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marciab

The Plot Thickens In

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Well. A brick hit me this week. :blink: After 16 and 1/2 years of being completely disabled -

As of September 4th, I apparently don't need a motorized cart to go grocery shopping anymore. My legs are fine and I don't even get winded anymore.

And as of September 6th, I can sleep about 9 hours a nite all on my own without any meds. :D

What do you think ? Can I consider myself a celiac ? Am I part of the "cool" crowd now ? :lol:

I know the NIH said that nuerological problems could be from celiac, but how can this be ????

My nocturnal myoclonus and my myoclonus in my hands went away back in August.

I am still getting a little tired, but if I rest for a few minutes or eat something, I snap right back out of it.

Please do not tell me this is temporary ....

Marcia


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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This is great!! If all this progress came after you went gluten-free, I'd stay gluten-free!! Who cares if there's an official diagnosis? After all these years, none of your "official diagnoses" cured you like this has!


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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YAY!!!!! I'm so happy for you. I had a lot of mobility issues for the last few years before figuring all of this out. I was eyeing the motorized cart at the grocery store, but I didn't have anyone to help me, so I used the regular grocery cart as a walker, because while standing I could reach more stuff that I normally bought.

I'm undiagnosed, so are a lot of people here. Welcome to the club! :D From what I've experienced, nobody here cares one bit about whether you have a diagnosis in order to call yourself celiac when you might "JUST" be gluten-intolerant. I say I have celiac because it takes less time to type. :lol:

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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Isn't this cool ?? :D I'm so afraid it is not going to last though.

Thanks Carla, I went "everything" free all at once because my digestion was so bad. But, I am still thinking this is all celiac.

Nancy, I am so glad you got over your mobility issues too. :)

Can you beleive this ?

Marcia


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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Marcia--I actually got tingly reading your post!! This is the greatest news--I have a feeling that it will not be temporary, and that this is just the beginning for you :D


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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Isn't that a wonderful brick. For me it was realizing I had just run up the stairs about 6 months after diagnosis, I sat at the top and cried. For me this has not only lasted but continued to slowly keep improving. I also was amazed when my neuro problems went away I wasn't expecting it. I am so glad you are doing so well and I hope you continue to improve.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Thanks Patti,

I sure hope this lasts. :D I've had remissions over the years, but I have never been off all meds and felt this strong.

I wonder how many others here have had similar experiences. Marcia

Thanks Raven - The more success stories I hear the better I feel about all of this. :)

Thanks nooner - pretty cool, huh !

I would have never believed that this could be resolved with diet :o


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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It still blows me away. The other day I went to the mall with a friend of mine, and I realized after walking back and forth all over the mall that nothing hurt. Not even my feet.

Just something simple like that, which I had taken for granted at one point, and other people couldn't understand about when I couldn't do it, was WONDERFUL!

Now, when I hear someone talking about chronic pain or fibromyalgia, my celiac radar goes up.

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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Guest nini

that's so great... mine was this time last year when I marched in a parade with our local Celiac support groups and actually survived it without having to find a bathroom or collapse on the ground because my legs were going numb or something weird like that. Today my daughter and my mom and I walked in the same parade with the support groups again and I actually RAN to catch up with someone and didn't get winded! It just keeps getting better. (now if I'd only remembered to wear sunblock I wouldn't have this sunburn on my face!)

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That's so cool Nini! People who don't have a gluten problem sometimes don't realize what those parades, run/walks and 5k's really represent. It's either freedom from pain and mobility issues or freedom from being tied to the bathroom, or freedom from a dozen other things that limited your life.

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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Guest nini
That's so cool Nini! People who don't have a gluten problem sometimes don't realize what those parades, run/walks and 5k's really represent. It's either freedom from pain and mobility issues or freedom from being tied to the bathroom, or freedom from a dozen other things that limited your life.

Nancy

that is so true... just 3 years ago I wouldn't have considered doing something like that, but two years in a row now I have successfully walked in this parade! It was so nice having my mom with me today, I can tell she's really proud of how far I've come. She even commented that just a few short years ago I was so ill I wouldn't have been able to do something like that. It was also neat seeing group members that I haven't seen in a while!

