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Chris Trev

Gluten Sensitivity and Balance Problems

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I thought I would start by mentioning that I am not celiac (negative for several blood tests and negative for biopsy) however I am sensitive to gluten through gastro problems and I am due to see Prof. Marios in Sheffield in May for possible gluten ataxia.

I wanted to check my symptoms with people on the forum to see if anyone has experienced anything similar;

  • Sensation of being on a boat and feeling like the world is moving (like Mal Debarquement Syndrome)
  • Balance problems alleviate whilst in motion (like MdDS)
  • Brain fog and disorientation like being drunk
  • Ear fullness and ear crackling
  • One or both ears going bright red after ingesting gluten particularly in the form of beer

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15 hours ago, Scott Adams said:

Vertigo is a very common symptom of gluten sensitivity, and I had this as well as brain fog.  You might find this article interesting:

 

When you define your vertigo - would you describe it as a dizziness with the room spinning or balance problems where it feels like the floor is actually moving beneath you?

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Your description of walking on a boat is how I describe my ataxia. I also had brain fog so severe that I couldn't name a fork if you asked me what it was called. Have the doctors done a brain MRI? If your issues are from celiac that is impacting your nervous system you will have what are called UBOs on brain scan. They are similiar to the lesions caused by MS but without the demylination debris found with a spinal tap. My ataxia got severe enough to require me to use canes or walls to aid in my walking prediagnosis. It only took about six months for me to be able to walk unaided but I do still have a bit of residual impact and am very sensitive to even small amounts of CC. Don't go gluten free until all your celiac related testing is finished but I would advise giving the diet a couple months trial strictly even if those test results are negative. I hope you heal quickly and a physical therapist can help a great deal with speeding up the healing with balance issues.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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2 minutes ago, ravenwoodglass said:

Your description of walking on a boat is how I describe my ataxia. I also had brain fog so severe that I couldn't name a fork if you asked me what it was called. Have the doctors done a brain MRI? If your issues are from celiac that is impacting your nervous system you will have what are called UBOs on brain scan. They are similiar to the lesions caused by MS but without the demylination debris found with a spinal tap. My ataxia got severe enough to require me to use canes or walls to aid in my walking prediagnosis. It only took about six months for me to be able to walk unaided but I do still have a bit of residual impact and am very sensitive to even small amounts of CC. Don't go gluten free until all your celiac related testing is finished but I would advise giving the diet a couple months trial strictly even if those test results are negative. I hope you heal quickly and a physical therapist can help a great deal with speeding up the healing with balance issues.

I had a brain MRI over a year ago which wasn't specifically looking for signs of gluten ataxia - it was more just for reassurance as I was right at the beginning of my balance problems.

I have a further brain MRI planned in May and this is from a centre specific for gluten ataxia so they'll be looking at the specific areas that would be affected but in greater detail.

Did your boat like feelings resolve after the months of being gluten-free?

Thanks, it's reassuring to hear of someone who has had the same symptoms

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Just now, Chris Trev said:

I had a brain MRI over a year ago which wasn't specifically looking for signs of gluten ataxia - it was more just for reassurance as I was right at the beginning of my balance problems.

I have a further brain MRI planned in May and this is from a centre specific for gluten ataxia so they'll be looking at the specific areas that would be affected but in greater detail.

Did your boat like feelings resolve after the months of being gluten-free?

Thanks, it's reassuring to hear of someone who has had the same symptoms

The boat feeling did resolve but I do still have some residual balance issues. However I had ataxia impact from the time I was a child until my 40's. Glad to hear you are seeing someone that will be looking specifically for the UBOs. My neuro delayed my diagnosis by years by thinking my lesions were 'normal' when a spinal tap didn't come back positive for MS. It might be helpful to have the new doctors look at the MRIs from a year ago. It is shocking to me how many doctors are clueless when it comes to gluten ataxia. I should also mention that although doctors only test for two celiac related genes the gene I have, DQ9, has recently been recognized as a celiac related gene. If they do gene tests not having DQ2 or DQ8 doesn't firmly rule out celiac.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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12 minutes ago, ravenwoodglass said:

The boat feeling did resolve but I do still have some residual balance issues. However I had ataxia impact from the time I was a child until my 40's. Glad to hear you are seeing someone that will be looking specifically for the UBOs. My neuro delayed my diagnosis by years by thinking my lesions were 'normal' when a spinal tap didn't come back positive for MS. It might be helpful to have the new doctors look at the MRIs from a year ago. It is shocking to me how many doctors are clueless when it comes to gluten ataxia. I should also mention that although doctors only test for two celiac related genes the gene I have, DQ9, has recently been recognized as a celiac related gene. If they do gene tests not having DQ2 or DQ8 doesn't firmly rule out celiac.

That's good to know.

I have my MRI on a celiac disease as it was requested by an ENT consultant to take a look at but again this is someone who isn't looking in regards to gluten ataxia but I can mention it to them and also give it to the gluten ataxia centre I'll be dealing with.

I wasn't aware for a long time that there is more than just celiac disease which always confused me since I would have negative blood tests from a GP office for celiac disease but I could guarantee having gastro problems within almost 30 minutes by simply eating a sandwich with non-gluten-free bread. It's worrying how convinced local GPs and nurses are at a celiac blood test being negative when people could be causing their own CNS deterioration thinking that they can eat something that they're intolerant to!

