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Just A Little Bit Angry

Get and read all lab reports

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18 replies to this topic

#16 ravenwoodglass

 
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Posted 16 November 2012 - 05:35 AM

This may be why your story hit a nerve for me . I am only 18 months into my " official " diagnosis ( even though I have been gluten free for 3 years)
The pain and suffering is still quite fresh in my mind ( and body). I am still too close to the pain and suffering not to be emotional. And the anger, the anger of going 40+ years mis and un dignosised still lingers,,, and some days like today it is quite intense


(((((((((((((((((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))))))))))))))))
I know that pain lingers. The impact on our families and ourselves for all those years can be significant. I live with the what if's every day and it is hard. I try not to think too much of all that I missed as my children were growing up, all the things I couldn't do with them or for them. Somedays are harder than others but I try to think of what is ahead as much as I can. I am one of those annoying people that think everything we go through has a purpose and makes us the person we are today. I may have lost a lot but I gained patience and empathy and I think all those years spent slowly dieing has given me an ability to really enjoy and appretiate each day I have now.
I hope you are able to see the light at the end of the tunnel, forgive those idiot doctors and those that did not understand how sick you really were. For me the hardest part was and is forgiving myself for not being the person I knew was hiding behind all that pain. Since diagnosis I have slowly been able to recover who I really am but it took time. You also will get to be that person that this disease hid for years but it does take time.
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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)

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#17 nvsmom

 
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Posted 16 November 2012 - 08:08 AM

Okay I know we always tell people to get copies of all lab reports from your doctors and read them. I wish I had. I just found one of mine and am so mad I could spit nails, as my Mom used to say. Almost a year before I was finally diagnosed, a year filled with so much pain my DD told me the family would understand if I committed suicide, my then doctor did a celiac panel on me. I had always been told my celiac tests came back negative and they were done repeatedly by different doctors. Well I came across the lab report today during a futile search for my Social Security card. My anti-gliadin IGA was positive. I guess I am not a sero-negative celiac after all. Just one with stupid doctors. The only thing I can figure is since the IGG was negative he didn't think the positive IGA was significant. Or he was so busy writing scripts for me for drugs that did no good at all that he didn't read the report.
Well I won't let this bring me down. I finally found a job and start tomorrow and I am not going to let this find ruin my happy day.


Congrats on the new job! I hope it's going well.

...and (hugs) about that lab. :( Geez. How frustrating for you. No wonder doctors get sued, eh? Humph.

My doctor did that to me with my TSH test over the last 10-15 years. I undertsand your bitterness. Knowing you have lost years to poor health needlessly is incredibly maddening. :angry:
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"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

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#18 a1956chill

 
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Posted 17 November 2012 - 05:25 AM

(((((((((((((((((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))))))))))))))))
I know that pain lingers. The impact on our families and ourselves for all those years can be significant. I live with the what if's every day and it is hard. I try not to think too much of all that I missed as my children were growing up, all the things I couldn't do with them or for them. Somedays are harder than others but I try to think of what is ahead as much as I can. I am one of those annoying people that think everything we go through has a purpose and makes us the person we are today. I may have lost a lot but I gained patience and empathy and I think all those years spent slowly dieing has given me an ability to really enjoy and appretiate each day I have now.
I hope you are able to see the light at the end of the tunnel, forgive those idiot doctors and those that did not understand how sick you really were. For me the hardest part was and is forgiving myself for not being the person I knew was hiding behind all that pain. Since diagnosis I have slowly been able to recover who I really am but it took time. You also will get to be that person that this disease hid for years but it does take time.

Thanks for the (( HUGS)) they are greatly appreciated :)

I am gratefull most days but when I see my 3 children ( 2 are diagnosed the other refuses to be tested) and 4 of my grandchildren ( they are not YET dagnosed) stuggling it breaks my heart . :(
My anger is ( mostly :P ) towards the chemical and food companys that in their GREED decided to put crap ( gluten,soy ,chemicals , GMO) in our food supply.

I join the others that have said , you have inspired and encouraged me with your wisdom,patience and generous heart :wub:
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#19 beachbirdie

 
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Posted 17 November 2012 - 12:17 PM

Mind-boggling. I'm so glad you found the information though, it is awesome to have the validation. It is also affirms strongly why we need to be our own best advocates and NEVER, EVER accept the words "you're perfectly normal" without putting our own eyes on the information.

Good luck on the new job, and congratulations! Hope it is going well for you so far!
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1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012




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