New Here - Gluten Ataxia Questions

[AllieB27]

Hi Everyone,

 

I am new to the gluten free world and just starting to sort some things out. For the last year or so, I've been dealing with some troublesome symptoms that have lead to a fair amount of health anxiety. I have had an MRI, a CT scan of my sinuses, and blood work, all which leads to a "normal" and "healthy" diagnoses from my doctor. They have told me that my symptoms are caused by lack of sleep, stress, and being a breastfeeding mom. But, I don't feel THAT stressed and I am now getting 7 to 8 hours of sleep a night, so I feek like that is a pretty healthy amount (compared to the 5 hours of sleep a night I was getting when I had a newborn). I am 26 years old, 5'2 and 130 lbs. I do have a history of hormonal, complex migraines, which I am also wondering have anything to do with food sensitivites - now that I am researching.

 

My most common symptoms include:

Tingling hands and feet

Some facial/head tingling

Pin Prick tingling in other areas (like knee or shin area)

Sinus pressure around right eye

Vision changes

Twitching muscles

Joint pain (shoulder/hips)

Muscle aches and "charlie horses"

Feelings of Anxiety (mostly over the symptoms)

 

I had an "aha" moment after going out for pizza with my family last week.. I woke up in the middle of the night feeling like my entire body was vibrating, even though I was very aware that I was not moving. The next morning, I attributed it to a weird dream and went on with my day, but had left over pizza for lunch. Sure enough, within a few hours of eating the pizza, I felt the same creepy "vibrate-y" sensation again.

 

A month or so prior, I had started the Whole30 diet (a Paleo type eating plan) to try to see if that would help, but I only made it less than two weeks on the diet before I gave in and had a beer and some pizza. But in that two weeks I felt great and a lot better.

 

Which leads me to the conclusion.. the symptoms could be caused, at least in part, by some sort of food sensitivity. I also know that some of the symptoms could be from breastfeeding, which I've been doing for 18 months now.

 

Has anyone out there had a similar experience? And how often does a food sensitivity begin post partum? Do breastfeeding hormones have anything to do with a food sensitivity?

 

I've tried cutting out the gluten, but I have noticed I still get the buzzing feeling after eating (not nearly to the same extreme) recently. I'm not sure if this is because I am hyper aware and watching for the sensation, or if it is because it's actually happening.

 

I am not sure where to go from here or what my next step should be, but I am open to any and all ideas to feel better.

 

Thank you,

Allie

[IrishHeart]

Gluten ataxia symptoms are not quite the ones you describe here..But, you could be having issues with gluten, yes!

Migraines are a gluten-related problem.

 

I had it and I had serious balance problems,my muscles started to atrophy, I had coordination problems,  I banged into walls, fell, had trouble focusing my eyes, double vision, vertigo, parasthesia, serious cognitive issues, etc. 

 

Open Original Shared Link

 

 

Before you continue to cut out gluten, you should  stay on it and  have a celiac panel done. Pregnancy can trigger celiac in predisposed people.

Tests are only accurate if you are consuming gluten.

[Kamma]

Hello Allie,

 

The twitching in your muscles and tingling and tingling in your hands and feet is called "peripheral neuropathy" and is common in gluten ataxia.  Some studies that you can read on this are: 

 

Autonomic neuropathy and coeliac disease

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Sensory ganglionopathy due to gluten sensitivity.

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Your muscle aches and joint pains sound like fibromyalgia and while there has been no exclusive link between celiac and fibromyalgia, many FM patients experience some relief from their symptoms on a gluten free diet. Jane Anderson, About. Com Celiac writes:

 

 "It's not uncommon to suffer from fibromyalgia or chronic fatigue syndrome (CFS) in addition to Open Original Shared Link or Open Original Shared Link. And while some physicians still don't acknowledge the connection (and research hasn't proven it), people with fibro or CFS increasingly are Open Original Shared Link in an effort to ease their symptoms.

Does it work? In many cases, yes, while in others, no."

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Anxiety can also be a common extrainestinal symptom of gluten ataxia and celiac.  There's a recent study (2012) that examines the linkages here:

 

Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity

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As Irish Heart says, migraines are also quite common in celiac and gluten ataxia.

 

At present the best measurement of diagnosis of gluten ataxia is a strict gluten free diet.  There is no current test for it (the current test is strictly for celiac: intestinal manifestations  and dermatology  manifestations .respectively.  There is evidence that symptoms caused by gluten ataxia take a longer time to resolve so if you go gluten free and don't see results within a few weeks, don't give up!  It could take up to a few months before you start noticing any changes.

 

I hope this helps,

 

Kind regards.

[AllieB27]

Thank you so much for your responses and the information you shared. I appreciate it!

[IrishHeart]

Thank you so much for your responses and the information you shared. I appreciate it!

 here is some more  about neuro symptoms and gluten ....but I hate to overwhelm you, hon

 

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[Kamma]

Thank you so much for your responses and the information you shared. I appreciate it!

 

You're welcome.    When you first start out examining everything it can seem daunting at first.  But as time goes by, and the more knowledgeable you become and tuned into your body's response to different foods (if you are going to pursue the food sensitivity angle) things will start 'clicking' for you.  Your body is your best guide.  

 

Keep me posted on how your progress comes along.  If you want to read more about gluten ataxia, the leading researcher in the field right now is Dr. Marios Hadjivassilliou.  You can google his name and it should pull up some of his research.

 

Kind regards.

Kamma

[IrishHeart]

You're welcome.    When you first start out examining everything it can seem daunting at first.  But as time goes by, and the more knowledgeable you become and tuned into your body's response to different foods (if you are going to pursue the food sensitivity angle) things will start 'clicking' for you.  Your body is your best guide.  

 

Keep me posted on how your progress comes along.  If you want to read more about gluten ataxia, the leading researcher in the field right now is Dr. Marios Hadjivassilliou.  You can google his name and it should pull up some of his research.

 

Kind regards.

Kamma

 

 

yes,and  the articles I linked to discusses Dr. Hadjivassilliou's research.

I have typed his name out so many times on here and have tried to memorize  the spelling and I think  I am going to just start writing"Dr. H."

 .