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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Pre-Endo Freak Out
#1
Posted 07 August 2012 - 04:40 PM
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.
#2
Posted 08 August 2012 - 03:17 AM
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.
"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
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!
#4
Posted 08 August 2012 - 05:09 PM
#5
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.
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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