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Anyone Have Chiari Malformation And Does It Flare When You Get Glutened?

Not crazy

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Not crazy Rookie
Not crazy
Posted

I was diagnosed with Chiari Malformation in Nov/Dec 2013. The symptoms went away for the most part. I avoided anything that caused symptoms to increase for weeks (no lifting, bending up and down, increased heart rate, etc) and then slowing was able to do more without issues.

I got glutened a few weeks ago and as I was feeling better from being glutened my Chiari symptoms started acting up and are getting worse.

Trying to figure out if gluten caused my Chiari to flare up and hope it will calm down again like it did the first time. Or if I need to start looking into treatment for Chiari.

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IrishHeart Veteran
IrishHeart
Posted

My mother has Chiari. ( a few cousins do too)

She mentions it flares when she is under stress or if she overdoes something like raking or vacuuming (that motion bothers her but she stubbornly

keeps doing it ) :huh: ,  but has never mentioned a connection to her being glutened.

 

I can ask her and get back to you.

 

While I do not have Chiari, one of the first things that happens if I am hit by CC it is a resurgence of joint, bone and muscle pain, particularly

in my neck and head, so it's not a stretch to think your flare up is connected, IMHO.

NatureChick Rookie
NatureChick
Posted

Though I had never heard of Chiari, I have had issues with dizziness that come and go - completely unrelated to whether or not I've been exposed to gluten. I presumed it was caused by the iron deficiency I developed due to malabsorption before I went gluten free, but have also learned to keep an open mind when it comes to anything related to the damage done by gluten.

Dehydration can also cause dizziness due to low blood pressure if you're looking for the easy things to eliminate first.

Not crazy Rookie
Not crazy
Posted
  • Author

This is definitely chiari. I get dizzy, blurred vision, motion sickness, ringing in my ears, numb/t had pressure in the back of my head, numb/fingerling arms and hands, I can sometimes hear and feel my heart beat in my head, my neck popping echoes in my head. I get a sharp, stabbing, electric shock type pain starting at the base of my skull and goes up and deep into my head, this causes tunnel vision, then usually complete loss of vision. The pain is so intense I can't move, It has dropped me to the floor several times. It happens if I sneeze, cough, yawn, stretch, look up, or sometimes I don't even know what I did.

I thought dealing with doctors over celiac was bad, chiari is even worse. Neurosurgeon said he didn't think I needed surgery because the cine MRI showed good flow, didnt care what my symptoms were. Neurologist offered carpel tunnel surgery, drugs for my raynaud's , and a drug for something else (I can't remember for what). None of which I asked for (never looked for treatment because they didn't bother me enough to take drugs) or even had anything to do with the chiari I was seeing him for. As for the chiari, his advise "just don't look up".

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