Indeed, compared with the Inuit of Point Hope, the Inuit living in a boarding high school consumed more carbohydrates (48% vs 10% of total calories), less fat (39% vs 55% of total calories) and less protein (14% vs 35% of total calories)."

"Alaskan natives who had previously had just 1/18th the rate of death due to ischaemic heart disease in the mid-1950s had an identical rate of heart disease mortality by the mid-1980s compared with the USA. Importantly, one of the major dietary changes that occurred in the mid-1950s in Alaskan Inuit was an increase in the intake of carbohydrates and simple sugars."

"In the 1950s, only five diagnoses of diabetes had been made from eight hospitals serving Alaskan Inuit, ‘Five hospitals had never seen diabetes mellitus in an Eskimo’. More importantly, ‘Vital statistics reports showed 35 deaths due to diabetes in Alaska in the years 1919–1951, but none of these were in Eskimos’. In other words, prior to 1950, diabetes was virtually non-existent in the Alaskan Inuit."    Markedly increased intake of refined carbohydrates and sugar is associated with the rise of coronary heart disease and diabetes among the Alaskan Inuit

[knitty kitty]

@CareyOsborne

Hi, I'm sorry you're having such problems.  

In Celiac Disease, malabsorption affects all the essential vitamins and minerals across the board.  

I had severe vitamin deficiencies in several vitamins, but the one vitamin deficiency that caused severe ataxia was Thiamine.

Anxiety, panic attacks, slurred speech, deep dark depression, and absence seizures were some of the symptoms of Thiamine deficiency that I experienced.  I also had difficulty walking and balance issues.

Thiamine deficiency symptoms can wax and wane.  A twenty percent increase of thiamine can produce an eighty percent increase in brain function and hence an improvement in symptoms.

The brain needs more Thiamine during physical exercise and during emotional stress.  During these times, more Thiamine is used and Thiamine levels drop worsening symptoms.

Medical professionals are undereducated in nutrition and do not recognize vitamin deficiency symptoms (outside of alcoholism).

Get checked for thiamine deficiency by your doctor before supplementing.  Vitamin supplements will be reflected in blood tests causing false results.  

Medical professionals can administer Thiamine Hydrochloride by IV.  Thiamine is nontoxic and safe even in high doses.  You could request this at A and E.  If Thiamine deficiency is not corrected promptly, the damage can be permanent.

The best way to test for you deficiency is to take Thiamine and look for improvement.  I had improvement within an hour.  I took over the counter Thiamine Hydrochloride supplements.  

The World Health Organization says to take 500 - 1500 mg/day for a week and look for symptom improvement. Thiamine supplementation should continue for several months to years.  

Other forms of Thiamine that help ataxia include Benfotiamine (sulbuthiamine), and Allithiamine (Tetrahydrofurfuryl disulfide ) and Thiamax (TTFD).

Helpful information...

https://www.healthline.com/nutrition/thiamine-deficiency-symptoms#basics

And...

https://m.youtube.com/watch?v=m1-dXJCYVIM&pp=ygUpVGhpYW1pbmUgZGVmaWNpZW5jeSBzeW1wdG9tcyBlb251dHJpaXRpb24%3D

 

I suggest you talk to your doctor  thiamine deficiency and getting it corrected as soon as possible.

[CareyOsborne]

9 hours ago, trents said:

How long were you off gluten before that one week and are you back on gluten now and if son, how long have you been back on  One week back on gluten would not be enough to produce positive tests, either antibody or biopsy?

There is also the option of getting genetic testing done to see if you have the genetic potential for celiac disease. If not, then it's something else. If so, it would justify pursuing testing for celiac disease.

Yes I am aware of that,  funny enough the gp wasn't.  People with neurological problems with Gluten can test negative on the typical Tests.  But test positive for a specific antigen which affects the brain

[CareyOsborne]

7 hours ago, Wheatwacked said:

Then there is this. I think the increase in carbohydrate is mostly wheat flour. Calories that were formally nutrient dense are now empy calories that we need as a society to "fortify".  

"With westernisation however came an increase in the intake of refined carbohydrates and sugar in the Alaskan Inuit. Indeed, compared with the Inuit of Point Hope, the Inuit living in a boarding high school consumed more carbohydrates (48% vs 10% of total calories), less fat (39% vs 55% of total calories) and less protein (14% vs 35% of total calories)."

