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Too Old For A Diagnosis?
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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.

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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!

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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.

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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

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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

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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:

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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. :)

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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

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

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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

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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:

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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)

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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

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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:

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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.

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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 :)

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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

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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

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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 :)

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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

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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.

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    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
    • Along those lines, many Americans are now pursuing gluten-free eating. Gluten ... Diagnosis of celiac disease typically requires a history and physical ... View the full article
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