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Gluten Ataxia Neuropathy Neurological Presentation


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#1 Gutsy Girl

 
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Posted 13 December 2010 - 09:22 PM

Your Brain on Gluten

This is interesting. ..gluten can actually cause UBO's (unidentified bright objects) on the brain that show up in MRI scans. It can also cause "pins and needles" or "crawly-like" feelings all over the body...something a lot of us struggle with. - PH

Your brain on gluten: Should you lay off the gluten before it's too late?

There is reasonable evidence of neurological problems in Celiac disease even those well treated on a gluten-free diet should undergo periodic neurological screening. Peripheral neuropathy is found in almost half of people with celiac disease. Previously, neurological complications in Celiac disease were reported to be as high as 36% or more than a third.

Some unexplained neurological problems are present but not recognized by the patient or their doctor in many patients and some have several problems. Unfortunately, since brain imaging is not routinely done or recommended in those who are newly diagnosed with Celiac disease we don't really know how high these numbers may be really be. More staggering is the fact that we are still learning about people who fail to meet diagnostic criteria for Celiac disease but are being found to have gluten related neurological problems that respond to a gluten-free diet.

The symptoms of neuropathy are paresthesia (numbness) or dysthesia (burning, tingling, heaviness, "pins and needles" sensation"). Many of my patients also describe hypersensitivity of their skin such that they do not like air blowing on them or their children or spouses against their skin. Some admit to "bug crawling" sensation on their skin, something called vermiculation in medical terms but rarely asked about or given much thought by most doctors.

Odd muscle movements under the skin that some call a "bag of worms" medically known as fasiculations are also very common but dismissed by many doctors. My wife, a physician with Celiac disease, actually had these occur while undergoing an EMG (electromyleograph, recording of muscle activity by placing needle electrode into the muscle) exam by an older neurologist. Despite observing these occurring visually and the monitor showing "static like noise" the neurologist dismissed them as "normal".

Many patients with Celiac disease also have what the radiologists and neurologists call "UBO's" on MRI exams of the brain. These unidentified bright objects (think UFO) are white spots that show up on images of the brain. When found in certain locations of the brain they are highly suggestive of multiple sclerosis (multiple scarring spots in the brain). However, though many people with Celiac disease have MS like symptoms and these symptoms often respond to a gluten free diet when started early enough, the UBO's seen on MRI of the brain are typically not in the classic areas of MS. Instead it is common to find them in areas of the brain associated with migraines or balance difficulty (ataxia).

Personally and professionally I have observed all of the neurological complications of Celiac disease and most of them I have also noted in patients in whom I have not been able to confirm Celiac disease but who have what I believe are objective signs and/or genetic risk for gluten sensitivity. I have patients with MS-like symptoms, chronic unexplained neuropathy, headaches, attention difficulties, autistic behaviors and developmental delays who have responded to gluten-free diet but if they had listened to doctors who maintained such a "restrictive, expensive, hard to follow" diet should only be "imposed" on those with a established diagnosis of Celiac disease.

If you have neurological problems get testing for Celiac disease before starting a gluten-free diet. If you test negative for Celiac disease, make sure they test you for the complete HLA DQ genetics that includes the high-risk white blood cell patterns DQ2 and DQ8 for Celiac disease AND get your Celiac disease blood tests include IgG and IgA gliadin antibodies. If your blood tests, including gliadin IgA and IgG antibodies, are negative or normal then consider stool testing for gliadin antibodies in the stool ($99, www.enterolab. com).

The evidence continues to accumulate, though often ignored or missed, that gluten is toxic to some people's brains, even if they do not have Celiac disease. If you do have Celiac disease it is likely you already have neurological problems and may be at risk despite being on a gluten-free diet.

Borrowing from the old advertisement against drug abuse "this is your brain on drugs" maybe we should be getting the word out "this is your brain on gluten". Despite your test results, consider a trial of gluten-free diet after you have your testing done if you have unexplained or unresponsive neurological problems. You owe to your brain. Like my seven-year-old son said to one of our friends, "maybe you should lay off the gluten".

