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I Made An Interesting Discovery Today!


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8 replies to this topic

#1 justlisa

 
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Posted 17 August 2012 - 08:20 PM

For reasons I won't get into here, my full brother and I did not speak for a very long time (family dynamics...sigh). However, approximately 4 years ago, he found me on facebook and sent me a friend request... We've been friends on Facebook ever since...

So, lately, I've been posting a LOT about celiac/gluten intolerance/gluten free/etc. Today, I posted about how my dogs went gluten free when "mom" did.

My brother posted a very long comment about celiacs and how HE was dx 3 years ago... Blew me away!

I mean...once I started figuring out what my problem was (because the docs couldn't), I could easily see SO MANY "gluten" connections with my dad, grandmother, aunt, cousin, etc... (IBS, thyroid, etc, etc).

To hear about his dx...well, it just hit me, you know? I mean I can't tell you how many times I've heard, "there aren't any celiacs in the family"...yada yada yada.

Anyway, I just had to share this...
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#2 icm

 
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Posted 18 August 2012 - 02:01 AM

Lots of people are in denial about it. They often don't "want to know". (sigh)
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#3 squirmingitch

 
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Posted 18 August 2012 - 06:32 AM

Wow. What a surprise Lisa. I too see celiacs but they don't want to know about it. When I found out about myself I did look up my nephew sort of long lost b/c of my sister & my horrid relationship. I wanted to let my nephew know especially as he has a child of his own now. I can only give the information & then hope they have enough sense to watch for signs & heed them when/if they come.

When I contacted my nephew, he informed me my niece had died a few months prior. I loved her & we got along very well but she was having a "rough life" & it was hard to get in touch with her. All things considered when everything came to light --- I have no doubt my niece was a celiac.
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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#4 1desperateladysaved

 
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Posted 18 August 2012 - 07:09 AM

I think it is our responsibility to inform family. However, they may not believe us. So, please if you don't talk with your extended family let them know. I sent e-mails to some and papers to others. They might be suffering too. They may have no reason to check for Celiac.
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#5 moose07

 
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Posted 22 August 2012 - 01:06 AM

Not that I would wish celiacs on anyone but it would be kind of nice to have a family member that unerstood my plight. But like other responders said my family is denial. I'm pretty sure my mom has it but she won't get checked for it. That is a neat discovery for you though!
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#6 frieze

 
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Posted 22 August 2012 - 06:16 AM

For reasons I won't get into here, my full brother and I did not speak for a very long time (family dynamics...sigh). However, approximately 4 years ago, he found me on facebook and sent me a friend request... We've been friends on Facebook ever since...

So, lately, I've been posting a LOT about celiac/gluten intolerance/gluten free/etc. Today, I posted about how my dogs went gluten free when "mom" did.

My brother posted a very long comment about celiacs and how HE was dx 3 years ago... Blew me away!

I mean...once I started figuring out what my problem was (because the docs couldn't), I could easily see SO MANY "gluten" connections with my dad, grandmother, aunt, cousin, etc... (IBS, thyroid, etc, etc).

To hear about his dx...well, it just hit me, you know? I mean I can't tell you how many times I've heard, "there aren't any celiacs in the family"...yada yada yada.

Anyway, I just had to share this...

And the neuro/psych aspects of celiac may account for some of your relationship issues....
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#7 kittty

 
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Posted 22 August 2012 - 08:25 AM

I have a cousin who was constantly sick with stomach problems when we were little. She was always going in for medical tests, and going on restricted diets. I don't think they ever found the cause, or if she feels any better today (we live in different countries so rarely talk). My mom has had many medical issues, including hyperthyroid where she lost an extreme amount of weight, but she hasn't had the stomach issues.

I've also been posting articles and things on Facebook, so hopefully they'll see and possibly a lightbulb will go off. If 1 in 100 Caucasians has Celiacs, then statistically there must be at least one more person on my friend list with the illness.
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#8 Sunny600

 
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Posted 23 August 2012 - 12:01 PM

I think my son, who is 19 years old, struggling with ADD and depression, neither going to school not able to bring himself to apply for jobs, constantly on the toilet and suffering from stomach aches, has it too, but he refuses to be tested. He say s that if he finds out he does, then he'll start thinking he has problems when he really doesn't (yeah, right, like he doesn't already have problems) and he doesn't think he could live without eating gluten. I want to ask his doctor to test him anyway the next time he goes in for ADD meds, but I don,t know if I can do that since he is legally an adult.

I also wonder if my dad, who died of Alzheimer's at the age of 67 might have had it.....but I don't know.
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#9 IrishHeart

 
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Posted 26 August 2012 - 06:43 AM

I could easily see SO MANY "gluten" connections with my dad, grandmother, aunt, cousin, etc... (IBS, thyroid, etc, etc).

I can't tell you how many times I've heard, "there aren't any celiacs in the family"


Once I was DXed, both my parents' health histories made sense. My Mom went gluten-free at age 84 and is doing very well! She has more energy than I do. Off 9 years of GERD meds, no need for medications except a low dose of thyroid med. No more heart palps or high BP.

Sadly, it's too late for my Dad. He was a walking celiac if there ever was one.

I wrote to my entire extended family about celiac and gluten intolerance and how it was connected to all of their various AI diseases and depression and anxiety, etc. No takers. They saw me almost dying from this thing for 3 years, but I do not think they want to give up gluten, period. I begged my siblings to be tested. Nope. I have stopped nagging.

As for the "there aren't any celiacs in the family!!" line?

Well, SOMEONE has to be DXed first for that to be a valid issue in a family's health history. I was first, but I am not the last, I have no doubt.
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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.
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