Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Too Old For A Diagnosis?
0

28 posts in this topic

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.

2

Share this post


Link to post
Share on other sites


Ads by Google:

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

1

Share this post


Link to post
Share on other sites

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!

2

Share this post


Link to post
Share on other sites

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.

2

Share this post


Link to post
Share on other sites

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

1

Share this post


Link to post
Share on other sites




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

1

Share this post


Link to post
Share on other sites

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:

1

Share this post


Link to post
Share on other sites

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! :)

2

Share this post


Link to post
Share on other sites

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. :)

1

Share this post


Link to post
Share on other sites

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

1

Share this post


Link to post
Share on other sites

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!

1

Share this post


Link to post
Share on other sites

Great posts on this thread! I was diagnosed at 53 and can really relate to Finally@45.

1

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

1

Share this post


Link to post
Share on other sites

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:

0

Share this post


Link to post
Share on other sites

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)

0

Share this post


Link to post
Share on other sites

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

1

Share this post


Link to post
Share on other sites

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:

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
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 :)

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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 :)

0

Share this post


Link to post
Share on other sites

Wow, I was 33 when I was Dx 10 years ago. I thought I was a late-bloomer!

Yup, absolutely: you're never too old to start feeling better. That's so true.

Here's to your health! (A toast for those of us who are definitely old enough to drink!)

TK Kenyon

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,647
    • Total Posts
      921,596
  • Topics

  • Posts

    • Tell your medical doctor that you want a full Celiac panel before you go gluten-free.  A family history of Celiac should be enough reason to run one every couple of years.  The stool tests aren't considered medically valid, so they probably won't accept those.  It would be good to know if you actually have Celiac.  That would tell you how careful you have to be with gluten consumption.  If you don't have Celiac, it will make your life easier...you can still be gluten-free but you might be able to do things like take a burger off a bun and eat at most restaurants safely.
    • Sure, if you are feeling better from the Celiac, now you might notice other things you didn't before.     a very real possibility is that you have changed your diet and are now eating something you didn't eat much of before.  Or you are eating larger or smaller amounts of protein or fiber....that sort of thing
    • This board is quite old but I'm hoping someone can continue on this topic. I am 61 years old and in all my life and doctors' visits, I have never had a western doctor ask me if I have a family history of celiac or suggest a gluten free diet. In all honesty, I have only started having what could be considered "gluten sensitive" symptoms within the past 2 years - chronic, unexplained bouts of diarrhea, mainly. Although bloodwork has shown in the past 2 years I now have high cholesterol, blood sugar, blood pressure and a bone density scan showed osteopenia. My PCP put me on meds for everything, of course. I recently began seeing a naturopath - and when I was running down my health history and list of symptoms she immediately asked about the family history of celiac. My father was positively diagnosed, through biopsy, with celiac sprue about 25 years ago, when nobody talked about gluten sensitivity. Anyway, she had me do the full panel testing at Enterolab. I have one celiac gene and a gene that indicates neurological manifestations of gluten sensitivity (I have long been plagued with panic attacks and depression). I also showed extremely high (215 units, below 10 is normal) for fecal anti-gliadin and varying high results for dairy, eggs and soy. My fat malabsorption stool test also tested high (431 units and normal is less than 300). The interpretation from Enterolab and my naturopath both strongly advised I eliminate gluten from my diet for the rest of my life. Naturopath said after a year or two I may be able to try introducing limited dairy, eggs and soy back; but not until the glutin response is completely under control. I am really struggling with this. Everyone I've talked to (including adult children, spouse, other family members, friends) is skeptical about me making such a radical change in my (our) diets based on these results. They seem to view gluten sensitivity as a "fad" and think I am going off the deep end. "Get a second opinion" - or "talk to your PCP about it". I've read enough to know that my PCP will not be of much help. And since I really only had one irritating symptom that could be related to gluten sensitivity, it's not like my life will be radically improved by going gluten free. I guess I could choose to ignore the test results - for now. I'm trying to view going gluten, dairy, egg and soy free as preventative and something that will contribute to a healthier life as I age. But it's so hard ... especially when the people who mean the most to me think I'm over-reacting and kind of cuckoo. Can anyone help me out here? I feel so alone ...  
    • Hello everybody, I'm new to the forum but am so happy to have found somewhere where people living with coeliac can share their thoughts! I've only been gluten-free for two weeks.  About three days in, I started experiencing awful heartburn which hasnt let up and I'm wondering if anyone else had this after giving up gluten? It wasn't a typical symptom for me before so feeling very uncomfortable.  I am not due to see my gastro consultant again until December and my GP (who was about as helpful as a chocolate teapot!) just gave me lansoprazole (its a PPI) which isnt even touching it.  Just wondering if giving up gluten is unmasking other symptoms or if this is a normal or common withdrawal effect?  I feel like burping/belching could help but its something I've never been able to physically do. Im in my early 30s so hoping its not another thing... Any advice would be appreciated A
    • O sorry. Negative biopsy. But this was months ago but i have no energy. My teeth are rotting i feel sick all the time. And i was told by someone who has celiac that it can also be difficult to have a diagnosis cause you would have to eat 6 pieces of bread for 6 weeks in order to get a proper diagnosis. And i just know that something is up
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,653
    • Most Online
      3,093

    Newest Member
    KerryO
    Joined