Copyright © 2008, The Food Doc, LLC, All Rights Reserved.
www.thefooddoc.com
http://thefooddoc.bl...ou-lay-off.html
  • 2
Chronic pain, Leg Sx's. LD, ADHD, Depression, GAD. Fibromyalgia, Asthma, Lactose Intol, 20+ Foot Fx, Migraines, Car accident 07 -> LBP, etc. Neuropathy now believed celiac disease-related. **2009 - VERY ill, unable to eat/sleep, Big D, Depression, Fainting, Vision Probs, Myoclonic jerk, Coord + Balance Probs, Heart Palp, Breathing Probs, Extreme Pain, etc. Hospitalized, self-diagnosed gluten issues. Slow recovery since 09, still many IBS + gluten ataxia probs.**
Lactose Free - Childhood (or use Lactaid), GFD 07-28-2009, Almond Free 05, Preservative Free 09, Soy Free 10, Millet Free 10, Potato Free 10, still reacting to many foods.

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#2 ravenwoodglass

 
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Posted 14 December 2010 - 03:45 AM

Good article. I would have been diagnosed years before I was if my neurologist had not been so clueless about the UBOs. His response to them after I had a follow up spinal tap to rule out MS was 'they don't mean anything, here have a prozac'. He was convinced that I wanted to be sick even though I had lost reflexes, could barely think, could no longer read and showed a completely flat line on the electromylogram they did on my legs. I am still furious with him, he cost me many wasted years when those lesions are actually diagnostic of celiac antibodies attacking the brain. Doctors place far to much faith in the blood test and never even bothered to tell me to try the diet although I was a textbook case with symptoms that screamed celiac.
  • 1
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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#3 pathwaytohealing

 
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Posted 14 December 2010 - 08:09 AM

Hello everyone,
I've learned so much while reading through the forum today. Thank you!

Maybe my story will help someone else.I am now 66, but my problem started in my 40's. At first it looked like Chronic Fatigue syndrome and a candida problem. Allergy meds and then homepathic kept me out of bed and restored my energy level.

About 5 years ago I started having mild diarrhea off and on and a pale stool. I thought it was all the result of a candida problem. Since I could not find a doctor who would address these symptoms, I just kept taking Probiotics and eating more raw vegetables and no sugar. But I have always loved bread...that was not one of the things I stopped eating.

Two years ago I started having tremors of my upper body which showed up in head-shaking. I found an alternative/medical doctor who was willing to treat me with health supplements rather than drugs.

He was good about listening to what I had to say. When he told me he had no idea what was causing the tremors, I told him what I found online at "Misdiagnosis.com".

I'm sure God helped me find this info. I'm always asking him for a pathway to healing. I'll take an instant miracle or a change in diet. This is what I found. Celiac Disease can cause depletion of calcium, causing aching legs as well as causing tremors. The doctor began blood tests and found that I had a serious depletion of Vit. D and Calcium. He prescribed 50,000Iu's of Vit. D plus calcium.

I started taking 1200 mg calcium with 800IU vit d3 every time a tremor would start. It worked. My doctor was not convinced it was Celiac. he thought it was just wheat allergy, so he recommended that I cut wheat out of my diet and see what happened after 9 months to a year.
After nine months, the tremors were nearly gone and I was taking 2 cal/vitc3 a day as compared to 5 or six. Also, no diarrhea or pale stool.

Then my doctor left his practice for medical reasons in August. About that time I took his advice and tried eating a little wheat for a couple of weeks. Bingo! Tremors are back with diarrhea and pale stool plus what may be an infection in my colon.

Now I'm trying to get in to see a new doctor whom my former doctor said might lean toward alternative supplements, homeopathic, etc. The saga continues and I'm praying that a pathwaytohealing will come my way once again. Also praying that my new doctor will be open-minded as far as my remaining drug-free and that my attitude will not drive her crazy.

After not being able to find a medical doctor to help with Chronic Fatigue or candida all these years, I'm pretty much into self-diagnosis. I hope this info blesses someone...
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#4 Gutsy Girl

 
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Posted 14 December 2010 - 07:29 PM

Good article. I would have been diagnosed years before I was if my neurologist had not been so clueless about the UBOs. His response to them after I had a follow up spinal tap to rule out MS was 'they don't mean anything, here have a prozac'. He was convinced that I wanted to be sick even though I had lost reflexes, could barely think, could no longer read and showed a completely flat line on the electromylogram they did on my legs. I am still furious with him, he cost me many wasted years when those lesions are actually diagnostic of celiac antibodies attacking the brain. Doctors place far to much faith in the blood test and never even bothered to tell me to try the diet although I was a textbook case with symptoms that screamed celiac.



