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So Far.......so....weird?


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25 replies to this topic

#16 ravenwoodglass

 
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Posted 14 February 2011 - 09:57 AM

I was diagnosed 2 weeks ago by my new internist. She actually LISTENED to my loooooong history and immediately said "I'm going to test you for Celiac/Sprue." Came back positive and I am now on a gluten free adventure!

Talk about being misdiagnosed for years? I will be 72 years old in a few weeks and have been sick much of my life!!!!

Hindsight is 20/20.

Thanks for all the support and answers I've already found on this site! I'll be around a lot!

Gentle hugs around the room!
Mary Ellen



Welcome to the board. Gee I thought I had the record for misdiagnosis at over 40 years! :blink: I am soooo glad they finally figured this out for you. It is a big change but it will be so worth it. Ask any questions you need to and I hope you heal quickly.
  • 1
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)

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#17 Cypressmyst

 
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Posted 14 February 2011 - 01:43 PM

Yup, for every person who scoffs and thinks you are a nut-case there is another who listens and gets their life back.

Worth annoying a few folks I think. :) I'm sure glad my cousin talked to me, even when I did not immediately want to hear it. It did sink in and life is so much better now. B)
  • 0
Grain Free
Casein Free
Soy Free
Refined Sugar Free
Preservative Free
Free Range
Free Willy
Freedom's just another word for nothin' left to lose...

...dang...there goes chocolate... :bawl:

#18 yolo

 
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Posted 14 February 2011 - 08:19 PM

I am really enjoying reading the recent comments on this thread. Sometimes I feel a little overwhelmed since a number of my siblings are in denial about their likely gluten intolerance -- and my mother is adamant in insisting she outgrew celiac/sprue when she was 18. I just can't change them. They would have to want to and they don't and won't. however there are plenty of other people I have helped--including my boyfriend and by extension several members of his family as well as some of his associates. His symptoms were more migraines and ADHD. His father had DH and treated his symptoms by drinking too much alcohol.
The lesson is those who listen will and those who won't won't--however the benefits of the crowd that listens far outweighs those that think we're nuts. And honestly the proof is in who is healthier and happier after all.
Bea
  • 2
Diagnosed celiac sprue as infant: failure to thrive & pneumonia-back on grains age 4. Began herbs 1971 combating chronic kidney disease/general ill health 1973. Avoid wheat family and "allergens" by 1980. Late 80's doc. diagnosed candida: cave-man diet. Diagnosed degraded myelin sheath 2006; need co-enzyme B vitamins. Discovered celiac fall 2007; finally told diagnosis as infant. Recently found I am salicylic acid intolerant. Ironically can't tolerate most herbs now. Can now eat brown rice & other gluten-free grains (except corn) & even maple syrup & now homeopathic medicine works! Am still exploring the shape of this elephant but I've made progress!

#19 IrishHeart

 
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Posted 15 February 2011 - 07:37 AM

Add me to the group! :D

A lifetime of clueless doctors, horrible pain, illness, miscarriages, surgeries, "oh, it's JUST IBS--take these drugs", "oh, it's probably fibro--take these drugs"...severe sudden weight loss, hair loss, lost muscle mass, teeth yellowing decaying rapidly, osteoarthritis...on and on...one doctor put me on METHOTREXATE because he insisted I needed it to feel better(despite no RA or lupus ) I was so desperate for relief from the pain, and at my family's urging, I reluctantly tried it and was sick and lived in the bathroom for a week. Another wrong road.There's more-- but why preach to the choir?--you have all LIVED it!

I aged ten years in 2. No one could explain why I was deteriorating in front of their eyes?

THOUSANDS of $$$ spent on treatments, doctors, supplements, MRIs, XRAYs, Scans, scopes,pain clinics, ANYTHING to get well....nothing worked.

I've been poked, prodded and given dangerous drugs that did nothing except cause MORE pain and suffering.
Nothing changed...I got worse!!... until I couldn't think straight or sit, lie down or stand without searing pain...I was in hell.

Until I diagnosed myself and had a GP doc confirm. (this is after asking repeatedly for 1 year for someone to hear my pleas about celiac and having a NEG panel)

gluten-free and 6 weeks later, and I no longer have raging anxiety or brain fog that scared me to death. I have so much HOPE now!! :D

ANGRY at the medical profession for years of misdiagnosis? YOU betcha!

