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Finally@45

Too Old For A Diagnosis?

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I posted one message on the Super Sensitive Forum, it seemed polite to post one here too!

I am 45 years-old, female, and of mixed-race ancestry. I have been "sick" literally for as long as I can remember. By chance, I stumbled upon a website that mentioned how some people with undiagnosed Celiac Disease have trouble digesting some foods that have no gluten, making it that much harder to identify. I decided to experiment with a gluten-free diet, got tested, and here I am.

If there are stages, much like mourning, to being diagnosed with something after going a lifetime of dealing with remarks from people, fatigued, painful joints, and mysteriously having intestinal distress out-of-the-blue, I am sure I'm going through those stages.

First, there's a feeling of relief... finally there's a condition that ties all of your symptoms together.

Second, there's a spirit of "socially fitting in" as you realize there are hundreds of websites for the Celiac community.

Third, there's a social justice spark as you consider writing a blog or sending e-mail blasts to your family because you just KNOW so-and-so must have it too.

Fourth, there's a parental guilt as you realize the kids have to be tested too...and what if they've had it all along?

Fifth, for women with high risk pregnancies, there's even more parental guilt and anger that OB-GYN's don't have some sort of list for you to peruse or tests for celiac disease as potential causes of problems in pregnancy.

Sixth, you laugh as you have your first experience of someone asking, "Gluten what?" "Does that mean you have diabetes?"

Seventh, you become paranoid about eating out at a restaurant you haven't had a chance to "review" yet.

Eighth, there's frustration about all the time lost dealing with the symptoms and if you're as old as I am, you realize you may have had more years without a diagnosis than years left with a diagnosis.

Ninth, you remember those worse times you felt like crap and how it interfered with something else you needed to do. Then, you realize it must have been celiac disease. You cry. (The thought of PE in grade school is so emotional for me, and to think I could have had a better experience had the numerous doctors my mother sent me to had a clue.)

Tenth, you remember all that pizza and spaghetti you ate....aargh. More tears.

Eleventh, you want to scream. So you do.

Twelth, you resolve to pick up the pieces, thank God for leading you, and move on.

Blessings to you all.


Celiac & Mastocytosis

Follows a diet similar to the Paleo diet, minus high-histamine items such as

avocadoes, mangoes, papaya, berries, pork, farm-raised fish, spinach, and seeds.

No eggs or red meat either.

 

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Hello & Welcome

By golly I think you have got it!... It is normal to go through every emotion,, just as you would a loss of a loved one.. After all, you did lose a major part of your being, knowledge & what you were taught from your parents.. So yes, there is a loss.

The good news is that you understand you must go forward & learn how to live & be happy... For me, I would & am glad I have celiac instead of cancer or some other illness where they feed you drugs & chemo & more drugs to counteract the original drugs & so on... This is an easy fix , changing your way of eating.. Once that is learned then everything falls into place.

I will stay trying to get family tested & on board can be the biggest challengee....some just never get it so don't drive yourself crazy trying to make them get tested... Suggesting is one thing but telling people they have this is one most don't want to hear, even though you are trying to save them grief that you had to go through...They would rather shoot the messenger......

Now don't feel bad about missing pizza & such. They are all available gluten-free & some better than there wheat version.. You may have to do mailorder to get some of the best of the best but its worth it...if you are craving something just ask , we will lead you to the best....

Thank goodness you got dx'd... I know some who didn't get dx'd until in their eighties. They spent their lifetime being ill so its not when you get dx'd its that you finally know what you have & move on so you can enjoy the balance of your life. And for me it was finally knowing I wasn't crazy & my illness was not in my head!!!!

You have a great outlook & I'm sure you will do well.

Yes, do have your children tested..Remember there is no test for gluten sensitivity, just trail & error but celiac testing through blood work, biospy, & DNA testing...

Good Luck

blessings

mamaw

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Yes, you pretty much nailed it. However im 40 and refuse to believe it's more than half over.

Maybe when you feel better you'll feel that way too!


Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.

Hashimoto's DX 2005.

Gluten-Free since 6/2011.

DH (and therefore Celiac) dx from ND.

Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

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I'm right there with you.

