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I Can Not Believe I Felt Like This And Functioned For Years!


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16 replies to this topic

#1 a1956chill

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Posted 25 April 2012 - 07:24 AM

Many of you know my story. I was misdiagnosed /undiagnosed for 40+ years. After finding these forums and learning the tests to ask for and the correct questions to ask I was diagnosed .

I have been gluten/soy free for a long time.

I have not had anything new or different for at least 7 weeks. ( I keep a food diary even now)
Monday night I added a new/different food to my meal. IT GOT ME!!!!
BIG TIME!!!!
The brain fog was first then everything else followed. Now 38 hours later I am dealing with the explosive end ( pun intended :lol: )
I have been down in bed since Monday night.
The emotional roller coaster STILL amazes me. It will take a bit longer for my body and emotions to recover.

The point to my post is;

I can not believe I felt like this for YEARS AND YEARS and still functioned .


How did we do this ???

Many of us for years.


ALL of us are AMAZING , STRONG people .

Even at our weakest moment we are stronger then most people WILL ever be in their entire life time.
  • 0

Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


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#2 love2travel

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Posted 25 April 2012 - 07:39 AM

The point to my post is;

I can not believe I felt like this for YEARS AND YEARS and still functioned .


How did we do this ???

Many of us for years.


ALL of us are AMAZING , STRONG people .

Even at our weakest moment we are stronger then most people WILL ever be in their entire life time.



That is SO true. It usually takes a very difficult situation in our lives to build our perseverance and subsequently character and strength. We learn such valuable lessons! In fact, it may sound odd to some, but though I LOVE food as much as I do and though I did not feel sick at all eating gluten, it is a good thing I was diagnosed because it has taught me lessons. So has my dreadful chronic pain. I have learned more about myself and others in the past four years than I have in my entire life prior to that. Pain can force you to make serious changes and do serious reflecting. It can create greater awareness of others' feelings, health and so on. I have always been very empathetic but now I see things completely differently. For example, if a person is crossing a street very slowly in front of me I do not roll my eyes but feel compassion - what if that person is in pain?

Learning life lessons can make you stronger BUT it is up to you how you CHOOSE to view these life lessons and what you do about them. You can choose to have a good attitude or you can choose to become bitter. Sure, some days are more painful and difficult than others (we all have those) but to a certain extent we can control how we react.

I find it amazing how in the midst of severe pain one can experience joy and happiness in spite of it. :)
  • 2
<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#3 mamaw

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Posted 25 April 2012 - 10:39 AM

Hi Chill



sorry for yet another bad reaction... I hope you feel better soon.....I have still some issues when I can eat a food by itself add iit another food & get ill.. Its like Russian Roulette at times...



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#4 Bubba's Mom

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Posted 25 April 2012 - 01:38 PM

I'm SO sorry something got you! :o
I hope the side effects pass quickly.
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#5 tennisman

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Posted 26 April 2012 - 03:10 AM

Hope you feel better soon :)

Thanks for posting this - ALL of us are AMAZING , STRONG people .

Even at our weakest moment we are stronger then most people WILL ever be in their entire life time.

That really inspired me I agree 100 % . I woke up feeling down but after reading this I feel inspired to carry on and do something no matter how I feel :)

Thanks for posting :)
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Diagnosed with Coeliac disease in 2003

#6 a1956chill

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Posted 26 April 2012 - 06:32 AM

Thanks everyone
I am feeling a bit better today. :)

Thank goodness for food diarys, that is one food that is now on my "not going to try EVER again " list
  • 0

Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#7 sreese68

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Posted 26 April 2012 - 06:57 AM

I can not believe I felt like this for YEARS AND YEARS and still functioned .


How did we do this ???

Many of us for years.


ALL of us are AMAZING , STRONG people .

Even at our weakest moment we are stronger then most people WILL ever be in their entire life time.


Thank you for posting this. Got some hard news last night. This journey I've been on has shown me I can handle it. Your post is very reassuring. I must say that picking up the pieces of our lives post-diagnosis isn't easy. I feel like I missed my 30's due to the effects gluten had on my brain and personality. Just gotta keep pushing on...
  • 0
Sharon
gluten-free March 2011
Failed gluten challenge May 2011
Diagnosed celiac 5/25/11

#8 sallyalewis

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Posted 28 April 2012 - 01:34 PM

Thank you for posting this. Got some hard news last night. This journey I've been on has shown me I can handle it. Your post is very reassuring. I must say that picking up the pieces of our lives post-diagnosis isn't easy. I feel like I missed my 30's due to the effects gluten had on my brain and personality. Just gotta keep pushing on...


