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Kiwiwio

Member Since 29 Aug 2012
Offline Last Active Sep 13 2012 12:03 AM
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Posts I've Made

In Topic: Steroid Shots

29 August 2012 - 06:43 AM

I used to be a professional athlete and had a ruptured disc in my cervical spine. After one round of cortisone, feeling returned to my hand and the pain subsided but never stopped completely. I recommend nightly (light) muscle relaxers and IBuprofein several times in the day (unless you start to vomit blood). You can look into surgical options but I have had the fortune to speak to some of the best surgeons and sports doctors in the world from France, USA, Germany and New Zealand and the information I received from them and my fellow athletes with the same injury was AVOID surgery, if you can. Also, you can try stretches and rehab. Once you become gluten free, you may find the swelling goes down and life is more tolerable- I did.

I was diagnosed celiac as an infant. I had seemingly built up a tolerance but in my 20ís things started to get bad. I have dermatitis on my face and terrible inflammation in my joints and in my bowels (all on the right side).
I had unrelated back /neck problems for years and finally went to see if I could get some relief. After 2 MRI scans the doc said the biggest culprit is a herniated disc in my neck. She said she needed to do an outpatient procedure but in the meantime she could do trigger point injections with cortisone.
The injections into my back had a fantastic side effect on my inflammation. It is the ONLY relief I have had in 15 plus years including going gluten free.
Unfortunately it wears off in a few weeks.
Has anyone else had this experience?


In Topic: Gluten Neuropathy

29 August 2012 - 06:21 AM

I do not have your same symptoms but i am familiar with people thinking you are making it up, a hypochondriac, lazy, crazy, etc.. Forme, I think this was one of the harder sides of my celiac. When I became soooo ill and they kept misdiagnosing me, my family, doctors and many of my friends thought i was making it up, bulimic (from the constant vomiting), lazy, hypochondriac, etc.. The incredible thing is, one cannot 'make-up' our symptoms. It certainly does shake your trust in people and doctors. Hope things get better!


I've been really struggling since mid June with sudden onset gluten neuropathy. It's getting worse. I think I've had symptoms of gluten intolerance for at least ten years, but it was all gastrointestinal before and misdiagnosed until August of this year.

One afternoon, I fell asleep exhausted on the couch. When I woke up, I was drooling prolifically and could barely get my body to respond to walking or anything... I felt like I'd been drugged. My vision was blurred (ocular ataxia). I soon began vomiting, then my feet turned in and locked (dystonia), then my hands. This came and went. Within a few hours, my torso was jerking (myoclonus), head turning, muscles convulsing, and hands (especially right) tremoring. Slurred speech, stuttering. Unable to walk (ataxia). Needless to say, we went to the ER (of a world renowned hospital). They sent me home, confused with my condition. The next morning, I woke up with an insane migraine and was rushed via ambulance back to the same ER- I don't remember that ride at all. Long story short, MRI revealed very little, other than a couple of white lesions on cerebellum (which they weren't concerned about). The rest of the tests came out negative. No seizures apparent on EKG. They sent me home, again. Neurologists had a no clue- not any of the 15 OR SO that came by to examine me.

The neurologists at Harvard told me, after a five minute cursory exam, that it was "psychological" and that I should see a psychiatrist.

Over the next two weeks, I did my research, went on a trial diet (where I discovered the neuro symptoms returned within 30 minutes of accidentally ingesting gluten), returned to the same doctors, and asked for a blood test for gluten intolerance. They didn't believe me, but ordered the test anyway.

It came back POSITIVE. It's been two months since my diagnosis and I try everything I can to stay gluten free.

So long as I avoid gluten in ANY increment, I don't get the neuro symptoms. But within 30 minutes of getting "glutened", they return in full force, starting with a steady progression (first face flushes, my vision blurs, right hand starts tremoring, 10 minutes later my head starts whipping left, and five minutes after that my muscles seize and feet turn in, locking). I have Diazepam for when this happens, and it's worked so far, so long as I catch it when my hand starts tremoring...

... until last night. Last night it failed to work at all. I was left in public when it happened and fell down outside of a cafe. No one would look at me or help me (I live in a major city- nearly 150 people must have seen me). The medicine didn't work.

It's been 18 hours since and I can't stop tremoring (except when I sleep). I'm ONLY 25 YEARS OLD.


In Topic: Do Reactions To Gluten Get Worse The Longer Diagnosed?

29 August 2012 - 05:28 AM

That is so interesting! I used to get panic attacks and since I have been gluten-free, it has largely subsided. I do get anxious when I accidentally eat gluten. I thought it was from the fear of the pain I would or was feeling. Is this a physical reaction caused by celiac?

In Topic: Do Reactions To Gluten Get Worse The Longer Diagnosed?

29 August 2012 - 05:26 AM

I definitely have more severe symptoms or perhaps similar to my worst attacks prior to diagnosis. The other day, I was in so much abdominal pain, I seriously considered going to the hospital for a morphine drip. The last time i even had soy sauce, I was sick for 2 weeks, vomiting, diarrhea, joint pain, foggy head, hung over feeling. It does for sure get worse but i also wonder if it feels more severe because the constant, intense, debilitating pain that I had (particularly in the year before I was diagnosed) isn't present. I think when yu feel that bad every day and it finally stops, maybe your pain threshold decreases.