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Lost A Parent To Celiac


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22 replies to this topic

#1 dani nero

 
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Posted 19 May 2013 - 11:27 PM

Hello everyone! Many of you might not remember me. I was very active on these forums about a year ago. I then decided that it was time to change the habbit of eating, sleeping and breathing celiac disease, because I was doing nothing else but reading and writing about it.

I am feeling much better now that I have been on the diet for over a year, and it's all thanks to the people here. I'm not sure if you are still around but thank you!

 

I have sadly lost my mother back in february, and I have reason to believe it's due to an undiagnosed celiac condition, but I can't be sure because they did not do a biopsy on her. I'm wondering if I'm right about this so I'm wondering if anyone else knows someone who passed with similar symptoms.

 

I would firstly like to say however that this is a painful subject for me, so I beg that everyone would  not use this topic as an example or evidence to proving that celiac disease takes lives if untreated just to feel better about being confirmed and right about taking it seriously.

 

In any case, my mother passed away quickly in her sleep. She had been complaining about nausia  for a long time. Her blood tests showed that her potassium levels have been way too high due to kidney failure, and the amounts of potassium had caused her heart to stop, they also concluded that she had a minor clot traveling through her body which landed in her brain. They never said which came first however, the clot or the heart attack. She used to be a heavy smoker, but was on her way to quitting for about a year prior to her passing. I don't know if it's the smoking, or the kidney failur, or if it's both. I'm wondering if anyone knows of celiacs who developed clots?

 

I forgot to mention that she was just over 60 years old


Edited by dani nero, 19 May 2013 - 11:29 PM.

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#2 ravenwoodglass

 
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Posted 20 May 2013 - 02:55 AM

So sorry to hear of your loss. I think there are likely many of us who have lost parents to causes that may be linked to celiac. I lost my Mom young to cancer and lost my Dad last month. Since I have two copies of the same celiac gene both of my parents also had that gene. My Mom undoubtedly was an undiagnosed celiac. Her symptoms were the same as mine became before diagnosis. She also suffered for years. When I got my Dad's death certificate I found that he had bled to death from a GI bleed. I don't know if blood clots are associated with celiac but kidney issues can be.

I do know that my GI doctor told me that if I hadn't been diagnosed when I was I would have been 'one of those celiacs diagnosed by autopsy.

I know you are suffering and nothing any of us can say will ease your pain. Know that you are in my thoughts.

(((((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))))))))))


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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)

#3 dani nero

 
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Posted 20 May 2013 - 03:03 AM

So sorry to hear of your loss. I think there are likely many of us who have lost parents to causes that may be linked to celiac. I lost my Mom young to cancer and lost my Dad last month. Since I have two copies of the same celiac gene both of my parents also had that gene. My Mom undoubtedly was an undiagnosed celiac. Her symptoms were the same as mine became before diagnosis. She also suffered for years. When I got my Dad's death certificate I found that he had bled to death from a GI bleed. I don't know if blood clots are associated with celiac but kidney issues can be.

I do know that my GI doctor told me that if I hadn't been diagnosed when I was I would have been 'one of those celiacs diagnosed by autopsy.

I know you are suffering and nothing any of us can say will ease your pain. Know that you are in my thoughts.

(((((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))))))))))

 

I am so sorry for your loss (((((((((((((((((((((((((((((((((((((((((((really big hug))))))))))))))))))))))))))))))))))))))))))). This is just something that we will never get over and will have to learn to live with their memories. Yes I recall reading many posts by people who have lost parents from celiac, and I feel for all of them.

 

My father recently told me that he also has internal bleeding, and that the doctors don't know why. He's going to undergo some testing next month so I really pray that they would figure it out. I have sadly no credibility with my family, and if I once again state that even my dad might have celiac just as I did with my mum, they will definitely think that I associate everything with celiac.


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#4 1desperateladysaved

 
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Posted 20 May 2013 - 05:28 AM

Sorry to hear of the early loss of your mother.  I have genes on both sides of the family also.  Sadly my mother is ailing.  I discovered our  genetics just about the time she stopped being able to cook successfully.  It is a helpless feeling.  Sorry, again you had to watch .

 

Neither of my parents have known clots.  Dad is 82 and Mom 72,

 

Thanks for letting us know, I was wondering where you were.

 

Diana


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#5 Adalaide

 
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Posted 20 May 2013 - 06:18 AM

I'm very sorry about your mom. It is difficult to watch someone you love suffer and know that you can't help them because they won't listen. If you know who your father's doctor is you could write a letter to him and request that he doesn't mention the letter to your father but tests for celiac. Maybe if a doctor mentions it to him he'll take it seriously. It may seem underhanded, but at this point with your father's health I don't think there is a better option. I do remember all the struggles you had with this. I hope they find an answer quickly so you can have your father with you for many years to come.


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#6 pricklypear1971

 
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Posted 20 May 2013 - 06:28 AM

Dani, it's good to see you again.

I'm so sorry to hear about your mother.

All I can do is echo RWG's confirmation that there is known kidney and liver involvement with celiac disease. Overall, celiac disease is known to cause disruption throughout the body, including the brain.

In my family there is known dementia - and has been named Alzheimer's. I wonder......

There is also known hypothyroidism, and some stroke history. Also, an intestinal blockage....

Both sides of my family exhibit symptoms that can be considered autoimmune and/or Celiac Disease. It is heartbreaking to look at them, knowing what is probably wrong...and listening to them complain about symptoms (while they look at me and think I have problems) and continue to not be tested for celiac disease or other AI issues.
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#7 cap6

 
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Posted 20 May 2013 - 06:30 AM

So very sorry to hear of your loss.  Loosing one;s parent is so hard.  