I'm 48.

Grieving the past and living for the first time.

It's bittersweet.

But some days it's only SWEET!

I did it!

Took me until 47, but I finally figured out what was making us sick for so long and without any support or help from those 25 Dr.'s I took us to.

His life will be so much different/better than mine was.

I feel like I just gave birth to both of us a year ago.

Sometimes I think "Are you kidding me? My whole life is gone...for nothing?" Just because of wheat?"

Then I move on and do something that I couldn't do all those years.

Your description of the emotional process is very good....it is all so true.


Healing is a matter of time, but it is sometimes also a matter of opportunity.

--Hippocrates

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Welcome, I know exactly where you're coming from. School PE was bad for me too! Who else do you know that would get an F in PE? I refused to dressout and workout because i hurt so bad and I would get physically sick if I did jumping jacks, situps, etc. I have had this since I was 8 years old that I know of and found out about all of this mess at the age of 44. Hang in there, you will get better.

Txplowgirl


Lupus, Connective Tissue Disease with Fibro type symptoms, Anemia, Anxiety, Depression, RA, Rynauds Syndrome, Chronic Fatigue Syndrome, Erosive Gastritis, Osteoporosis, Degenerative Disc Disease, Scoliosis, Bulging discs in lower back and neck, Pinched Nerves.

 

Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free

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HELLO Finally@45...

I'm COUGIE23....(thats not my age! I'm really 47 :D )

First of alll....that was a GREAT RANT!!!....(don't you feel a little better now!!!)

Second of all...YOUR IN THE RIGHT PLACE!!!! :D

Third....don't knock your age....it's not that bad!!!

I thought you'd be in you 80's the way you made it sound...

do you know how many people here have suffered for so long and didn't get diagnosed till they were in their 30's...40's...50's...ect.

theres teenagers here and perants and grandparents and probably a few greatgrand parents!!! :rolleyes: the point is everyone has their on story...and experiances...and even though our symptoms vary....from mild to extreame...we are all in this together!

We listen and we share....and it really helps!!!

(forgive me if I misspell things...and have gramer problems... I have a nerological issue from this and can't remember half the time the correct spelling...go off on tanents...or see correct spelling :rolleyes: that looks worse "magicaly" AFTER I POST!!! OOOPPPS!!!! LOLAnyways...WELCOME!!!

Any questions? this is the right place!!! :D:D:D:D:D:D:D


Cougie23

Diagnosed 8/3/11

Celiacs/casein sensitive/lactose intolerent

Favorite quotes-

"I know you think you understand what you thought I said,

But I'm not sure you realize that what you heard is not what I meant!!!"-anonyamous

"you can lead a donkey to the river...but if you want him to drink...

you have to throw him in" -(21 yr.old son)

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Welcome, I know exactly where you're coming from. School PE was bad for me too! Who else do you know that would get an F in PE? I refused to dressout and workout because i hurt so bad and I would get physically sick if I did jumping jacks, situps, etc. I have had this since I was 8 years old that I know of and found out about all of this mess at the age of 44. Hang in there, you will get better.

Txplowgirl

Thats interesting...I got F's in P.E too and exersiceSTILL makes me ill!!! LOL

But sereously joking aside...(I also had asthma) I hadn't considered that a factor, but your right! I used to get such bad pains in my stomache and intestinal area...I was allways told it was probably growing pains and female problems that would correct themselves once I was alittle older and my body ajusted to being "A WOMAN"!!! :o:blink:

Now that I've been diagnosed and am starting to clear the gluten (and Casein) from my diet...a lot of myserious illness from my past makes sense!!!( I'm sorry...but no 6 yr. old should have migraines and fainting spells...no one EVER thought of testing me for FOOD allergies ..let alone..GLUTEN!!! :blink:


Cougie23

Diagnosed 8/3/11

Celiacs/casein sensitive/lactose intolerent

Favorite quotes-

"I know you think you understand what you thought I said,

But I'm not sure you realize that what you heard is not what I meant!!!"-anonyamous

"you can lead a donkey to the river...but if you want him to drink...

you have to throw him in" -(21 yr.old son)