"Alaskan natives who had previously had just 1/18th the rate of death due to ischaemic heart disease in the mid-1950s had an identical rate of heart disease mortality by the mid-1980s compared with the USA. Importantly, one of the major dietary changes that occurred in the mid-1950s in Alaskan Inuit was an increase in the intake of carbohydrates and simple sugars."

"In the 1950s, only five diagnoses of diabetes had been made from eight hospitals serving Alaskan Inuit, ‘Five hospitals had never seen diabetes mellitus in an Eskimo’. More importantly, ‘Vital statistics reports showed 35 deaths due to diabetes in Alaska in the years 1919–1951, but none of these were in Eskimos’. In other words, prior to 1950, diabetes was virtually non-existent in the Alaskan Inuit."    Markedly increased intake of refined carbohydrates and sugar is associated with the rise of coronary heart disease and diabetes among the Alaskan Inuit

very interesting many thanks 

3 hours ago, knitty kitty said:

@CareyOsborne

Hi, I'm sorry you're having such problems.  

In Celiac Disease, malabsorption affects all the essential vitamins and minerals across the board.  

I had severe vitamin deficiencies in several vitamins, but the one vitamin deficiency that caused severe ataxia was Thiamine.

Anxiety, panic attacks, slurred speech, deep dark depression, and absence seizures were some of the symptoms of Thiamine deficiency that I experienced.  I also had difficulty walking and balance issues.

Thiamine deficiency symptoms can wax and wane.  A twenty percent increase of thiamine can produce an eighty percent increase in brain function and hence an improvement in symptoms.

The brain needs more Thiamine during physical exercise and during emotional stress.  During these times, more Thiamine is used and Thiamine levels drop worsening symptoms.

Medical professionals are undereducated in nutrition and do not recognize vitamin deficiency symptoms (outside of alcoholism).

Get checked for thiamine deficiency by your doctor before supplementing.  Vitamin supplements will be reflected in blood tests causing false results.  

Medical professionals can administer Thiamine Hydrochloride by IV.  Thiamine is nontoxic and safe even in high doses.  You could request this at A and E.  If Thiamine deficiency is not corrected promptly, the damage can be permanent.

The best way to test for you deficiency is to take Thiamine and look for improvement.  I had improvement within an hour.  I took over the counter Thiamine Hydrochloride supplements.  

The World Health Organization says to take 500 - 1500 mg/day for a week and look for symptom improvement. Thiamine supplementation should continue for several months to years.  

Other forms of Thiamine that help ataxia include Benfotiamine (sulbuthiamine), and Allithiamine (Tetrahydrofurfuryl disulfide ) and Thiamax (TTFD).

Helpful information...

https://www.healthline.com/nutrition/thiamine-deficiency-symptoms#basics

And...

https://m.youtube.com/watch?v=m1-dXJCYVIM&pp=ygUpVGhpYW1pbmUgZGVmaWNpZW5jeSBzeW1wdG9tcyBlb251dHJpaXRpb24%3D

 

I suggest you talk to your doctor  thiamine deficiency and getting it corrected as soon as possible.

This is really helpful thank you. Absence seizure, I will have to look up. thank you

[knitty kitty]

A couple of articles for you...

Epileptic manifestations and vitamin B1 deficiency

https://pubmed.ncbi.nlm.nih.gov/2044623

     "Sixteen of 50 consecutive neurological patients with a diagnosis of thiamine deficiency showed epileptic or epileptiform manifestations. A survey of the literature revealed only few reports on a possible relationship between epilepsy and thiamine deficiency. It appears that thiamine deficiency may provoke epileptic phenomena in those patients who have subclinical predisposition for seizures. The presence of irritative activity on electroencephalographic recordings in the patients may be a consequence of a vitamin B1 deficiency state. The possible pathophysiological mechanisms by which thiamine deficiency may contribute to seizure activity of the brain are discussed."

And...High Calorie Malnutrition as a cause of Thiamine deficiency in the modern diet...

https://austinpublishinggroup.com/nutrition-food-sciences/fulltext/ajnfs-v3-id1061.php

 

Edited May 16, 2023 by knitty kitty
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[CareyOsborne]

very interesting 

[Glutenparalysis]

I’m going through something very similar. I have no inclination to get up and move. If I force myself, it is really hard. I regularly go dancing and walking, but I’ve been bedridden for a month. People say the manifestation of “celiac ataxia” and “gluten paralysis” is varied and rare. It does seem to me that there is a commonality in our experiences. In the “staring into space“ I knew exactly what you mean because when your body is not moving, what else are you doing! I am in the UK, in the medical system here, as in many other countries, there is a reluctance to test and so diagnose. Ultimately, if gluten is a potent poison to our biochemistry, and the only solution is to eliminate it, the input of medical professionals is unnecessary and in fact deferment to them; that delays the elimination is a danger. As for the ‘you must carry on eating gluten’, how am I supposed to see a medical professional if I’m unable to even crawl…

[Scott Adams]

I'm sorry to hear this @Glutenparalysis, and welcome to the forum! Have you been diagnosed with celiac disease? If so, how long have you been gluten-free?