I know what you mean. Last week I glutened myself and could hardly move my joints and muscles! How on Earth did I walk around Baltimore last Summer in the 100+ heat?
So glad to be feeling better!
Sorry you were glutened! It's hard to believe anyone could understand how awful it feels. :blink:
  • 0
Gluten Free since 2/12.
Self/Doctor diagnosed.
No testing done.
Allergic to everything else! - verified by allergist
Rosacea

#9 dws

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Posted 28 April 2012 - 07:14 PM

Many of you know my story. I was misdiagnosed /undiagnosed for 40+ years. After finding these forums and learning the tests to ask for and the correct questions to ask I was diagnosed .

I have been gluten/soy free for a long time.

I have not had anything new or different for at least 7 weeks. ( I keep a food diary even now)
Monday night I added a new/different food to my meal. IT GOT ME!!!!
BIG TIME!!!!
The brain fog was first then everything else followed. Now 38 hours later I am dealing with the explosive end ( pun intended :lol: )
I have been down in bed since Monday night.
The emotional roller coaster STILL amazes me. It will take a bit longer for my body and emotions to recover.

The point to my post is;

I can not believe I felt like this for YEARS AND YEARS and still functioned .


How did we do this ???

Many of us for years.


ALL of us are AMAZING , STRONG people .

Even at our weakest moment we are stronger then most people WILL ever be in their entire life time.

Just curious, what food did you try that got you?
  • 0

#10 Adalaide

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Posted 28 April 2012 - 07:44 PM

I got got this week too. I felt so weird and foggy I wouldn't even drive, I was like yeah, that wouldn't be safe. I was driving for several years in that fog. :blink: I wonder now how I didn't kill myself or even end up in some sort of accident.
  • 0

"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#11 AVR1962

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Posted 28 April 2012 - 09:57 PM

I hear ya'! I said something very similiar the other day. It is amazing what the body takes and tries so hard to deal with. I think when we are in the midst of it we don't realize how sick we are as the whole process is gradual. I think it is once we get well and can reflect that we realize just how sick we were. If I look back to where I was a year ago, there is no comparison to what I am today......I am actually enjoying life again......I can work in the yard without having to take breaks or having every muscle in my body sore the next day. We're still going to run into those foods that don't set well with us but at least now those are temporary setbacks. Congrats to you!
  • 1
Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#12 a1956chill

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Posted 29 April 2012 - 03:18 AM

Just curious, what food did you try that got you?

gluten free oatmeal :blink:
  • 0

Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#13 dilettantesteph

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Posted 29 April 2012 - 04:55 AM

You may be one of the 10% or so who reacts to avenin in oats just like to gluten. When I tried gluten free oatmeal I was sick for 2 months. I didn't take that little warning on the package seriously and had half a bowlful. In hindsight I should have tried a very small amount the first time.

I was misdiagnosed until I was 48. I was sick as long as I can remember. I still went to school and work, and did what I had to do. That was until I have the explosive end issue and couldn't get very far from a toilet.

My kids got diagnosed earlier and want to stay home when they are glutened. They can't handle homework with brain fog etc.

I think that you get way tougher having to function when you are constantly suffering from symptoms. I like not having to be so tough now.

I hope you are feeling better soon.
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#14 MitziG

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Posted 29 April 2012 - 05:45 AM

I think the same thing every time I get glutened- wondering how I will survive the next 10 days! And then I remember I survived 30 years that way..... once you start feeling GOOD, it is a difficult thing to go back to! I guess for a lot of us, feeling bad was just "normal"!
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#15 rustycat

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Posted 29 April 2012 - 07:45 AM

I think that you get way tougher having to function when you are constantly suffering from symptoms.


The hardest thing for me was being told I was a hypochodriac by many people, including doctors, over the years. Apparently, my biggest problem was always stress. Gee, all I needed to do was relax and all the pain should go away. LOL.
  • 0

Rickets (severe Vitamin D deficiency) shortly after birth
First trip to Dr with severe C, age 7
Infertility, multiple miscarriages, eventually adopted 2 boys (not related)
2010: Negative celiac blood test, but staying on gluten free diet due to vast improvement in all symptoms
2011: June - started low salicylate diet to improve rosacea - it worked really well!
2012: May - started Paleo way of eating. Emotions and blood sugar seem to have evened out. Brain fog vanished.

2013: May - after 4 month elimination diet, was able to add back dairy, but nightshades are gone for good (my arthritis is gone, too!!!)



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