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I might have everyone beat? LOL I was diagnosed just this year at the age of 68! Have been sick with it for about 10 years. A wonderful Dr. finally diagnosed it. It is a challenge, but I love to cook, always have experimented. And this is just another challenge to make delicious food for my husband that I can eat and my grandkids love too! Some successes, a few failures (that only I eat). So glad to have found this site! :)

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I might have everyone beat? LOL I was diagnosed just this year at the age of 68! Have been sick with it for about 10 years. A wonderful Dr. finally diagnosed it. It is a challenge, but I love to cook, always have experimented. And this is just another challenge to make delicious food for my husband that I can eat and my grandkids love too! Some successes, a few failures (that only I eat). So glad to have found this site! :)

Here's to your next 30 or 40 years of good health. :)


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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I might have everyone beat? LOL I was diagnosed just this year at the age of 68! Have been sick with it for about 10 years. A wonderful Dr. finally diagnosed it. It is a challenge, but I love to cook, always have experimented. And this is just another challenge to make delicious food for my husband that I can eat and my grandkids love too! Some successes, a few failures (that only I eat). So glad to have found this site! :)

Good for you Patriciamae :D ...You have a great aditude!!! Keep on cooking and WELCOME!!! :P:P:P:P:P


Cougie23

Diagnosed 8/3/11

Celiacs/casein sensitive/lactose intolerent

Favorite quotes-

"I know you think you understand what you thought I said,

But I'm not sure you realize that what you heard is not what I meant!!!"-anonyamous

"you can lead a donkey to the river...but if you want him to drink...

you have to throw him in" -(21 yr.old son)

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Hi, I am a new member, and I thought it was interesting to see how many of us are older when we are diagnosed. Just thought I'd share something with you all. I am diagnosed (last month)only because my Mother was first. Oh.... yeah and I should add that I am 50 years old and she is 80 years old. She has had 'classic celiac' symptoms her whole life.

In the month since she has been gluten free, she has felt, in her own words "Like a new woman"! (As have I, but that is irrelevant to this post!)

Thank you all for your posts and your humour!

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Blessing to you Finally @ 45. I've had stomach issues last 30 years, three years ago they got much worst. Finally diagnosed 10 days ago and sigh of relief now knowing whats wrong. Yep got to make life changes each day gets better. I'm looking forward to many years of good health now.

My children and siblings will all need to keep aware of their health. Makes you wonder Celiac is an Autoimmune Disease, Mom was diagnosed w/ Myasthenia Gravis 15 years ago, she as well of 3 of my siblings have Thyroid Disease. My younger sister w/ Thyroid problems also had to have her Gallbladder out 2 years ago and still suffers everyday, thankfully she was tested this past week and waiting for blood results.

Good luck and health to you.

Cathey

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Love your 12 "steps"! perfect!!

I'm one of the "over 40s" (doctors who think celiac is never DXed in older people need to be schooled! :angry: ) I had symptoms and complications from gluten all of my life. So much sadness and pain, and yet, I never put it all together until I learned about celiac. Finally DXed at nearly 54 but only because I FIGURED IT OUT. ;) I was either going to be in a wheelchair, a mental health ward or dead before long...I was THAT bad.

I make progress (slowly) every month. I am regaining my life!! :)

But my MOM at 84 is the real amazing one. She started gluten-free a few months ago and feels GREAT! She realizes ALL of HER issues are because of this too. (My Dad had all the symptoms too, but it's too late for him, sadly) As she puts it "You're never too old to start feeling better" and of the rest in the family who will not be tested or try gluten free ? She says "Oh for heaven's sake, what's the problem? The gluten-free diet is not such a big damn deal" :lol:

You have the right attitude...and I hope you feel better soon!

Cheers,

IH


"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

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Hi, I am a new member, and I thought it was interesting to see how many of us are older when we are diagnosed. Just thought I'd share something with you all. I am diagnosed (last month)only because my Mother was first. Oh.... yeah and I should add that I am 50 years old and she is 80 years old. She has had 'classic celiac' symptoms her whole life.

In the month since she has been gluten free, she has felt, in her own words "Like a new woman"! (As have I, but that is irrelevant to this post!)