It is amazing how our stories are almost IDENTICAL - you're my twin I think. LOL. :) Although I don't look like a rooster (though I assume you don't either, but if you do we can chalk that up to celiac disease too, right?).....Just joking.

Someday, when I have the guts (pun intended), I may pay a FRIENDLY (ha!) visit to my neuro-quack and let him have a PIECE OF MY MIND (pun again intended) and hope he chokes on it (no jokes there).
  • 1
Chronic pain, Leg Sx's. LD, ADHD, Depression, GAD. Fibromyalgia, Asthma, Lactose Intol, 20+ Foot Fx, Migraines, Car accident 07 -> LBP, etc. Neuropathy now believed celiac disease-related. **2009 - VERY ill, unable to eat/sleep, Big D, Depression, Fainting, Vision Probs, Myoclonic jerk, Coord + Balance Probs, Heart Palp, Breathing Probs, Extreme Pain, etc. Hospitalized, self-diagnosed gluten issues. Slow recovery since 09, still many IBS + gluten ataxia probs.**
Lactose Free - Childhood (or use Lactaid), GFD 07-28-2009, Almond Free 05, Preservative Free 09, Soy Free 10, Millet Free 10, Potato Free 10, still reacting to many foods.

#5 Gutsy Girl

 
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Posted 14 December 2010 - 07:35 PM

Hi pathway...

Nice to meet you. Glad you came onboard. :) I think more people need to know not only about Celiac Disease and Gluten Intolerance/Sensitivity, but also about gluten ataxia...as it's probably the only known reversible or at least non-progressive form of ataxia if gluten is eliminated 100%. I think there are lots of people out there suffering from the neuro effects of gluten's havoc that just haven't been presented with this information yet. Doctors...are even more clueless. So it's our duty to get the word out. :)

I know you'll find a lot of support here - I already have, and my "attendance" is somewhat sporadic. :)
  • 0
Chronic pain, Leg Sx's. LD, ADHD, Depression, GAD. Fibromyalgia, Asthma, Lactose Intol, 20+ Foot Fx, Migraines, Car accident 07 -> LBP, etc. Neuropathy now believed celiac disease-related. **2009 - VERY ill, unable to eat/sleep, Big D, Depression, Fainting, Vision Probs, Myoclonic jerk, Coord + Balance Probs, Heart Palp, Breathing Probs, Extreme Pain, etc. Hospitalized, self-diagnosed gluten issues. Slow recovery since 09, still many IBS + gluten ataxia probs.**
Lactose Free - Childhood (or use Lactaid), GFD 07-28-2009, Almond Free 05, Preservative Free 09, Soy Free 10, Millet Free 10, Potato Free 10, still reacting to many foods.

#6 ravenwoodglass

 
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Posted 15 December 2010 - 02:59 AM

It is amazing how our stories are almost IDENTICAL - you're my twin I think. LOL. :)


Well we do have the same haircut and haircolor. At least before malnutrition turned mine mostly white. LOL
I do wish more neuros and psychologists and psychiatrists were more knowledgeable about the effects on the brain and nervous system. While doing research for a paper recently I found a couple studies that stated that folks, including children, with depression and anxiety who don't do better on a drug regime should be evaluated for celiac. So much better than just bouncing us through drug after drug and layering them on. I suspect there are a lot of us, especially here in the US, that would get their lives and sanity back if doctors would close the drug reference books and prescribe a trial of the diet.
  • 1
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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#7 Gutsy Girl

 
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Posted 15 December 2010 - 07:40 PM

Ravenwoodglass,
I could not agree more!
  • 0
Chronic pain, Leg Sx's. LD, ADHD, Depression, GAD. Fibromyalgia, Asthma, Lactose Intol, 20+ Foot Fx, Migraines, Car accident 07 -> LBP, etc. Neuropathy now believed celiac disease-related. **2009 - VERY ill, unable to eat/sleep, Big D, Depression, Fainting, Vision Probs, Myoclonic jerk, Coord + Balance Probs, Heart Palp, Breathing Probs, Extreme Pain, etc. Hospitalized, self-diagnosed gluten issues. Slow recovery since 09, still many IBS + gluten ataxia probs.**
Lactose Free - Childhood (or use Lactaid), GFD 07-28-2009, Almond Free 05, Preservative Free 09, Soy Free 10, Millet Free 10, Potato Free 10, still reacting to many foods.