[CareyOsborne]

14 hours ago, Glutenparalysis said:

I’m going through something very similar. I have no inclination to get up and move. If I force myself, it is really hard. I regularly go dancing and walking, but I’ve been bedridden for a month. People say the manifestation of “celiac ataxia” and “gluten paralysis” is varied and rare. It does seem to me that there is a commonality in our experiences. In the “staring into space“ I knew exactly what you mean because when your body is not moving, what else are you doing! I am in the UK, in the medical system here, as in many other countries, there is a reluctance to test and so diagnose. Ultimately, if gluten is a potent poison to our biochemistry, and the only solution is to eliminate it, the input of medical professionals is unnecessary and in fact deferment to them; that delays the elimination is a danger. As for the ‘you must carry on eating gluten’, how am I supposed to see a medical professional if I’m unable to even crawl…

thank u. bad today will respond better but thank u 

[knitty kitty]

@CareyOsborne,

Do you have a Carbon Monoxide detector in your home?  

Carbon Monoxide poisoning can cause similar symptoms as Gluten Ataxia.  

A slow Carbon Monoxide leak can build up so subtly you don't notice the tell-tale rotten egg smell put in for safety.  

Try opening some windows or get outside and see if you feel better.

[Wheatwacked]

For your black thoughts, a high dose of vitamin D. I need to take 10,000 IU a day and have been since 2015.  Side effects are none.  My blood plasma is checked four times a year and since 2021 remains steady at 200 nmol/L.

Increasing your B vitamins involved in energy creation and transport will help. I  suggest start one give it a few days to see its effect and add the next.  They all work together and like in a factory if a worker is missing on the assembly line, production slows down.  It in conjunction with gluten free diet will turn off "fat storage mode" (gluten turns it on) and start to dump belly fat.  All are well within the Safe Tolerable Limit.  These are not exotic supplements. They are essential to our health and only available according to how much we eat. It starts working almost immediately. It works like ketosis, using fat for energy, but no need to restrict carbs.  You can tinker with these, but it is the combination of them in sufficient quantities that makes the difference.  This will increase your energy.  The idea that excercise will build your energy without fixing the nutrition problem is absurd.  If you don't have enough energy to do basic chores how will exercise help?  Nutrition first to create energy. then chores, and then exercise with leftover energy, which you will have.

Feed your Krebbs Cycle.

1. Vitamin B1 Thiamine 500 mg a day
2. Vitamin B3 Nicotinic Acid. 500 mg a day.  This will cause flushing and itching at first because it relaxes the capillaries increasing blood flow. It is not a health hazard and passes in a day or so.  You can buy No Flush vitamin B, but the point is to benefit from the  increased blood flow, so you would be wasting money.
3. Vitamin B5 Pantothenic Acid 500 mg. This is the vitamin that actually creates ATP from glucose in the mitochondria. 3 ATP for each glucose molecule.
4. Vitamin B12 1mg Essential in hemoglobin. Deficiency can cause pernicious anemia. Essential to glucose homeostasis.
5. 2 ounces of Cherry or Grape or Citrus Magnesium Citrate liquid (590 mg magnesium) in a big glass of ice water. Add real sugar to taste if you like for a quick boost.  The sugar is a quick source of glucose and glucose is the source of all of our energy. Even fat and protein are broken into glucose. This form of magnesium absorbs quickly and well.
6. Taurine 1000 mg.  Called a conditional essential amino acid meaning it becomes essential only in times of illness and stress , it is a powerful antioxident against ROS reactive oxygen species and taurine is used for energy production.Taurine also helps the body process bile acid and balance fluids, salts and minerals.  Taurine reduces oxidative stress in the eye.
7. Choline 500 mg or Phosphatidyl Choline 840 mg.  Choline is needed for gallbladder health and bile for digesting fats through the liver.

I hope it helps. It does me.