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Mermaid's Mom

Wish us luck!! Trying for Gluten Ataxia Diagnosis

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So as many of you might know at only 6 weeks Gluten Free we were shocked to see how many Neurological Issues were resolved for our daughter.  It was shocking and amazing.  We quickly began to realize that the difficulty swallowing, the Vertigo, the sensory issues were ALL Gluten related.

Now in the last 2 weeks it all slipped away and she is almost entirely back to the way she was before we went Gluten Free.

We have a pretty good idea why and are taking the steps to remedy it.

BUT...it struck me that (for HER sake and the sake of her long term medical records)  I need to get the Gluten Ataxia recognized.  I realize now how fragile her health is and how hard she will have to fight to STAY healthy.  And worse - potentially EVERY cross contamination will take her out for weeks and make her employment opportunities shaky and vulnerable.

My Dr. agrees and is sending us to the McMaster Neurological Department (they are cutting edge, up on all that is new etc) to see if they are willing to work with us.  She just put the referral in so I have no idea what will come from it.

It my result in nothing?  Or she may get a Gluten Ataxia diagnosis?  I'm not sure but it is worth fighting for.

 

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4 minutes ago, Jmg said:

You may find these interesting, they're from Professor Marios Hadjivassiliou, a leading expert on gluten ataxia:

http://www.acnr.co.uk/pdfs/volume2issue6/v2i6reviewart2.pdf

 

Best of luck helping your daughter :)

Oh I had heard his name and read some stuff about him but hadn't come across this video!  Thanks!!

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On 4/26/2017 at 6:49 PM, Mermaid's Mom said:

BUT...it struck me that (for HER sake and the sake of her long term medical records)  I need to get the Gluten Ataxia recognized.  I realize now how fragile her health is and how hard she will have to fight to STAY healthy.  And worse - potentially EVERY cross contamination will take her out for weeks and make her employment opportunities shaky and vulnerable.

My Dr. agrees and is sending us to the McMaster Neurological Department (they are cutting edge, up on all that is new etc) to see if they are willing to work with us.  She just put the referral in so I have no idea what will come from it.

It my result in nothing?  Or she may get a Gluten Ataxia diagnosis?  I'm not sure but it is worth fighting for.

 

I hope the new doctor is able to help. I had ataxia from childhood and by the time I was diagnosed almost 40 years later was dependant on canes or walls to walk and electromylograms on my right leg were a flat line.  I did recover enough to be able to function normally but it took time. Your daughters response to the diet is great and she should take much less time to heal than I did.  If needed a physical therapist can be quite helpful with any residual balance issues.

Her response to any CC is not unusual.  It may lessen in time though. She has you to help her learn what she needs to do to be safe and I am sure you will do a great job at that. By the time she has to worry about employment or moving out and going to college she will have the capability to keep her safe and glutening to a minimum.


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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