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2 Years gluten-free!
#1
Posted 01 September 2012 - 04:33 PM
It has not been easy but there are more good days than bad.
No more anti depressants. No more weight loss. No more insomnia. Nerve pain is slllllowly getting better.
Never give up hope. There were many many dark days, even after diagnosis because it too me SO long to feel human again.
When the GI said yup, it's celiac, stop eating gluten and you should feel better in a few days and I didn't, I thought he made a terrible mistake. It was the from the wonderful people here that I learned it can take a LONG time. I learned to be kind to myself and celebrate the good days and push through the not-so-good ones.
xo
ada
IgA gliadin 24 (normal <11)
IgG gliadin 38 (normal <11)
Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy
Started gluten-free diet Aug 31, 2010
Only real symptoms are huge weight loss and neuropathy
#2
Posted 01 September 2012 - 04:40 PM
2 years gluten-free and everyday I am so thankful that we figured out what was literally killing me.
It has not been easy but there are more good days than bad.
No more anti depressants. No more weight loss. No more insomnia. Nerve pain is slllllowly getting better.
Never give up hope. There were many many dark days, even after diagnosis because it too me SO long to feel human again.
When the GI said yup, it's celiac, stop eating gluten and you should feel better in a few days and I didn't, I thought he made a terrible mistake. It was the from the wonderful people here that I learned it can take a LONG time. I learned to be kind to myself and celebrate the good days and push through the not-so-good ones.
xo
ada
Congratulations!!! So glad to hear you feel so much better. I am 29 months and I understand! I too am off of two of my three antidepressants (still workings on the last one, slowly cutting back), more good than bad days, no more mouth sores, rapid heart beats...... Life is good!!
#3
Posted 01 September 2012 - 04:44 PM
IgA gliadin 24 (normal <11)
IgG gliadin 38 (normal <11)
Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy
Started gluten-free diet Aug 31, 2010
Only real symptoms are huge weight loss and neuropathy
#4
Posted 01 September 2012 - 08:30 PM
Always great to hear stories of improvement - thank you for sharing
-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
10/27/09 diagnosed fibromyalgia - supplemented with amino acids - improvement followed by substantial deterioration
maybe one good hour per day for ~17 months
8/10/11 - Elimination Diet for Autoimmune Disease - incredible improvement along with clear reactions to most high lectin foods
only remaining symptom - severe heat intolerance / reaction to heat, humidity and exercise
Tomato, Pepper, Potato, Peanut, Soy, Bean, Pea, Citrus, Pineapple, Avocado, Shellfish, Dairy, Grain, Nut and Seed FREE
3/1/12 - Horrible flare -- same ol' symptoms but worse ~ 7/1/12 - Endo: Active Celiac 3+ years - as gluten-free as humanly possible.
11/15/12 - Improving once again - Almonds back - Eggs gone
12/1/12 - Histamine containing and inducing foods FREE - finally the last piece of the puzzle (I hope) -- the cause of my heat/exercise "allergy"...
...this was one of my earliest symptoms as a child -- the enzyme (DAO) needed to regulate histamine is created in the small intestine.
If you have read this far - hang in there - obtaining health with any AI is a marathon, not a sprint!
This stubbornly tenacious feisty optimist is vertical once again.
Celiac.com - Celiac Disease Board Moderator
#5
Posted 02 September 2012 - 05:02 AM
I love Celiac.com. I don't think I could do this without you all!
#6
Posted 02 September 2012 - 05:55 AM
So happy to "see you"!
I remember us both commiserating about the horrible burning nerve pain we had and how we were up all night walking 'round and 'round our houses so we did not wake our husbands (again). We were in dire straights back then, weren't we girl? ugh.
We were not "fast healers" like some and it was very discouraging and required more patience than seems possible.
That all seems like a bad dream now, doesn't it?
I am so very happy for you!!!! and like you, I still have remnants of the nerve pain, plenty of bone/joint pain and muscle weakness yet to resolve, but I never, ever lose hope!
Each month that passes, we get better.
I am a few months behind you in recovery and hearing how much you have progressed always gives me encouragement, so thanks a bunch for letting us know.
Happy "re-birth" day.
As always, I wish you all the best!!
xxooIH
"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
"It isn't for the moment you are struck that you need courage, but for the long uphill climb back to sanity, faith and security." Anne Morrow Lindbergh
"Kindness in words creates confidence. Kindness in thinking creates profoundness. Kindness in giving creates love."
Lao Tzu
"The strongest of all warriors are these two - time and patience." Leo Tolstoy
Misdiagnosed for 25+ years; finally DXed on 11/01/10. I figured it out myself. 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. ![]()
Celiac.com - Celiac Disease Board Moderator
#7
Posted 02 September 2012 - 06:07 AM
Thank you so much for sharing! I'm 3 months and struggling. I am having days here and there where I feel better but more days that I don't. I am not one to cry but yesterday I sobbed in discouragement - questioning if this is the right thing. I read your success stories and how long it took and I cried again this morning. This time in hope.