I lost my mom five years ago at the age of 77.  Looking back I firmly believe she was undiagnosed celiac.  With Fibromyalgia, diabetes, unbearable excema (DH) on elbows and knees, bouts of constapation/diarrhea, vomiting and stomach cramps after meals, asmtha to mention just a fewof her issues - all of the classic signs of celiac.   She also had weak lungs, had even had a surgery at one point.  She did not habve lung clots, but her body just slowly shut down.

 Three years after loosing mom I was finally diagnosed.  Often dad will comment on one of Mom's sysmptoms and say how much alike we are.  I now wonder how far back this disease went.....My mom's mom was diabetic & had asthma....  the cycle goes on.


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#8 dilettantesteph

 
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Posted 20 May 2013 - 06:35 AM

I remember you and am sorry for your loss.  My mother died at 47 from what I think could have been due to undiagnosed celiac disease.  She had many of the symptoms and it is likely genetically since I am super sensitive.  It wasn't from blood clots though.  I think that they are linked to smoking.http://www.netdoctor...smokehealth.htm


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#9 IrishHeart

 
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Posted 20 May 2013 - 06:37 AM

Hi Dani and yes, of course we remember you, hon and I am glad to hear you are feeling better.  

 

So sorry to hear about your Mom.  :( My heartfelt condolences to you.

 

My Dad had kidney disease,  tanked hemaocrits requiring hundreds of blood transfusions for many years

and a whole slew of GI issues, h.pylori, etc. and  he had a heart valve replaced.

Was he a celiac? yeah, we're sure he was!!!. I have genes from both parents too. 

He died just as I presented with the worst symptoms I acquired and started my 3-year slide into hell. 

 

If I had only known back then what I know now, I might have saved him. I try not to think this way as nothing can be done about it 

and it is too painful to think about and beat myself up over it..

 

The good news is, once I was diagnosed, my Mom read the info I sent her and she went gluten-free and she feels fantastic. She took the genetic aspect seriously and  realized her lifelong issues were gluten-related. Her doctor gave her kudos for doing it and she could not be any healthier. She's 86 and walks faster than I do. 

 

I hope your Dad considers going gluten-free, but sadly, family members who do not want to be tested cannot be pushed too far. I had some tell me to

stop talking to them about it because they "aren't me". (No matter they all have  GI symptoms, depression and bunches of AI diseases) They refuse to make the connection in their heads and step away from the bagels.


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"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


#10 Jestgar

 
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Posted 20 May 2013 - 06:58 AM

So sorry Dani and RWG.  I just wanted to offer some hugs to both of you.

 

{{{{{{Dani}}}}}}}

 

{{{{{{RWG}}}}}}}


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#11 notme!

 
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Posted 20 May 2013 - 07:44 AM

i remember you, dani - so sorry, sweetie :(  i believe my grandfather died of untreated celiac, he had intestinal cancer that spread everywhere before they even knew he had it.  he always had 'bathroom issues' - he was 82.  my mother, who never smoked a day in her life, hardly drank, etc, died of lung cancer.  i never questioned or made the connection because i was diagnosed with celiac years after she was gone.  but maybe if i had known she might have had it checked.  (it certainly would have made her feel better that i finally found out what was wrong with me all the years she worried like crazy about me..)  

 

saying a prayer for you and your family.  (((((hugs))))))


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#12 IrishHeart

 
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Posted 20 May 2013 - 09:14 AM

So sorry to hear of your loss. I think there are likely many of us who have lost parents to causes that may be linked to celiac. I lost my Mom young to cancer and lost my Dad last month. Since I have two copies of the same celiac gene both of my parents also had that gene. My Mom undoubtedly was an undiagnosed celiac. Her symptoms were the same as mine became before diagnosis. She also suffered for years. When I got my Dad's death certificate I found that he had bled to death from a GI bleed. I don't know if blood clots are associated with celiac but kidney issues can be.

I do know that my GI doctor told me that if I hadn't been diagnosed when I was I would have been 'one of those celiacs diagnosed by autopsy.

I know you are suffering and nothing any of us can say will ease your pain. Know that you are in my thoughts.

(((((((((((((((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))))))))))

 

 

Sorry to hear about your Dad, Raven. Hugs and love to you. 


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"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


#13 nvsmom

 
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Posted 20 May 2013 - 09:26 AM

(((HUGS))) I'm sorry to hear of your loss. That's so young.  :(

 

I too lost a parent young (he was 42) and I suspect it was caused by possible celiac disease as well as by smoking. It was not is a manner similar to that of your mother so I can't offer any words of wisdom.

 

Best wishes to you and your family.


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#14 eers03

 
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Posted 20 May 2013 - 10:58 AM

Sorry to hear about your mom.  I lost my dad seven years ago this coming weekend.  The only thing I was going to mention is that certain medications affect potassium retention or excretion.  Blood pressure medicines can do this depending on the class.  ACE inhibitors, angiotensin receptor blockers, and direct renin inhibitors.  A lot of variables could have played a role, not just genetics.

 

I think if you have celiac disease it certainly increases the percentage risk that a relative has it but the overall odds are still stacked against it.

 

So, so, so, sorry.  Hang in there, miss.


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#15 dani nero

 
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Posted 21 May 2013 - 08:39 AM

Thank you all for the warm responses, and may all our lost and missed parents rest in peace.

Let's look after ourselves for their sakes.

 

I've also read your feedbacks as well on medications and symptoms, they were very helpful thanks.


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Also G6PD




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