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How To Notify Family


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48 replies to this topic

#31 Celtic Queen

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Posted 07 November 2011 - 12:57 PM

Learning the ropes and how to" punt" in a gluten- filled world is a bit rough, but if my 84-year-old Mom can do it, anyone can. She goes to weight watchers for her weekly meeting ( she is on maintenance for life) and tells others about gluten sensitivity and celiac and how wheat could be affecting their health. Go Mom! Her lifelong anxiety, stomach and bowel issues, insomnia and GERD are gone. She sees how it affected her whole life now--as it has mine.


IrishHeart, your mom totally rocks!
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Blood tested 8-11 positive, Biopsy 9-11 negative (long story, most gastro drs. are morons)

gluten-free 7-11, Dairy Free (mostly) 8-13 - Everything but butter.  Can't live life without butter....
 

DS - negative blood test, just diagnosed with ADD and other learning disorders, DNA test positive - high risk

Issues related to gluten: depression, low iron, hair loss, positive ana test for lupus, low vitamin D, headache, sinusitis, environmental allergies, brain fog, GI problems, weight gain....the list goes on....


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#32 IrishHeart

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Posted 07 November 2011 - 01:56 PM

IrishHeart, your mom totally rocks!



Hey Celtic Queen! (I feel like we are kindred souls)

Thanks yes, she is quite the character. :lol:

She is very upset that my family has ignored all the info I sent.
She does not understand why they would not do whatever they could to feel well.

Me neither. :rolleyes:
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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



Misdiagnosed for 25+ years; finally DXed on 11/01/10. I figured it out myself. 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. Posted Image

#33 Celtic Queen

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Posted 15 November 2011 - 09:32 AM

Hey, I could use another kindred soul. Most days I need all the help I can get :D
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Blood tested 8-11 positive, Biopsy 9-11 negative (long story, most gastro drs. are morons)

gluten-free 7-11, Dairy Free (mostly) 8-13 - Everything but butter.  Can't live life without butter....
 

DS - negative blood test, just diagnosed with ADD and other learning disorders, DNA test positive - high risk

Issues related to gluten: depression, low iron, hair loss, positive ana test for lupus, low vitamin D, headache, sinusitis, environmental allergies, brain fog, GI problems, weight gain....the list goes on....


#34 IrishHeart

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Posted 15 November 2011 - 09:53 AM

Hey, I could use another kindred soul. Most days I need all the help I can get :D



Well, you're in the right place!

Last year at this time, I was thinking death would be easier; I was unable to think straight, in searing pain, exhausted and sick as a dog every single day for 3 whole years, yet I knew in my heart I COULD get well if I just figured it out.

Now, one LONG year later....next week, I am cooking Thanksgiving dinner for my family again and grateful that my husband and I never gave up hope.

Hang in there, kiddo :)
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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



Misdiagnosed for 25+ years; finally DXed on 11/01/10. I figured it out myself. 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. Posted Image

#35 MrsVJW

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Posted 29 November 2011 - 08:48 PM

I'm just a wheat-allergy person who is gluten-intolerant, but hoestly? The thing that makes most people realize this might be something in the family health history rather than something in my own mind? "I haven't been this.... er... 'regular' in years." No one wants to bring it up to a discussion that they deal with chronic D, but as soon as there is something like a specific food that it can be pinned on, people start to listen.
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#36 Ellie84

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Posted 30 November 2011 - 02:47 AM

When I got my diagnosis I called all family members personally. I told them that a hereditary disease was found with me and that they should be tested as well because the disease doesn't always manifest itself through GI symptoms. That got their attention. Then I went to explain what celiac disease was and how they might be affected. However, most of them didn't understand the part about the symptoms. They just said: well, I don't have GI problems so I don't have celiac disease <_< An aunt didn't want to get tested because she literally said: "What if the test comes back positive? Then I'm in trouble!". Great strategy, darling... Two female family members had a lot of GI problems and vitamin deficiencies and got a blood test. When it came back negative they didn't want a biopsy. Grrr... I've seen a research paper from Spain lately which is about blood testing in adults, they found out that the test is only conclusive for 33% of adult coeliacs. I've stopped bothering about it then, they know what to test for if their symptoms get worse.
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27, F, from the beautiful area of Twente in the Netherlands. English is not my first language, so I apologize for any errors.

Symptoms started in 2007, but no link to celiac disease was found until 2009. I learned of celiac disease through the internet, my doctor never recognized it. She put me on a diet before tests were done, so the initial tests failed. My GI advised me to do a gluten provocation, which had to be stopped too soon to take a reliable biopsy. Based on symptoms such as vitamin deficiencies, GI problems and osteopenia my diagnosis now is: glutenintolerant, suspected celiac disease. This diagnosis was in march 2010, and I've been so much better ever since.

