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Pre-Endo Freak Out


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#1 mbadger2

 
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Posted 07 August 2012 - 04:40 PM

I am going in for an endoscopy first thing tomorrow and my nerves have grown arms...lots of them. I am nervous about the procedure but I am sure it will be fine. The nurse called today and said I would be "absolutely comfortable." I am afraid that the blood test will be confirmed but I am equally scared that it won't. I am scared that they will find something that we aren't even looking for (maybe the watermelon tree mom always said would grow if I ate the seeds?). Anyway, maybe I should have let the positive blood test be enough (tTG IgA was 133 with >19 positive). My thinking is that I should know if there is damage and my hope is that, if I get a confirmed diagnosis, my kids can be screened and diagnosed by blood, saving them from the endoscopy.

On a side note, I am walking around my kitchen eating some of all the food I love (literally ALL of it) that I may not be able to have again. I am so totally uncomfortable and my stomach feels like it has pop rocks in it. Necessary? No. Justified? I think so. :)
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#2 ravenwoodglass

 
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Posted 08 August 2012 - 03:17 AM

The worst part of the procedure for me was waiting for it to be done. I think you may have the same feeling when it is over. The test itself is something you won't even remember. You will simply 'take a nap' and wake up and go home and start your gluten free life. With positive blood tests you know you need the diet no matter what the biopsy results are as the tests can have false negatives but not false positives.
Try not to worry and hopefully you will recover soon but things can be up and down at first on the diet. Ask any questions you need to ask.
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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 mbadger2

 
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Posted 08 August 2012 - 03:57 PM

The worst part of the procedure for me was waiting for it to be done. I think you may have the same feeling when it is over. The test itself is something you won't even remember. You will simply 'take a nap' and wake up and go home and start your gluten free life. With positive blood tests you know you need the diet no matter what the biopsy results are as the tests can have false negatives but not false positives.
Try not to worry and hopefully you will recover soon but things can be up and down at first on the diet. Ask any questions you need to ask.



The endoscopy was a total breeze. I was OUT like a light and don't remember a thing. The doctor said that he did not see any obvious damage but will know more once the samples are looked at. He did says that, based on my blood work, he feels stronly that this is celiac and I should remove gluten. This doctor was great. He said his dad has celiac and this makes me think that he is more aware than others (like every other doctor I have ever had). I feel lucky to have found him and my PCP. For my entire adult life my doctors have told me that I am stressed and depressed and need to be medicated. Every symptom I have was blamed on depression. I started saying no to medication years ago because it never really helped. I finally found a doctor that listens and here we are. There are good ones out there, you just have to keep looking!
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#4 Angel M

 
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Posted 08 August 2012 - 05:09 PM

So glad your EGD went well. I cried like a baby when they took me back. It really wasn't bad at all, but I was terrified since I've never had any kind of procedure done. My doctor diagnosed me based on a blood test as well. The only damage found in me was inflammation. The doctors don't always find damage with a biopsy. You'll likely feel a lot better once you start gluten free. It can be very difficult at times, but I also find it to be quite fun when I try new recipes that taste fantastic or when I find something new at the grocery store!
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#5 beachbirdie

 
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Posted 08 August 2012 - 05:51 PM

The endoscopy was a total breeze.



So glad everything went smoothly. Sounds like you have an amazing doctor as well. I think people get really good care from docs that have a personal stake in a condition! How rare to find one with celiac in his family. :)
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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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