But I offset that anger by educating others on the dangers of gluten. My own family has been the hardest to convince and they are all burdened with autoimmune diseases. They are all in denial. When I am truly healed, maybe they will see the light.

Fortunately, despite the pain, illness and fear, I had a great husband to support me. I know how blessed I am, believe me!! And above all else, I never lost my desire to get my life back or my sense of humor...although most days, it wasn't very funny at all. Some days were very dark. When I say I will write a book, I mean it. People need to know what's killing us all.

All of you are my inspiration!

When you arrange that cruise, please count me in!! LOL
hugs to all!!
  • 2

"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


#20 notme!

 
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Posted 15 February 2011 - 09:33 AM

congratulations :) to everybody! i just turned 48 last week (misdiagnosed for 25 years) and have been gluten free since july - i feel *awesome*!!! i can't tell you how many people have come up to me and told me how wonderful i look! (now, i'm taking this as a compliment lol i must have looked awful before) people ask me "did you color your hair?" "what's different??" etc - sunday my daughter told me i look 10 years younger :) yes, i missed alot of time being sick for no apparent reason... but i'm better now so i'm not going to be wasting any more time pining or being angry - woohooo i feel great!! :D ps - didn't notice how bloated i was until it disappeared.... pps - i can go on that cruise if it's FREE lol
  • 3

arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#21 jenngolightly

 
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Posted 15 February 2011 - 06:05 PM

I was once diagnosed with Multiple Sclerosis and for years believed I had MS. I have B-12 deficiency, too, and must do monthly injections. I have asmthma. And acid reflux. I have been to every doctor and had every test. I've had aches and pains, blood sugar issues, brain fog, irritability, bloating, fatigue and insomnia for so long that I don't know what life is like without it.

It only occcured to me a few weeks ago that this could ALL be wheat related when I realized on a few separate occassions that sandwich bread and pizza made me brain fogged, sick and gassy.

So, as an experiment, I gave up wheat for a few days. And my whole life changed. Over night. Maybe instantly. No more brain fog. No more gas. No more bloating. More energy. Reduced acid reflux. I'm breathing better. I'm not feeling crazy and moody! The list goes on.

I was on the Montel Williams show once for a piece I wrote on MS! I was very active in the MS community. But I started to realize after several years that it must be something else...my issues didn't seem to follow an MS-like pattern.

Why did not ONE doctor in the last twenty years mention wheat sensitivity? And with all the research I've done, why didn't it occur to me? I literally had no idea this might be a problem, and yet everything I look up in regards to wheat sensitivity, I see my own symptoms time after time.

I haven't felt well my whole life! And now, at the age of 48, I am suddenly getting it?

I plan to continue to be gluten-free for two months..and by then, I am sure I will be able to self-diagnose to some degree. I am not sure that I want to be gluten-challenged because even after a week without gluten, I know I never want to feel the way I used to!

But, right now I am feeling mad.

If I could only recount the hours I spent, the money I spent, the time and effort and tears and difficulty...and the whole time....it was an allergy, maybe?

I have lost years here.

Days when I couldn't think straight and then the next day I'd be better.

Weeks lost. Months lost. Years lost, when I add them up.

If this indeed is what is wrong with me.... I vow to spend the rest of my life educating doctors!

For now, I can't tell you how nice it is to look down at my stomach and not look four months pregnant!

Lighter on my feet today.

Lighter in my life.

Your story hits a nerve for a lot of people. It takes a long time for most of us to get the right diagnosis because Celiac (wheat sensitivity) presents itself so differently in everyone. There was a time when I was also thought to have MS and that was one of the hardest for me to emotionally cope with. I has so many specialist doctors, and no one talked to each other. But I was taught that doctors know best and to follow their orders. Finally, in 2007 I had to get a new pcp for insurance reasons and she reviewed all of my history and immediately suspected Celiac... I'd never heard of it before. I no longer see any specialists, just my lovely pcp. I've also learned to question diagnoses and to research everything. I admire your passion to educate doctors - it sounds like you have the background to be able to do that well.
  • 1
Jenn
dx celiac 9/2007: gluten-free 9/2007
corn intolerant: corn-free 5/2010
nut allergy: nut-free 8/2010