#8 anabananakins

 
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Posted 17 December 2010 - 07:44 PM

Your Brain on Gluten



Copyright © 2008, The Food Doc, LLC, All Rights Reserved.
www.thefooddoc.com
http://thefooddoc.bl...ou-lay-off.html


Really interesting article. The reason I went strictly gluten free despite a lack of diagnosis was because of research I'd read that showed people didn't necessarily test positive to celiac yet still had gluten related neuro problems. I think I could've lived with the other symptoms, but the thought of actual brain damage terrified me. The symptoms have resolved, I really hope that the damage halts. I think the extreme GI symptoms I get now are a blessing, they stop me risking contamination.
  • 0

#9 TwitchyMcLurcherson

 
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Posted 13 March 2011 - 06:27 PM

Hi pathway...

Nice to meet you. Glad you came onboard. :) I think more people need to know not only about Celiac Disease and Gluten Intolerance/Sensitivity, but also about gluten ataxia...as it's probably the only known reversible or at least non-progressive form of ataxia if gluten is eliminated 100%. I think there are lots of people out there suffering from the neuro effects of gluten's havoc that just haven't been presented with this information yet. Doctors...are even more clueless. So it's our duty to get the word out. :)

I know you'll find a lot of support here - I already have, and my "attendance" is somewhat sporadic. :)



My ataxia and associated neuro symptoms have only increased, so being gluten-free hasn't helped them (granted, this is only after being gluten-free again for three months... I had to do a gluten challenge before my endoscopy). I wish it was reversible for me! But perhaps I have another disorder that isn't related (they'll be checking again in a year to see if it's progressed to clinically definite MS). Or maybe it's caused by my severe Vitamin D deficiency or a multivitamin deficiency- I'm loading up on vitamins now, so we'll see if I'm doing better in 6-8 weeks.
  • 0

#10 ravenwoodglass

 
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Posted 14 March 2011 - 03:40 AM

My ataxia and associated neuro symptoms have only increased, so being gluten-free hasn't helped them (granted, this is only after being gluten-free again for three months... I had to do a gluten challenge before my endoscopy). I wish it was reversible for me! But perhaps I have another disorder that isn't related (they'll be checking again in a year to see if it's progressed to clinically definite MS). Or maybe it's caused by my severe Vitamin D deficiency or a multivitamin deficiency- I'm loading up on vitamins now, so we'll see if I'm doing better in 6-8 weeks.


Hang in there. It was about 6 months before I saw a noticeable differece. I did have to avoid gluten grain derived alcohols and vinegars also and am very sensitive to CC so be as strict as is humanly possible. It takes time for the nervous system to heal. For me it was about 2 years before I was fully healed but as I said I did notice a great difference in six months, I was able to then put away my canes but it was 2 years before my reflexes returned and I found I could dance or work on a ladder again.
  • 0
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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#11 frieze

 
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Posted 14 March 2011 - 08:45 AM

My ataxia and associated neuro symptoms have only increased, so being gluten-free hasn't helped them (granted, this is only after being gluten-free again for three months... I had to do a gluten challenge before my endoscopy). I wish it was reversible for me! But perhaps I have another disorder that isn't related (they'll be checking again in a year to see if it's progressed to clinically definite MS). Or maybe it's caused by my severe Vitamin D deficiency or a multivitamin deficiency- I'm loading up on vitamins now, so we'll see if I'm doing better in 6-8 weeks.

what is your vitamin regimen? and you might want to try CoQ10....good luck
  • 0

#12 blueshabooMoon

 
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Posted 14 August 2011 - 05:30 PM

It is amazing how our stories are almost IDENTICAL - you're my twin I think. LOL. :) Although I don't look like a rooster (though I assume you don't either, but if you do we can chalk that up to celiac disease too, right?).....Just joking.