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1 hour ago, frieze said:

Chris, have you had the complete celiac panel??

I haven't. Up until now I have only had the standard run of the mill celiac blood test that a GP would order. In May I'll be seeing a specialist in gluten ataxia who no doubt will run the complete panel.

Is it something you can order online for yourself?

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Check on all of the above for me as well. I get neuropathy and ataxia issues among my many symptoms. 

In my early 20s I had what I call "my fun house syndrome" my right body sensation felt 2" above  my left and I felt pronated  outward. Only sensation not literal. 

Boat sensation for me at 28 then 33 for me too. 33 was during my son pregnancy it was bad nausea too. It was not "normal morning sickness". I lost weight not gained and was on a Bratt diet first trimester as they thought it was viral on top of morning sickness. I had to sit 2 hours after eating to keep food down. I erupted in PUPPP rash after my daughter delivery 2 years prior. So I was apparently the mutant of my family who have typical pregnancies and easy labor/ deliveries. I was atypical and the only one who had c-sections.

After delivering my son is when I got what I know now was chronic brain fog and neuropathy started. My left leg would go numb and I use to hit it to try to wake it up. The brain fog lasted months. They told me to take good vitamins and when that failed to fix me I was prescribed xanax which also did not help alleviate the symptoms. I was then sent for a psych visit. It did have to do with my brain and nerves but that too was not the fix.

I went off gluten self induced at 38 as I regularly did not feel my big toes and my left upper arm altered shooting pain or numb, sometimes simultaneously at the same time. 

I was not diagnosed until 42.

Long road as I knew at 5 something was wrong with me, but just didn't know what. 

Edited by Awol cast iron stomach
One more thought

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On 2/25/2020 at 12:47 AM, Chris Trev said:

When you define your vertigo - would you describe it as a dizziness with the room spinning or balance problems where it feels like the floor is actually moving beneath you?

Yes, I felt like I was in a moving elevator when I wasn’t. 


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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On 2/24/2020 at 10:12 AM, Chris Trev said:

I thought I would start by mentioning that I am not celiac (negative for several blood tests and negative for biopsy) however I am sensitive to gluten through gastro problems and I am due to see Prof. Marios in Sheffield in May for possible gluten ataxia.

I wanted to check my symptoms with people on the forum to see if anyone has experienced anything similar;

  • Sensation of being on a boat and feeling like the world is moving (like Mal Debarquement Syndrome)
  • Balance problems alleviate whilst in motion (like MdDS)
  • Brain fog and disorientation like being drunk
  • Ear fullness and ear crackling
  • One or both ears going bright red after ingesting gluten particularly in the form of beer

This is just the craziest thing ever! same thing happened to me (25y/o female). symptoms were exacerbated right before having to go to the bathroom (diarrhea and/or very loose stools) I have been referred to pysch, vestibular therapy, neurologist all came back clear. My mom has MS so they were concerned but neuro confirmed not MS based on brain scan w/contrast.  no spinning of the room which is why vestibular therapist said not BPPV (benign positional proximal vertigo). Diagnosed subclinical hypothyroid and seeing an integrative endocrinologist that thinks this is all stemming from inflammation in my gut. movement sensations are gone for now but sometimes still get brain zaps or feel light headed/intense anxiety. i am off gluten per endocrinologist recommendation and have had 0 gut issues since. Still on the journey to figuring out the entire picture and what is wrong! Starting to think what if this entire time it was celiac....looking back have also had acid reflux and lots of hiccups. 

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Just thought I would share these articles I found. 

This one is about that mal debarquement or vertigo feelings as an early symptom of thiamine deficiency....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6082353/

 

This is a study that looks at "Thiamin Status During the Third Trimester of Pregnancy and Its Influence on Thiamin Concentrations in Transition and Mature Breast Milk" shows that some women don't get enough thiamine at that time.  

https://pubmed.ncbi.nlm.nih.gov/15230996/

 

This study, Thiamin Status During Pregnancy, says...

"The occurrence of deficient thiamin status demonstrated an increase with number of previous pregnancies."

https://pubmed.ncbi.nlm.nih.gov/7399809/

 

Here's a study about morning sickness and thiamine deficiency.

https://academic.oup.com/qjmed/article/106/12/1123/1632896

 

Thiamine and Hashimoto's Thyroiditis: A Report of Three Cases

https://pubmed.ncbi.nlm.nih.gov/24351023/

 

Thiamine deficiency and anxiety.....

"For anxiety, thiamine has been used successfully at doses of 250 mg/day to treat patients with anxiety disorders, including symptoms manifesting as chronic fatigue, insomnia, nightmares, anorexia, nausea and vomiting, diarrhea or constipation, chest and abdominal pain, depression, aggression, headache, diaphoresis, and fevers of unknown origin. Among over 200 subjects, successful responders had deficient RBC transketolase which normalized in 73% of the subjects and led to disappearance or great clinical improvement in most of the symptoms."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3046018/#!po=10.0000

 

Optic neuropathy from thiamine deficiency in a patient with ulcerative colitis

https://link.springer.com/article/10.1007/BF00142696

 

Thiamine deficiency symptoms....

https://www.healthline.com/nutrition/thiamine-deficiency-symptoms#:~:text=An abnormally slow heart rate,in increased fatigue and dizziness.

 

Can't be that simple, can it?  

I hope this helps.  

 

14 hours ago, elisehart9 said:

 

 

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