I love Celiac.com. I don't think I could do this without you all!
Ranne (hug)
The hardest part is being patient as the body heals.
Try to look at it this way--you are healing--- and each month that passes, is progress. The people who are 5, 6, 7 years or more past DX tells us we will feel better and better as time passes. My doc tells me "look at each year as a healing year". I was dying 20 months ago. I could not stand, walk, sit or lie down without horrid burning pain. I could not lift my arms or walk the length of my driveway. I had dozens of horrid symptoms and was weak, having lost 90 lbs. and major muscle mass. I thought death would be easier, but I refused to give up.
This summer, for the first summer since 2007, I could swim again. (not the distance swimming I used to do, just yet, but I'll take it!) and I can drive again (I had lost that ability, too) and I can sleep through the night. I had raging insomnia for 3 years.
And last month, I went kayaking.
I am not totally "there yet" ----but I am not at all the sick woman I was either.
whoohoo!!!
Healing happens.
Hang in there, hon!
"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
"It isn't for the moment you are struck that you need courage, but for the long uphill climb back to sanity, faith and security." Anne Morrow Lindbergh
"Kindness in words creates confidence. Kindness in thinking creates profoundness. Kindness in giving creates love."
Lao Tzu
"The strongest of all warriors are these two - time and patience." Leo Tolstoy
Misdiagnosed for 25+ years; finally DXed on 11/01/10. I figured it out myself. 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. ![]()
Celiac.com - Celiac Disease Board Moderator
#8
Posted 05 September 2012 - 05:11 PM
Ranne10...hang in there. You are only 3 months in...that's still really new. Healing the gut in an adult can take years. At 3 months post-diagnosis my husband still had to do all the grocery shopping in our house...I had lost 22 lbs, lots of muscle mass & was too weak to do almost anything. I remember spending MANY nights up wandering the house in pain...or curled up in a ball on the floor. I still have issues, but I CAN function! I still wear out, but I can take care of the daily things...at 3 months post-diagnosis I was discouraged this day would not come.
Anyways...one day at a time for all of us!
#9
Posted 07 September 2012 - 08:01 AM
Congratulations on your anniversary and on getting better!
Diagnosed with wheat hates me 4/13
#10
Posted 07 September 2012 - 03:02 PM
#11
Posted 07 September 2012 - 04:02 PM
xoxoxo back girl!!!
Yeah, it has been a crappy long journey, eh? (I can say that, I'm canadian).
I expect we will be feeling the effects for a LONG time, but it just reminds me how far I have come.
Every day that I am not in screaming pain, I celebrate. Every day that I don't have suicidal depression, I celebrate.
That's all I can do. I find myself singing in the car (at the top of my lungs and I am BAD) and remember a time when I thought I would never sing in the car again. Stupid little things like that that make we weep with gratefulness, I will literally CRY when I can do something that two years ago I thought was gone forever. Very few people understand this. You start feeling poorly, you start fading away and pulling back. Your friends and family watch helplessly, fearing you are going to die...You start to get better, they are SO happy but don't even realize the magnitude of how you feel and the hell you have gone through.
I would never wish this in anyone but I am not angry anymore that it happened to me. I have learned SO much about who has my back and what I am capable of. What doesn't kill us makes us stronger
IgA gliadin 24 (normal <11)
IgG gliadin 38 (normal <11)
Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy
Started gluten-free diet Aug 31, 2010
Only real symptoms are huge weight loss and neuropathy
#12
Posted 07 September 2012 - 05:28 PM
I have learned SO much about who has my back and what I am capable of. What doesn't kill us makes us stronger
Amen to all that, girl! Absolutely true, true, true.
They do not call us warrior princesses for nothing.
I do know what you mean about doing those things again that I had lost. Driving, comprehending, dancing, cooking, gardening, traveling.... all coming back to me now. Singing at the top of my lungs too! My hubs has his wife back. whoohoo!
I am so delighted for you Ada, and in a few months, I'll compose a 2 year anniversary post myself.
Many blessings on you, hon!!---stay the course-- and continued healing to you! Enjoy yourself; you earned it! xxoo
"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
"It isn't for the moment you are struck that you need courage, but for the long uphill climb back to sanity, faith and security." Anne Morrow Lindbergh
"Kindness in words creates confidence. Kindness in thinking creates profoundness. Kindness in giving creates love."
Lao Tzu
"The strongest of all warriors are these two - time and patience." Leo Tolstoy
Misdiagnosed for 25+ years; finally DXed on 11/01/10. I figured it out myself. 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. ![]()
Celiac.com - Celiac Disease Board Moderator
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