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How Does It Feel To Be Cured Of Celiacs, When You Finally Get Your Life Back?

cured celiac cure life back saved symptoms disappeared healed

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#1 rcheltrvel

 
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Posted 08 March 2014 - 09:46 PM

Just curious of how it feels to get your life back after being sick and undiagonosed with Celiacs, long term? How does it feel to get healthy again?
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#2 kareng

 
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Posted 09 March 2014 - 06:07 AM

It feels great to feel "normal", of course.

 

I just want to address the title  as I don't want you to have any misconceptions.  Celiac is not "cured".  You have it for the rest of your life. You must eat gluten-free for the rest of your life.  You may feel "cured" but you can never stop treating your "illness". Unlike other chronic illnesses,  the treatment isn't dangerous.  The illness doesn't progress on the gluten-free diet.   :D


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#3 IrishHeart

 
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Posted 09 March 2014 - 06:44 AM

I have to echo Karen's thoughts about the word "cure".

There are really no "complete cures" for autoimmune diseases, but there are treatments that put symptoms into

remission. We're lucky that it's the gluten free diet and not a medication or treatment that has horrible side effects

and we have an excellent chance of recovery provided we remain G F and address any deficiences, etc.

 

For me, it took a long time to feel good. But honestly, I was very ill at diagnosis,

so even though I have joint and connective tissue issues

as a result of going undiagnosed for so long, I am so much better

than I was,my brain works again,  I can do more (physically) than I could for a long time 

and I sleep through the night for the first time in my life. And I do not live in the bathroom anymore. (yaay!)

 

So, in a way, it feels like a whole new life. :)  whoohoo!


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#4 a1956chill

 
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Posted 09 March 2014 - 07:44 AM

as kareng and irishheart have already said no cure but  a forever treatment. I am good with that :)

I dont know if any one that knows me would call me normal in any way :P :lol: :lol:  but knowing that my hard work in adhering to a gluten free diet has  returned my gut to  "normal" ( well as normal as I will ever get :lol: :lol: ) is priceless :D

 

I ( as Irish) was undiagnosed for a very very long time, the damage from untreated long term celiacs can be tremendous ,, even life threatening ,,

The complications  of being undiagnosed,, there for untreated  ( additional intolerances ,gluten ataxia ,  additional autoimmune diseases ect ) is what I am  dealing with  long after my celiacs is under control.


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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


#5 nvsmom

 
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Posted 09 March 2014 - 07:47 AM

I don't feel cured either. I am not back to great health yet, and I honestly doubt I ever will be - too many permanent health problems were created by decades of a missed diagnosis. I may no longer have to carry an extra sweater to hide my bloat after I eat, but my thyroid still doesn't work, I still have an autoimmune blood disease, arthritis is still there (although much less), and a few other areas are still out of whack.

I feel better than I did, but far from cured.
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#6 1desperateladysaved

 
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Posted 09 March 2014 - 09:57 AM

I feel so much better it is ridiculous.  I am carrying some damages though and still gathering inventory about it.  There wasn't a day that I said, "Oh, now I am better!"  There were many days I did feel that way.  It feels good to have a clear mind and energy.

 

D


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#7 a1956chill

 
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Posted 09 March 2014 - 10:39 AM

  There wasn't a day that I said, "Oh, now I am better!"  There were many days I did feel that way. .

 

D

yeap :)

 

it is not 'one day you feel like crap and the next day you are normal again never to be ill again'

 

it is  slow process ,after awhile you realize you are having more good days then bad, ,,,that you feel so good that a bad day can blind side you but good days come again , & again & again :wub:


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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


#8 rcheltrvel

 
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Posted 09 March 2014 - 02:29 PM

Thanks. Sorry, I should have worded it better. I know there is no cure but unlike many other autoimmune, there is at least a way to repair to some degree and feel better. You can't do that with let’s say Rheumatoid Arthritis or Fibromyalgia. With those there is no real end, no relief that actually fixes something, only band-aids. As I understand it, removing gluten from your diet actually repairs you somewhat and that has to feel better at least!


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#9 GottaSki

 
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Posted 09 March 2014 - 03:29 PM

Thanks. Sorry, I should have worded it better. I know there is no cure but unlike many other autoimmune, there is at least a way to repair to some degree and feel better. You can't do that with let’s say Rheumatoid Arthritis or Fibromyalgia. With those there is no real end, no relief that actually fixes something, only band-aids. As I understand it, removing gluten from your diet actually repairs you somewhat and that has to feel better at least!

 

Yes, removing gluten allows your small intestine to heal which allows your body to absorb all the nutrients needed to improve symptoms present throughout the body...not just the digestive system :)

 

Added bonus....many that remove gluten have marked improvement in symptoms of ALL autoimmune disorders - RA and Fibro included.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#10 IrishHeart

 
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Posted 09 March 2014 - 03:40 PM

....and some discover they never even had "fibro" or thyroid disease or clinical depression or

incurable insomnia, or ..., or...(fill in the blank)  .....at all....celiac is the great mimic.

 

See how your body heals and be patient. My motto:  "every day is a healing day".


Edited by IrishHeart, 09 March 2014 - 03:44 PM.

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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#11 GottaSki

 
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Posted 09 March 2014 - 03:42 PM

yep, what she said :D


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#12 ravenwoodglass

 
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Posted 10 March 2014 - 01:56 AM

It feels wonderful to not be in pain every day. I do still have a lot of damage that came about because of the long time it took for me to be diagnosed and it did take years to get to the point where I could live a semi-normal life. However it also makes me a bit sad when I think of all I missed out on with raising my children. My poor kids grew up with a mother who was slowly dieing in front of them. One of them as a teen even told me the family would understand if I committed suicide. No child should have to go through that. It also makes me sad that they never got to know the 'real' me as I wasn't diagnosed until they were almost fully grown.

Thankfully doctors are getting a bit more savvy about diagnosing us so hopefully there are fewer and fewer people living with having to watch a loved one suffer so greatly.


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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#13 KCG91

 
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Posted 17 March 2014 - 03:21 PM

I'm lucky in that I think I was diagnosed only a few years after problems began, that although looking back I can see I was ill, I didn't really have anything dramatic going on at the time of diagnosis (again, lucky to see an attentive GP!) and that other than the usual anaemia I didn't have any other AI illnesses. 

However, six months in and the difference certainly feels massive. Souped up version of the old me about covers it! As well as having more energy and a better mood generally I notice it in the sports training I do - I'm finally getting back what I put in, rather than just exhausting myself. Watch out world ;) 


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Katie

 

Diagnosed with Coeliac and severe anaemia in September 2013

Gluten free 11/10/13

 

 

 


#14 NoGlutenCooties

 
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Posted 18 March 2014 - 05:17 AM

I'm lucky in that I think I was diagnosed only a few years after problems began, that although looking back I can see I was ill, I didn't really have anything dramatic going on at the time of diagnosis (again, lucky to see an attentive GP!) and that other than the usual anaemia I didn't have any other AI illnesses. 

However, six months in and the difference certainly feels massive. Souped up version of the old me about covers it! As well as having more energy and a better mood generally I notice it in the sports training I do - I'm finally getting back what I put in, rather than just exhausting myself. Watch out world ;)

 

That's exactly how I feel.  I was asymptomatic when I was diagnosed but since being gluten free my mood is better, I sleep better, and I can get in a really really good work out and come out feeling strong instead of beat-up.  For not knowing anything was wrong with me before the difference is pretty amazing.


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Age: 42

Positive Bloodtest: Oct 1, 2013

Gluten-free since: Oct 2, 2013

Celiac confirmed by Biopsy: Oct 29, 2013






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