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cstark

Keep going or stop all together?

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Update from another post made:

I had my neurologist appt. just last week due to the symptoms I had been experiencing.  He wants me to go for an EMG, and we had gotten it scheduled for mid-August.  My question is should I keep searching for what's going on?  I am in the "in between" stage when I feel the best of the best.  It's like there is nothing actually wrong with me, and that it's all my head.  I know that gluten is VERY strong trigger, but not the main cause of the problem.

Another thing is the cost involved.  Do I really want to spend dollars just find out that "everything looks normal.  Don't know what's wrong with you." idea from the doctor?

Thoughts/advice is welcomed.

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I think the decision is totally up to you.  If you have severe neuro symptoms that you absolutely have connected to eating gluten, then just stay off gluten and see what happens long term.  It will take awhile for changes to be noticed, most of the time, so be patient. But if you really feel like there is something else going on, then you will have to have more testing done, to help rule out other possibilities.  I know it is a hard choice, especially when you have to pay for some of it out of pocket.

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7 minutes ago, cstark said:

I really dispise sometimes the idea of needing to be an adult.  YUCK!

 

Ohhhhhhhh.....I know that feeling well and I am 57 years old!  Sometimes it would be great to just be a kid again with little to no responsibility.  ;)

If you are feeling a lot better and your symptoms have improved, even a little, then I would personally forgo any other testing for now. That is just my opinion and you do not have to follow my lead. You can always go back and have them done if things go backwards and get worse on the gluten free diet.  Seeing as neuro symptoms are HUGE with celiac, I would give the diet some time to do its thing. My neuro symptoms went away completely. It took awhile but they are gone, never to return.

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3 minutes ago, Gemini said:

Ohhhhhhhh.....I know that feeling well and I am 57 years old!  Sometimes it would be great to just be a kid again with little to no responsibility.  ;)

If you are feeling a lot better and your symptoms have improved, even a little, then I would personally forgo any other testing for now. That is just my opinion and you do not have to follow my lead. You can always go back and have them done if things go backwards and get worse on the gluten free diet.  Seeing as neuro symptoms are HUGE with celiac, I would give the diet some time to do its thing. My neuro symptoms went away completely. It took awhile but they are gone, never to return.

I have been off gluten for almost 10 months now.  How long does it have to take?  I had a healing touch treatment yesterday, and my body just went crazy on the therapist.  Is this STILL a part of the gluten?

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10 minutes ago, cstark said:

I have been off gluten for almost 10 months now.  How long does it have to take?  I had a healing touch treatment yesterday, and my body just went crazy on the therapist.  Is this STILL a part of the gluten?

It took me 3 years to rid myself of all symptoms but I am a lot older than you.  As for the treatment you had, I am not sure I would be doing that right now.  Let me explain. I am a believer in some things alternative. I do believe in energy work because I am an electronics tech by trade and understand the whole concept of how it works. After all, your neuro system works on energy.  It is the body's electrical system.

Not all practitioner's are useful. I really think, from my own personal experience, people are born with this talent and it is not something that can be acquired. I have personal experience with a renowned healer in my area, who has since passed away from old age.  She was phenomenal and I was a total non-believer when I met her. A friend of mine introduced me to her when I was having horrific TMJ pain, years ago. No one was helping me but I was an undiagnosed celiac at the time, with a lot of inflammation.  This woman laid her hands on me and meditated. Not long but I was mystified at what she was doing.  I had little to lose so what the heck!

Well.....the next day I noticed no pain...it was gone. I could not chew gum or eat hard to chew food because my jaw would scream in pain. Yet...the pain was gone.  It never returned. I was gobsmacked, as the British say. Could not believe it. This woman had documented cases of complete healing of people who were written off by the medical field...including a local baby who was born profoundly deaf. They told the mother to enroll the child in a school for the deaf because there was nothing they could do. Well.....they visited Charlotte the Healer and after a couple of sessions, that baby could hear and respond to sound like any other. That is documented with the medical people in the town in which it happened. They were dumbfounded.

I know what you had done is slightly different than what Charlotte did to me but you get the picture.  When you have a negative experience with any alternative medicine, I would not repeat it. If your body went crazy, as you stated, let that go for awhile. You can always resume it when that isn't happening. You pay a lot of money for these things out of pocket so you want to make sure it is actually helping you.

I guess what you have to ask yourself is what testing is the doctor wanting to do and what exactly are they trying to rule out?  Some of it might provide useful information. But 10 months gluten free might not be long enough if the problem is actually gluten and nothing else. Have you  noticed any positive changes since going gluten free?

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I guess the positive change is that I am not having siezures as much anymore.  Oh, I still get the brain fog every now and then, but it does not last as long.  When I get the brain fog, it's usually a precursor to the twitching and spasming.  Because of this, I apply Frankicense Essential Oil to the base of thes kull where it meets the spinal cord.  This seems to keep me from twitching.

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