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AW !! You guys are making me cry !! I can walk through the mall now too. I can only dream about running again. :)

I had no idea you had been through this too.


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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{{{HUGS}}} Me too. It's nice to know there are other people with the same experience. The symptoms really end up isolating you, and you end up feeling alone in a dozen different ways.

I will never stop being grateful that I found this board and all the wonderful people here.

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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Guest nini
AW !! You guys are making me cry !! I can walk through the mall now too. I can only dream about running again. :)

I had no idea you had been through this too.

it was interesting hearing my mom talk to the other members of the local support group yesterday at the parade, talking about not knowing why I was so sick as a child and watching me deteriorate over time and her telling me all the time she thought it was something in my diet and I didn't want to listen... anyway, I'm rambling... I wasn't completely disabled but was quickly on my way there 3 1/2 years ago and now I feel like a completely different person. I've lost almost a whole person in weight (110 pounds) and have gained a whole new perspective on life.

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Thanks folks,

Ya'll have given me reason to believe that my mobility issues are behind me.

I guess, this is just going to take time before I adjust to the new me.


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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Marcia, I am so happy for you! It is a breath of fresh air to read your great, encouraging words of improvement.

Before my diagnosis, I was in bed nearly every day for the last two months pre-dx. Couldn't do anything because of the joint pain and even if I could, the fatigue and bathroom issues kept me at home. Had to drop out of the PhD program I was in, with the hope that I could at least finish my master's (I would've started the PhD classes that fall). I was finally diagnosed and was given my life back. Recently, I began having numerous, similar issues....finally realized it was all food related. It is hard to believe! But, like you, I am just GRATEFUL. So you can join the list of others here who are standing (or for some, sitting!) tall and feeling great. We are happy to have you in the "feeling better" group.

I'm sure your family and friends are happy, as well!

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Laura,

Thanks and congratulations to you to. I am happy to be a member of the "feeling better" crowd. :D


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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Loraleena,

Thanks, but sorry to hear that your fibro is back. That is the kind of thing I am worried about. My fibro only comes back now if I am not sleeping good. How long were you pain free ? Marcia


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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Congrats marcia.. glad to hear that you are feeling better. it only gets better!! welcome to the club. and no one needs an "official" diagnosis to be here. you are welcome either way!


Stephanie

Gluten free since October 05

son born severly premature due to

celiac

"True love stories never end" Richard Bach

"Did you ever stop thinking and forget to start again?" AA Milne

If you live to be a hundred, I want to live to be a hundred minus one day so I never have to live without you" AA Milne

Swimming Instructor #2 and Town Crier of Rachelville

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thanks folks,

I really enjoy being a member of this board, but one of the reasons I started this thread was because I am soooo confused .... :blink:

I am still hung up on that Chronic Fatigue syndrome diagnosis from 1992. I am on disability for CFS/FM. My diagnosis is (was ??) air tight. :unsure:

I honestly just can't believe celiac is the answer even though I have made so many improvements. And it certainly explains so many other problems I have had in my lifetime. ADHD, brain fog and IBS ... duh !!!! I feel like a whole new person. :)

Anyone else go through this doubting period ?? :blink:


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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Yea. I think it's natural since it was going on for so long. In one way or another the vast majority of us suffered for years with no explanation. When it goes away, almost as if by magic, it's hard to trust it or accept it.

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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Thanks Nancy,

You are right. It does seem magical. :) And so "unbelievable" that a simple diet change could enable me to walk normally again. Geesh !!

I can hardly wait to go to the local art festival this year. :D


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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YES! The luxury of strolling and wandering, and then going AAALLLL the way back to that one artist on the far side of the fair just to ponder something...

The fact that you have to bring a gluten-free bar to eat, or that you have to go back to the cooler of food in the back of your car to eat lunch, is meaningless compared to the freedom of the rest of the day.

:D

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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