Someday, when I have the guts (pun intended), I may pay a FRIENDLY (ha!) visit to my neuro-quack and let him have a PIECE OF MY MIND (pun again intended) and hope he chokes on it (no jokes there).

Thanks for load of info on ataxia above post, neurologists have worse bedside manner of any Docs [downright mean, arrogant, condenscending, belittle you],, brings to mind an episode of the Golden Girls when Dorothy finally gets diagnosed with Epstein Barr Virus and tells off her original doctor who said she was nuts and wanted to find something wrong and be sick. Terri
  • 0

#13 Breaking Free

 
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Posted 11 January 2013 - 09:58 AM

Your Brain on Gluten

This is interesting. ..gluten can actually cause UBO's (unidentified bright objects) on the brain that show up in MRI scans. It can also cause "pins and needles" or "crawly-like" feelings all over the body...something a lot of us struggle with. - PH

Your brain on gluten: Should you lay off the gluten before it's too late?

There is reasonable evidence of neurological problems in Celiac disease even those well treated on a gluten-free diet should undergo periodic neurological screening. Peripheral neuropathy is found in almost half of people with celiac disease. Previously, neurological complications in Celiac disease were reported to be as high as 36% or more than a third.

Some unexplained neurological problems are present but not recognized by the patient or their doctor in many patients and some have several problems. Unfortunately, since brain imaging is not routinely done or recommended in those who are newly diagnosed with Celiac disease we don't really know how high these numbers may be really be. More staggering is the fact that we are still learning about people who fail to meet diagnostic criteria for Celiac disease but are being found to have gluten related neurological problems that respond to a gluten-free diet.

The symptoms of neuropathy are paresthesia (numbness) or dysthesia (burning, tingling, heaviness, "pins and needles" sensation"). Many of my patients also describe hypersensitivity of their skin such that they do not like air blowing on them or their children or spouses against their skin. Some admit to "bug crawling" sensation on their skin, something called vermiculation in medical terms but rarely asked about or given much thought by most doctors.

Odd muscle movements under the skin that some call a "bag of worms" medically known as fasiculations are also very common but dismissed by many doctors. My wife, a physician with Celiac disease, actually had these occur while undergoing an EMG (electromyleograph, recording of muscle activity by placing needle electrode into the muscle) exam by an older neurologist. Despite observing these occurring visually and the monitor showing "static like noise" the neurologist dismissed them as "normal".

Many patients with Celiac disease also have what the radiologists and neurologists call "UBO's" on MRI exams of the brain. These unidentified bright objects (think UFO) are white spots that show up on images of the brain. When found in certain locations of the brain they are highly suggestive of multiple sclerosis (multiple scarring spots in the brain). However, though many people with Celiac disease have MS like symptoms and these symptoms often respond to a gluten free diet when started early enough, the UBO's seen on MRI of the brain are typically not in the classic areas of MS. Instead it is common to find them in areas of the brain associated with migraines or balance difficulty (ataxia).

Personally and professionally I have observed all of the neurological complications of Celiac disease and most of them I have also noted in patients in whom I have not been able to confirm Celiac disease but who have what I believe are objective signs and/or genetic risk for gluten sensitivity. I have patients with MS-like symptoms, chronic unexplained neuropathy, headaches, attention difficulties, autistic behaviors and developmental delays who have responded to gluten-free diet but if they had listened to doctors who maintained such a "restrictive, expensive, hard to follow" diet should only be "imposed" on those with a established diagnosis of Celiac disease.

If you have neurological problems get testing for Celiac disease before starting a gluten-free diet. If you test negative for Celiac disease, make sure they test you for the complete HLA DQ genetics that includes the high-risk white blood cell patterns DQ2 and DQ8 for Celiac disease AND get your Celiac disease blood tests include IgG and IgA gliadin antibodies. If your blood tests, including gliadin IgA and IgG antibodies, are negative or normal then consider stool testing for gliadin antibodies in the stool ($99, www.enterolab. com).

