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Did They Have You Test Everyone In The Fam?

macocha

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macocha Contributor
macocha
Posted

when your child was diagnosed with celiac - did they go ahead and test everyone in the family? what were you advised?

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2Boys4Me Enthusiast
2Boys4Me
Posted

I'm in Canada, so things may be different where you are. After my son was diagnosed by both blood test and biopsy, it was recommended that his first degree relatives get tested. The pediatric GI requisitioned the blood tests (they cost us nothing). My husband, other son and I got tested, and my parents were both tested - they had to ask their own doctors for the test. I don't think my in-laws were tested. It was suggested that we get tested every 3 - 5 years or whenever symptoms appear.

Orinda Rookie
Orinda
Posted

Yes, my daughter's doctor recommended that we all get tested. She said that testing her half-brother was optional but we did it anyway. Everyone was negative. 3 out of 4 grandparents are probably going to get tested too!

  • 2 weeks later...
Bex326 Newbie
Bex326
Posted

My daughter's doctor had only me, my husband and son tested. He said if one of us came back positive he would send the grandparents. None of us came back positive, but I wonder if the grandparents should be tested anyway?

luvs2eat Collaborator
luvs2eat
Posted

when I was diagnosed, I told my 3 daughters that they should be tested. I think one had blood work and it was inconclusive. She ended up w/ symptoms a few years later and was formally diagnosed. Youngest daughter started having symptoms last year and was formally diagnosed. Oldest daughter is happily eating gluten and doesn't want to know anything until/unless she starts having symptoms.

My sister, who's had many allergies for her whole life, had to demand blood work from her doctor (in France) and it was negative. My brother hasn't been tested, but has noticed that when he has occasional eczema on his hands... it goes away if he even cuts back on his wheat consumption.

Roda Rising Star
Roda
Posted

After I was diagnosed I had both my boys tested. My oldest one has been tested twice. Both my parents were tested also. All were negative. My mom does not show any signs or symptoms, but my dad I think could benefit from the diet. MY youngest son is doing well too. My oldest son is contimplating trying the diet over summer break. I will then reintroduce him to gluten and see what happens. If nothing weird happens then I'll leave sleeping dogs lay for now. I do have a brother who refuses to get tested and has so many symptoms. He has sarcoidosis, constant rash, lactose intolerance, and other gi symptoms. He has no desire or care to get tested and give up his beloved "bread" and "beer". Just makes me want to smack him. He has three kids too and his oldest boy (16) has struggled with add and behavoir issues which he has really matured since puperty and is doing good now, and the youngest son (14) has really bad behavior problems for the past 4 years. He has taken a lighter and makes smiley faces on his arms. If you ask him why is just looks at you and says "I don't know, it looks neat." All three kids, including his oldest (19 year old daughter) has bouts of bloating and alot of "gas" that their mom just jokingly says can't be normal. I only have one living grandparent and he is 87. I did find out last summer at a family reuinion that a first cousin on my dad's mother's side has a daughter that is celiac. Also my dad's brother's (my uncle) great grandson was diagnosed celiac as a baby last year also. So it definatly is in the family.

MaryannG Rookie
MaryannG
Posted

After I was diagnosed I had both my boys tested. My oldest one has been tested twice. Both my parents were tested also. All were negative. My mom does not show any signs or symptoms, but my dad I think could benefit from the diet. MY youngest son is doing well too. My oldest son is contimplating trying the diet over summer break. I will then reintroduce him to gluten and see what happens. If nothing weird happens then I'll leave sleeping dogs lay for now. I do have a brother who refuses to get tested and has so many symptoms. He has sarcoidosis, constant rash, lactose intolerance, and other gi symptoms. He has no desire or care to get tested and give up his beloved "bread" and "beer". Just makes me want to smack him. He has three kids too and his oldest boy (16) has struggled with add and behavoir issues which he has really matured since puperty and is doing good now, and the youngest son (14) has really bad behavior problems for the past 4 years. He has taken a lighter and makes smiley faces on his arms. If you ask him why is just looks at you and says "I don't know, it looks neat." All three kids, including his oldest (19 year old daughter) has bouts of bloating and alot of "gas" that their mom just jokingly says can't be normal. I only have one living grandparent and he is 87. I did find out last summer at a family reuinion that a first cousin on my dad's mother's side has a daughter that is celiac. Also my dad's brother's (my uncle) great grandson was diagnosed celiac as a baby last year also. So it definatly is in the family.

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MaryannG Rookie
MaryannG
Posted

I totally understand the frustration of people not wanting to get tested. My daughter has celiac and my husband and I got tested, which both came back negative. The GI dr says to get tested every 3-5 yrs. My other daugthers will also get tested every few years as well. We don't know which side of the family carries it, but my husband I each each have a gene for celiac but different ones. I have been telling my Mother in law that my nephew should get tested because I don't feel comfortable tell my sister in law. She thinks I'm crazy. My nephew is 7 and is 40 lbs!!! He is super short as well. She says that his dad was small as a kid but shot up later. Come on, its in the family. he should definitely get tested but I don't know how to get anyone to listen to me. He is at so many risks for things if he has it and doesn't know it. It is so frustrating. I could be wrong but I wish he would just get the test. The younger he is the better in my opinion to find out. Now his cousin on the other side of the family was just diagnosed with celiac. It was a random finding, he was just getting sick all the time and the dr gave him this test along with others and it came back positive. I wish I could figure out a way to talk to my sister in law about it but I also know his dad would say no way. UGH!

celiacmom2 Rookie
celiacmom2
Posted

After I was diagnosed I had both my boys tested. My oldest one has been tested twice. Both my parents were tested also. All were negative.

Roda~

How did you get the doctors to test your kids? Mine don't have typical symptoms so the pediatrician told me my insurance won't pay for it. And the only way is if they are having medical problems...I am so frustrated about it, I didn't have any symptoms(that I knew of) until I ended up in the hospital with a blood clot in my lung, and thats when they found out my iron was extremely low, vitamin D was almost non existant...I have tested positive for the biopsy, then the antibodies, and was diagnosed a month ago. Celiac disease runs in the family...my grandmother has it and some of my cousins think they have it so they will be getting tested soon.

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