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Family Members Should Be Tested

Rikki Tikki

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Rikki Tikki Explorer
Rikki Tikki
Posted

I just had an interesting thing happen. My mom had been sick for several months, weight loss, no energy etc. While I was at the doctor with her I asked that she be tested for celiac. The doctor said he didn't have much faith in the blood test etc. I asked that he test it anyway, as you can guess her numbers were off the chart as positive for celiac.

I had always thought I got it from my dad because he seemed to have many stomach problems. He died several years ago and so there was no way to have him tested.

I was so worried that she had cancer it came as quite a relief to me. She didn't take it quite so well, she shook her fist at me! I laughed and gently reminded her that celiac was genetic so I got it from her and then she said I was the one that asked him to check her for it!

It appears she is going to be fine and I am so relieved.

Thought I should post this in case it would help anyone else.

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Carriefaith Enthusiast
Carriefaith
Posted

I am also just starting to realize how important it is to get all family members tested. Since I've been diagnosed my grandmother found out she had celiac, just from being screened because I have it, she has had symptoms but the doctors have never thought to test her. My brother is highly suspected to have it as well since he is quite sick right now, he was just tested yesterday. And my aunt (grandmother's daughter) probably has it as well, since she has had problems her whole life and has been told that she has a wheat allergy, we are going to encourage her to get tested as well.

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skoki-mom Explorer
skoki-mom
Posted

This is how I was diagnosed. My sister was symptomatic and got tested. I got tested because I'm her sister and found out I have it too. I never would have been tested otherwise because I don't have any symptoms. I just go to show that even family members who do not have ANY symptoms should be screened. I don't think it's necessary to rush out and do it, I just asked for the test at my annual physical.

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bluelotus Contributor
bluelotus
Posted

I have plenty of family memebers that should be tested, but don't consider themselves as candidates or are in denial b/c they fear the change in their eating habits. It really gets to me at times, but I guess that is what family members are supposed to do - get to you

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Guest DanceswithWolves
Guest DanceswithWolves
Posted
I have plenty of family memebers that should be tested, but don't consider themselves as candidates or are in denial b/c they fear the change in their eating habits.  It really gets to me at times, but I guess that is what family members are supposed to do - get to you

<{POST_SNAPBACK}>

I asked my mother to get tested and she said she would ask her doctor at her next appointment in October. She said if it will "ease my mind" she would do it. :)

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Wandering Hermit Contributor
Wandering Hermit
Posted

My kids had a checkup at the same clinic whgere I was dxd. We asked their doc about having them tested. He said, no. Not necessary.

Doctors. :angry:

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Rachel--24 Collaborator
Rachel--24
Posted
My kids had a checkup at the same clinic whgere I was dxd. We asked their doc about having them tested. He said, no. Not necessary.

<{POST_SNAPBACK}>

Why would they refuse to test the kids if you were dx'd there? I thought that they would automatically agree that any family member should be tested?????? <_<

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Merika Contributor
Merika
Posted

Wandering,

Your doc is wrong. Your kids should be tested, assuming they are over age 2 or 3 (no point if asymptomatic under this age, as false negatives are common). EVERY first degree relative should be tested. Next time you're there, *insist* he test them. :)

Merika

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Guest DanceswithWolves
Guest DanceswithWolves
Posted
Wandering,

Your doc is wrong. Your kids should be tested, assuming they are over age 2 or 3 (no point if asymptomatic under this age, as false negatives are common). EVERY first degree relative should be tested. Next time you're there, *insist* he test them. :)

Merika

<{POST_SNAPBACK}>

I don't understand what's with these doctors?

Is it the fact that they all want us to stay sick? They diagnose us all as having IBS and then throw some pills at us.

I can't wait to hear what excuses they come up with I go back on Tuesday for my results. :angry:

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Wandering Hermit Contributor
Wandering Hermit
Posted

The kids' doctor said - "they don't show any symptoms, they don't need to be tested."

Idiot. We're gonna change doctors.

