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wozzy

Getting Relatives Tested

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Emily - I understand.... the ONLY sibling of mine to get tested, and I expect the only one ever to, is that same bro - after I told him that his reflux, etc could be from celiac - He came out negative, like your dad...but I also told him before he did the blood tests with his doc, that he would need to do the genetic test to rule out celiac, long-term...otherwise he could still 'get' Celiac Disease.

I doubt he will ever do the 'retesting every five years' that is currently recommended for first degree relatives of celiacs who do not know if they carry one of the genes for it, and which I made sure to tell him and all my sibs about.

They just don't want to hear about any of it, anymore...

That's the way my family works...

An example: I was the only one in my family to not deny my father's alcoholism, and abusive behaviors (like trying to choke me once when drunk, my older sister another time, pushing my little sister onto her bed and calling her a 'slut,' etc.). Some 'lovely' memories: To help my older sis, I had to threaten to burn my father with an iron once...To help my 11 years younger sis, I called a child abuse hot line when I was 24 when she called me and asked me to come home to help her (the hot line people forced my parents and her into counseling, or they would give me guardianship), and I did 'an intervention' by myself when I was 28 to get him to stop drinking .

He would not be alive today if he hadn't stopped drinking... BUT, because I was 'the only one' to not deny our family's 'crap,' I am also 'the scapegoat'...people in denial just do not want to pay attention to those that aren't. I don't really take it personally anymore...it's weird to think of myself as the strong one among 6 'kids'...especially after all of the weak physical feelngs that came with 2 decades of undiagnosed Celiac Disease.

Anyway - I know it's hard to see one's father not 'concerned enough' about his health...he's lucky to have you for a daughter.

Hope it's OK to say: please keep focusing on yourself - ...all you can do is share the info you have, tell your dad "I Love You and want you to be healthy," and then be a good role model. Love to you -

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Wow, Faithinsciencetoo...have you ever had a load to bear. You say my dad's lucky to have me, mygawd, your siblings (and also your father) have been so lucky to have YOU! What a hero you are, dealing with all your dysfunctional-family issues as you have, and when sick with untreated celiac! Hugs and kudos to you. You are absolutely right...we must feel good about what we've been able to accomplish with our denying families, and get on with caring for ourselves... :)

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Hi, I am new to this forum. I have read here and there and wanted to write a few different times but never seem to have the time. I have been sick off and on for over the past 8 years. I never heard of Celiac until January 2006. I was in the ER due to severe stomache burning and aches. Was diagnosised with Peptic Ulcer. I called my doctor and told him this wasn't the problem and to do more tests. I saw the gastroentrologist and he started a series of tests which resulted in my gall bladder not functioning and surgery for it to come out ASAP. During all of those tests, blood and otherwise, I was told about the celieac and the Dr. said to change my diet. I was in shock, cried cause I wasn't sure what it was or what I was going to do. I read a lot of stuff on the internet and just day to day, I never heard of any of this before and now it seems like I am running into more and more people at the store who have this in common. I had the dark circles under my eyes and the feeling of being dragged through the mud and so forth. It took probably 4 to 6 weeks before I felt better and the dark circles went away. I still feel tired, and now have been diagnosed with chronic fatigue syndrome. Nothing can be done about that. I have 4 boys and a grand daughter. My second son was tested due to always having stomache problems, he is negative. The pediatrican said unless my younger two boys had symptoms, he was not going to test them until they are older. My oldest son, who I was more concerned about is also a juvenile diabetic. I asked him to have the doctor test him, (mom can't call the doctor anymore cause he is over 18), and his doctor wouldn't do the test. My son, 5 days after I had surgery for removal of my gall bladder, ended up in diabetic coma with a sugar level through the roof - 1661. He almost died. While he was in ICU, I asked due to them taking blood every hour to take extra and test it for celiac. The Dr. wouldn't do it cause it had to come from my son who is over 18 and was in a coma- hello, who then is suppose to make those kinds of decisions, because he did not have a proxy at that time. I was furiated. When he was finally released from the hospital, and went to the liver specialist, I asked him for my son's health, and it was the same office different doctor who diagnosed me, if he would do this test. He agreed, finally. I didn't want him to have this disease, but needed to know due to what he can or can not have as a diabetic. I have read it takes 7 to 10 days to get blood results, less than a week later, his regular doctor called me to say my son had celiac and wanted to know which doctor had set up for this test. When I told him, he did say that it was a good idea cause his level was high for celiac. Now we have both gone to his Dr. appts. and saw a nutritionist and know what foods he can have, and which to avoid. We have since learned a lot and am very thankful. Thank you for listening.

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