Thank you all for your posts and your humour!

Well, shoot, I can't compete with your mom :o - she really has me licked. Could give all the rest of you a good run for your money. :lol:


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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Well, shoot, I can't compete with your mom :o - she really has me licked. Could give all the rest of you a good run for your money. :lol:

but "shroomie"...in my mind, from the way you talk, you're so young!! ;)

As I say, it's not the years, it's the mileage.... :lol:

Sylvia posted a link to this article on another thread...you know how doctors say "older people" are never DXed with this? :rolleyes: They are so clueless.....maybe some of you would like to read it.

Article in Living Without Magazine --

(http://www.livingwithout.com/issues/4_17/senior_celiacs-2720-1.html)


"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

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When they say "You're only as old as you feel" I say "No, you're as young as you act" :P


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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When they say "You're only as old as you feel" I say "No, you're as young as you act" :P

then, I am 22 :lol:


"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

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I went to a round table last week, of the local Celiac group. I was the youngest one there by a long shot (and I'm 40). I know a few were in their 80's. Most had been dx'ed in the last 5 years.

I thought it was great to see so many people who obviously had NOT tossed in the towel and are still working to improve their health.


Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.

Hashimoto's DX 2005.

Gluten-Free since 6/2011.

DH (and therefore Celiac) dx from ND.

Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

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But my MOM at 84 is the real amazing one. She started gluten-free a few months ago and feels GREAT! She realizes ALL of HER issues are because of this too. (My Dad had all the symptoms too, but it's too late for him, sadly) As she puts it "You're never too old to start feeling better" and of the rest in the family who will not be tested or try gluten free ? She says "Oh for heaven's sake, what's the problem? The gluten-free diet is not such a big damn deal" :lol:

OH I definitely think you AND your mom are amazing! That apple didn't fall far from that tree :)


TTG >200 (normal <10)

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

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OH I definitely think you AND your mom are amazing! That apple didn't fall far from that tree :)

Ada, wow, you made my day, my week, hell, my month!...thanks, what an incredibly sweet thing to say. :) Just what I needed to hear today. :D


"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

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Love your 12 "steps"! perfect!!

I'm one of the "over 40s" (doctors who think celiac is never DXed in older people need to be schooled! :angry: ) I had symptoms and complications from gluten all of my life. So much sadness and pain, and yet, I never put it all together until I learned about celiac. Finally DXed at nearly 54 but only because I FIGURED IT OUT. ;) I was either going to be in a wheelchair, a mental health ward or dead before long...I was THAT bad.

I make progress (slowly) every month. I am regaining my life!! :)

But my MOM at 84 is the real amazing one. She started gluten-free a few months ago and feels GREAT! She realizes ALL of HER issues are because of this too. (My Dad had all the symptoms too, but it's too late for him, sadly) As she puts it "You're never too old to start feeling better" and of the rest in the family who will not be tested or try gluten free ? She says "Oh for heaven's sake, what's the problem? The gluten-free diet is not such a big damn deal" :lol:

You have the right attitude...and I hope you feel better soon!

Cheers,

IH

Irish heart..your wonderful!!! :D:D:D


Cougie23

Diagnosed 8/3/11

Celiacs/casein sensitive/lactose intolerent

Favorite quotes-

"I know you think you understand what you thought I said,

But I'm not sure you realize that what you heard is not what I meant!!!"-anonyamous

"you can lead a donkey to the river...but if you want him to drink...

you have to throw him in" -(21 yr.old son)

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Irish heart..your wonderful!!! :D:D:D

ooooh....c'mon now, you're making me blush (that's not something I readily do...) I humbly appreciate your kind words.... :) cheers, IH :)


"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

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I hear you guys.....I am 48 and what I cansay looking back now, totally unaware at the time, is that for years I was slowly destroying my body with what I was ingesting. I was having the typical digestive issues until much later. It was the damage of a malnurished body that I was starting to feel and knew something was wrong. I had alot of denial, alot of frustration and feeling lost, wondering how this happened. It was great to finally have an answer but I even questioned the answer. In time there came acceptance. I absolutely do understand.


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.

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