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Member Since 21 Feb 2009
Offline Last Active Oct 20 2013 09:02 PM

#692776 Is It Just Me?

Posted by on 16 April 2011 - 11:02 PM

It's not just you. It's been two years and two months for me. I've been very strict about my gluten-free, including non-food products... Also eliminated corn, soy, nearly everything artificial or overprocessed, sorghum, and experimented with eliminating quite a few other things.

That being said, I was pretty bad (hospital stay) by the time I was diagnosed. I've been to every western and eastern doc I can afford, and now I'm just trying to eat as purely as possible, and trying to balance rest with getting stronger. I'm putting my fingers in my ears and saying "LALALALALALAICAN'THEARYOU" to the word refractory.

I don't have much to offer, just know you're not alone. Keep your chin up, and keep searching for answers.
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#680099 Symptoms Related

Posted by on 03 March 2011 - 04:05 PM

I had many similar issues... tingly fingers, dizzy... the only two items I tested low for was iron and D. Doc put me on a D prescription for 6 weeks and it helped... it's very possible for your body to be low in some vit/minerals but not test low.

You'll see it's very common for us to be low in iron, b-12, d, calcium/magnesium.

If your body is malnourished, lots of things can go wrong.

My iron shot WAY up when I went gluten-free. Doc didn't believe it. It's still low, but it's low in normal range.
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#680098 What Do You Miss?

Posted by on 03 March 2011 - 03:58 PM

I miss walking out the door for the day/weekend with only my license and debit card!

I miss beer battered fish tacos and pot stickers. =)

And, I very much miss the social aspect of food, too... sharing a bunch of appetizers, passing around plates and sampling it all.

Ahhh... must learn to cook more exciting foods :P
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#679833 Small Successes

Posted by on 02 March 2011 - 04:58 PM

Well, it's been 2 years gluten-free. Still can't work, can't drive much, need caretakers.... BUT!!!!....

I'm making these really exciting baby steps and getting better. A small sampling:

-It's been over a year since I've had to go to the ER.
-I made it through a long weekend rehearsal (singing) without a giant meltdown (think reverting to 5 year old when tired and hungry + fatigue). I did have to sit out some, but never had to lie down or leave.
-I can sit up with my legs straight out in front of me. I've had this terrible neural tension preventing me from doing that. =)
-My physical therapist has said I've turned a corner and am now strong enough to do some of the exercises that will make me stronger.
-When I walked in to acupuncture yesterday, my acu said that I looked good and I definitely had better energy.

I know it's a long way to go, and I get SO frustrated sometimes, but I have to keep reminding myself where I was two years ago and couldn't walk without help.

It's kind of like watching a snail race though. B)

Here's to moving forward and finding reasons to celebrate. =)
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#679830 Bone Pain & Other Odd Things...

Posted by on 02 March 2011 - 04:45 PM

Welcome! Lot's and lots of strange ones for me, too:

Nerve pain, back pain, muscle twitches, canker sores, dizziness, fuzzy thinking. I could go on, but I won't. There's a big, bright, gluten-free light at the end of the tunnel!.

My blood test wasn't positive, BTW... "equivocal". Biopsy was positive though.

Happy eating.
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#665944 Panic?

Posted by on 06 January 2011 - 05:16 PM

Understandable... You're not alone.

For me, one of the things that helped me get diagnosed was gluten-induced anxiety. When I went gluten-free, from time to time I would get the out of nowhere just sitting there and BAM! anxiety. Remember that your body is now in big time repair mode, and it doesn't always discern real danger from fake danger. Sometimes it's right, and sometimes it's wrong. Like Marz says, learn to embrace that moment. (I know, easier said than done) I would think, "Wow. Fascinating. My adrenal system is fascinating." Then, console yourself like you would a child scared of a monster in the closet.

I'm a new BIG believer in the importance of nutrition. Take your vitamins. Eat your veggies, meditate, enjoy quality people.

That being said, keep your eyes open for possible triggers, in case it isn't a false alarm. I found that most of my anxiety happened when I needed to eat (kinda like low blood sugar, but my blood numbers were fine)... hormone shifts also trigger it. Also, when my ferritin or B-12 drops too low.

Best. =)
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#665941 Sundays At Church

Posted by on 06 January 2011 - 05:02 PM

I read an article that there was a gluten-free family in Rexburg, ID that started bringing rice bread. Same thing there, it turned out there were other gluten-free people that needed it. They ended up training the people that handled the bread that the SAME PERSON would only handle (break) that bread, then only gluten-free bread was on that tray... and everyone has gotten a Celiac education!

Bravo, and a good reminder for all of us to speak up!
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