#37 Di2011

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Posted 30 November 2011 - 03:59 AM

I started to get "celiac is a serious wasting disease in children" lecture last week..
I'll let you guys comment on that one :angry:

((We use "guys" as a non-gender specific term in Australia so anyone is welcome to comment ;) ))
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#38 Di2011

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Posted 30 November 2011 - 05:47 AM

I find this thread makes me so mad and sad. I try my best to keep my sense of humour but it doesn't work much.
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#39 IrishHeart

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Posted 30 November 2011 - 07:09 AM

I started to get "celiac is a serious wasting disease in children" lecture last week..
I'll let you guys comment on that one :angry:

((We use "guys" as a non-gender specific term in Australia so anyone is welcome to comment ;) ))


Using "Guys" for everyone---is the same in the US ;)

Was that comment from a doctor? Because if it came from a non-medical professional, it's understandable. Celiac disease is woefully misunderstood--even in the medical community.

That archaic thinking "children's disease" (or worse, something a child can "outgrow") is what left millions of people world-wide undiagnosed for years. The ripple effect is mind- boggling. How many people died--or are in mental health wards or wheelchairs or battling cancer--because of gluten? Time for these idiots to pick up a medical journal from THIS century once and a while and read what WE ALREADY KNOW. Why did I have to diagnose myself and bring it back to my PC doctor--whose OWN children have celiac--- to hear him say "I did not realize how it manifested in adults"...what Bull---t.

oh, don't get me started on the medical profession. :rolleyes: :lol:
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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



Misdiagnosed for 25+ years; finally DXed on 11/01/10. I figured it out myself. 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. Posted Image

#40 stanleymonkey

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Posted 02 December 2011 - 02:34 PM

some doctors don't get it, the head of the GI clinic at our children's hospital silt the firm belief that if a child is not malnourished, and has no evidence of anything in the bloodwork than absolutely nothing is wrong, but our regular GI and our pediatrician don't care what blood says, they look at the physical evidence. We have been told we can't get an official diagnosis of glutenintolerance as there's of the GI clinic downs't believe it exists.
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#41 mushroom

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Posted 02 December 2011 - 03:26 PM

We have been told we can't get an official diagnosis of glutenintolerance as there's of the GI clinic downs't believe it exists.


But do they believe that the moon is made of blue cheese? :lol:
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

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#42 IrishHeart

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Posted 03 December 2011 - 06:04 AM

some doctors don't get it, the head of the GI clinic at our children's hospital silt the firm belief that if a child is not malnourished, and has no evidence of anything in the bloodwork than absolutely nothing is wrong, but our regular GI and our pediatrician don't care what blood says, they look at the physical evidence. We have been told we can't get an official diagnosis of glutenintolerance as there's of the GI clinic downs't believe it exists.


Here is an article you can print off and bring to the doctor. Would they believe one of the foremost authorities on gluten and Celiac Disease research?

http://somvweb.som.u...mplates/?a=1474
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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



Misdiagnosed for 25+ years; finally DXed on 11/01/10. I figured it out myself. 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. Posted Image

#43 frieze

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Posted 03 December 2011 - 09:14 AM

some doctors don't get it, the head of the GI clinic at our children's hospital silt the firm belief that if a child is not malnourished, and has no evidence of anything in the bloodwork than absolutely nothing is wrong, but our regular GI and our pediatrician don't care what blood says, they look at the physical evidence. We have been told we can't get an official diagnosis of glutenintolerance as there's of the GI clinic downs't believe it exists.

Hmmm in nursing school we were taught to nurse the patient, not the numbers,...
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#44 IrishHeart

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Posted 03 December 2011 - 12:28 PM

Hmmm in nursing school we were taught to nurse the patient, not the numbers,...



This is why nurses are more empathetic and compassionate than most doctors and believe that the patient's level of pain is what he/she says it is. :)

( P.S. I have 4 close friends who are nurses and they are as frustrated with doctors as I am.... :rolleyes: <_< )
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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



Misdiagnosed for 25+ years; finally DXed on 11/01/10. I figured it out myself. 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. Posted Image

#45 Celtic Queen

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Posted 06 December 2011 - 11:14 AM

Hmmm in nursing school we were taught to nurse the patient, not the numbers,...


And that is why I like nurses so much better than doctors. For them it's more about making their patients feel better than the size of their ego or how much money they make.
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Blood tested 8-11 positive, Biopsy 9-11 negative (long story, most gastro drs. are morons)

gluten-free 7-11, Dairy Free (mostly) 8-13 - Everything but butter.  Can't live life without butter....
 

DS - negative blood test, just diagnosed with ADD and other learning disorders, DNA test positive - high risk

Issues related to gluten: depression, low iron, hair loss, positive ana test for lupus, low vitamin D, headache, sinusitis, environmental allergies, brain fog, GI problems, weight gain....the list goes on....



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