The evidence continues to accumulate, though often ignored or missed, that gluten is toxic to some people's brains, even if they do not have Celiac disease. If you do have Celiac disease it is likely you already have neurological problems and may be at risk despite being on a gluten-free diet.

Borrowing from the old advertisement against drug abuse "this is your brain on drugs" maybe we should be getting the word out "this is your brain on gluten". Despite your test results, consider a trial of gluten-free diet after you have your testing done if you have unexplained or unresponsive neurological problems. You owe to your brain. Like my seven-year-old son said to one of our friends, "maybe you should lay off the gluten".

Copyright � 2008, The Food Doc, LLC, All Rights Reserved.
www.thefooddoc.com
http://thefooddoc.bl...ou-lay-off.html

Hello...I am new today. Just want to say that I am very excited about finding this link. I am 54 this month and have lived with chronic difficulties for most of my life. I am working on being gluten and wheat free now for over a week. Puzzle pieces are finally coming together. Very exciting to have hope that maybe my quality of life can improve....and also for my husband.
  • 0

#14 Celiac Mindwarp

 
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Posted 11 January 2013 - 11:02 AM

Hi Breaking Glass
Glad you found us here. Isn't it great when those puzzle pieces start to come together? That is exactly how I described it a few months ago.

Wel come on in, ask lots of questions, rant if you need to. Maybe start a new thread and tell us your story if you'd like to.

Just one thing, if you want to be tested, blood tests and or endoscopy, you will need to be eating gluten, otherwise you may get false negatives. That said, many here have self diagnosed or have non celiac gluten intolerance, which won't show up anyway. I am halfway, diagnosis of ncgi, cannot rule out celiac. The longer you are off gluten, the harder it is sometimes to go back on for the tests. You obviously can go gluten-free without tests, but worth knowing to help you decide

The folks here are just amazing.

Good luck on your healing journey
  • 0
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#15 Takala

 
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Posted 11 January 2013 - 12:01 PM

Hello...I am new today. Just want to say that I am very excited about finding this link. I am 54 this month and have lived with chronic difficulties for most of my life. I am working on being gluten and wheat free now for over a week. Puzzle pieces are finally coming together. Very exciting to have hope that maybe my quality of life can improve....and also for my husband.


Try doing internet searches on gluten intolerance at PubMed using the name of Dr. Mario Hadjivassiliou, who is in the UK and who has studied older people with "unexplained" ataxia and found them to have gluten antibodies (and undiagnosed gluten "problems" or celiac.)

I didn't comment on this thread from 2010, but I just wanted to say that since the time I was struggling (and ultimately failed) to become properly officially diagnosed during the late 1990's - about year 2002, a lot has changed in the American medical research world regarding celiac, gluten intolerance, and neurological symptoms, ataxia, and brain damage being acknowledged as a possible symptom. It is now possible, and not thought of as "fringe theory." <_< At the time I was stuck with the Neurologist from Hell™ and finally got a brain scan showing actual brain damage, and another showing bone loss/spinal problem, this doctor actually kept insisting that I did not and could not have any sort of disease process going on regarding whether or not I consumed grains, I was told that I was making up my symptoms (incredible, how the hell do you make up brain damage visible on an MRI, c-spine damage, and nerve damage resulting in lack of feeling/balance problems which kept being mistaken for MS ?) and that my diet had nothing to do with this. At that time, the link between leaky gut, inflammation, and certain kinds of arthritis and diet, especially a grain-heavy diet, :o was also considered "fringe theory." :angry:

I had done a tremendous amount of internet and library/bookstore research by 2003, and was not about to be deterred from adapting a new, gluten free diet that resulted in my symptoms lessening.

My point: Do not be scared off by the celiac/glutenintolerant researchers saying that it is difficult to recover from ataxia and gluten neuropathy, it is possible, but it takes a long time, (not just a few weeks, if it is a lot of damage) and one has to be stricter than most with avoiding gluten cross contamination. ALSO, one must be aware that sometimes, in spite of our best efforts at following instructions (keep eating it until the test shows the gut damage :ph34r: or hell freezes over, whichever happens first <_< ) we just don't test out normally and easily as "celiac," or otherwise, we'd have been diagnosed a long time ago. This does not mean that we cannot be free to then eat as we have to do, to regain our health.
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