#22 IrishHeart

 
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Posted 15 February 2011 - 06:09 PM

congratulations :) to everybody! i just turned 48 last week (misdiagnosed for 25 years) and have been gluten free since july - i feel *awesome*!!! i can't tell you how many people have come up to me and told me how wonderful i look! (now, i'm taking this as a compliment lol i must have looked awful before) people ask me "did you color your hair?" "what's different??" etc - sunday my daughter told me i look 10 years younger :) yes, i missed alot of time being sick for no apparent reason... but i'm better now so i'm not going to be wasting any more time pining or being angry - woohooo i feel great!! :D ps - didn't notice how bloated i was until it disappeared.... pps - i can go on that cruise if it's FREE lol




Hi NOT ME!
Thank you for this post!! I look and feel dreadful (nothing like I did just 2 years ago) BUT every time I read someone's post that says they feel "Awesome" , I am INCREDIBLY encouraged!! Good for you!! I agree---I missed 3 years of my life -- and once I feel better, I am going to take hubby and just TRAVEL and do whatever we feel like!! I guess I hold a bit of anger because my primary care doctor's own children have celiac and he didn't see what was right in front of him for so long. I was in his office repeatedly for so many horrible symptoms, but he kept sending me to specialists.....and I consulted a few on my own. If I had not been my own best advocate, endlessly researching, I wonder if the +scooter" one smug doctor suggested I get wouldn't be under my butt right now.

And the PC doc? I forgave him. I need my energy for healing. ;)

Not sure I can afford the cruise either, but it IS a great idea!! LOL

Enjoy your new good health!!
  • 0

"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


#23 MEH

 
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Posted 16 February 2011 - 02:12 AM

Thank you all so much for these amazing replies. I am just flabergasted by how much everyone has gone through in their lives.

It's so wonderful to be potentially on the road to healing!

I look forward to being a part of this community....and to feeling better once again...
  • 2

#24 ravenwoodglass

 
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Posted 16 February 2011 - 04:43 AM

congratulations :) to everybody! i just turned 48 last week (misdiagnosed for 25 years) and have been gluten free since july - i feel *awesome*!!! i can't tell you how many people have come up to me and told me how wonderful i look! (now, i'm taking this as a compliment lol i must have looked awful before) people ask me "did you color your hair?" "what's different??" etc - sunday my daughter told me i look 10 years younger :)


Amazing isn't it. I ran into someone I hadn't seen in years a few days ago. Her nickname for me was 'Bones' her first comment after a big hug was 'Your not bones anymore you look great!!!'. The funny thing is I actually weighed more back then but it was all bloat. :)
  • 1
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)

#25 Judy3

 
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Posted 16 February 2011 - 06:34 PM

Sign me up, especially if there are some older unattached nice guys that are going. ;) :D


Hey I'm all for the older unattached nice guys!!! :P
  • 0
*Judy

Food allergies to fish, seafood, tree nuts, aspartame(Equal),flax seed, and many drugs
Stomach issues since childhood
Hypoglycemia (low blood sugar) age 6-44
Diabetes age 44 to present now going back to Hypoglycemia since gluten free.
Diagnosed with Fibromyalgia in 2005 and it's gone now that I'm aspartame and gluten free. Hmmm
Celiac disease- negative test in 2009, positive tests in Nov. 2010
Gluten free started 11/08/2010
Genetic tests positive- DQ2, positive -DQ6 (?) negative- DQ8 11/15/2010

#26 Judy3

 
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Posted 16 February 2011 - 06:42 PM

I was diagnosed 2 weeks ago by my new internist. She actually LISTENED to my loooooong history and immediately said "I'm going to test you for Celiac/Sprue." Came back positive and I am now on a gluten free adventure!

Talk about being misdiagnosed for years? I will be 72 years old in a few weeks and have been sick much of my life!!!!

Hindsight is 20/20.

Thanks for all the support and answers I've already found on this site! I'll be around a lot!

Gentle hugs around the room!
Mary Ellen

Welcome Mary Ellen - You win the prize for longest misdiagnosed years I think. WOW thought 53 was a long time. Anyway welcome to the journey may the rest of your years be pleasant and pain free!!
  • 0
*Judy

Food allergies to fish, seafood, tree nuts, aspartame(Equal),flax seed, and many drugs
Stomach issues since childhood
Hypoglycemia (low blood sugar) age 6-44
Diabetes age 44 to present now going back to Hypoglycemia since gluten free.
Diagnosed with Fibromyalgia in 2005 and it's gone now that I'm aspartame and gluten free. Hmmm
Celiac disease- negative test in 2009, positive tests in Nov. 2010
Gluten free started 11/08/2010
Genetic tests positive- DQ2, positive -DQ6 (?) negative- DQ8 11/15/2010




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