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Hey I Had A Headache

notme

By notme
in Coping with Celiac Disease

Recommended Posts

notme Experienced
notme
Posted

and it is gone. for 3 days running! this is, like, the eight thousanth painful/uncomfortable/annoying/freaky thing that has gone away. i didn't even know i had it! and neck pain has been soooo much better. it's amazing what you can learn to live with as 'normal' :( also, 'baby hair' growing back on my head (you know, that little layer of new hair...! ) also, got a cold and my BODY fought it OFF instead of having it turn into pneumonia. i am so scared to be hopeful if anybody can relate to that. could this be my new deal??????? feeling awesome??????? not freezing to death in 60 degree weather? what??

i feel like i am shedding layers of sludge. i am afraid this is too good to be real?

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Britgirl Rookie
Britgirl
Posted

It is truly incredible what we think of as normal lol I am just starting down this road and can't wait to find a new normal ;)

notme Experienced
notme
Posted
  • Author

almost forgot - and this is huge for me - went 4-wheeling (you know, 'quad') in the mountains saturday and sunday i woke up just fine. first time that i wasn't absolutely wiped out (i have been limiting my activities because i was over-doing it) and yesterday i washed windows. big windows. alot of them. is this for real???

Roda Rising Star
Roda
Posted

I'm happy for you that you are feeling well. It truely is wonderful to wake up one morning and say "wow I feel good."

ravenwoodglass Mentor
ravenwoodglass
Posted

Yea it's for real. Amazing how many things improve that we would never think of as connected. Glad to hear you are healing well.

dilettantesteph Collaborator
dilettantesteph
Posted

I didn't know how sick I was until I got better. It is amazing what we can think of as normal.

lizard00 Enthusiast
lizard00
Posted

Those are my sentiments exactly. And the perma-headache... I had that, too. It was the first thing that went away and I thought, WOW! There's hope that I might actually feel better one day.

:) Love your post.

I didn't know how sick I was until I got better. It is amazing what we can think of as normal.

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    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
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      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
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      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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