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Rikki Tikki Explorer
Rikki Tikki
  • Author
Posted

I know what you all mean about doctor's! I had asked my brother to be tested, he went to the doctor who told him, "why would you want to go on that awful diet if your not having any symptoms?" My thought was that it may save him years of damage to his body. But, what do I know, I am just a social worker! :angry:

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bluelotus Contributor
bluelotus
Posted

I hate doctors.......enough said. All a bunch of idiots. I come from a biological science background and understand how difficult it is - too many variables. Forget the "It isn't rocket science" saying and replace that with biological science. People are not the same - everyone's body is different as well as their environment. For doctors to make gross generalizations and assumptions is generic, bad science, and bad medicine. They can't get over their egos or think outside the box long enough to realize this. I understand that generalizations aid in memory, etc., but OMG!! Enough studpidity already, docs!!!

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skoki-mom Explorer
skoki-mom
Posted

I guess I have been really lucky because my GP has been great about this since the start. She didn't think I had celiac disease when I asked for the first test (neither did I), but agreed it was probably a reasonable request given my sis has celiac disease. When it came back +, she told me straight up that she didn't really know what to advise someone like me because she had never before had anyone come back with + positive test results but not have any symptoms. So, she consulted a GI, and I know she has spoken with him about me on at least 3 occasions and has been great about getting back to me with information and stuff. She agreed the kids should be tested and not only did we do an anti-endomysial, she suggested we do the transglutimase as well since dual results would be more conclusive and it would avoid having to poke the kids twice. My GI has been great as well, and told me he would consult me to a pediatric GI if my kids came back +. Luckily, my girls tested negative on both screens so I don't have to worry about that. At any rate, I feel really lucky that I have been given great care to this point and treated respectfully by the doctors I'm working with.

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Rikki Tikki Explorer
Rikki Tikki
  • Author
Posted

Well said bobcat girl! I like your spunk.....

Lori, I am glad you have had good luck, too many of us have had rotton luck regarding this it's nice to hear positive stories!

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Dittenheim Newbie
Dittenheim
Posted

Regarding diagnosis of Celiac:

I run the education programs for a major genealogical society. Just coincidentally I had a program at the society on Saturday featuring Thomas Shawker, an MD who discussed DNA & genealogy, including genetic testing and the benefits of tracing your family's health history.

One of the hereditary diseases he discussed was celiac. I asked him lots of questions. Apparently it is a recessive disease - you need to get the genetic defect from BOTH parents in order to develop it. Because full siblings get their genetic make-up from the same two parents if both parents are carriers they have a fifty-fifty chance of having celiac. Even those who don't actually develop the disease are probably carriers. The children of carriers will only get it if the other parent is also a carrier. However, because they get half their genes from the carrier - they also may be carriers.

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Rikki Tikki Explorer
Rikki Tikki
  • Author
Posted

That's really useful information, thank-you!

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Merika Contributor
Merika
Posted
One of the hereditary diseases he discussed was celiac. I asked him lots of questions. Apparently it is a recessive disease - you need to get the genetic defect from BOTH parents in order to develop it. Because full siblings get their genetic make-up from the same two parents if both parents are carriers they have a fifty-fifty chance of having celiac. Even those who don't actually develop the disease are probably carriers. The children of carriers will only get it if the other parent is also a carrier. However, because they get half their genes from the carrier - they also may be carriers.

<{POST_SNAPBACK}>

Dittenheim,

Can you post a link to this? I have *never* heard this. Interersting, but I'd like to see some data on this....

Merika

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Dittenheim Newbie
Dittenheim
Posted

Dittenheim,

Can you post a link to this? I have *never* heard this. Interersting, but I'd like to see some data on this....

Merika

I don't have a link to this. I got the information during Q&A after the lecture.

Dr. Shawker works for the National Institutes of Health in Bethsheda, MD and they are currently doing a study on Celiac. You may want to take a look at their website: Open Original Shared Link

I found another site Open Original Shared Link

which discusses the familial odds of developing Celiac, but doesn't specifically mention recessive or dominant tendencies.

I'm going to see if I can get Dr. Shawker to write something for our forum.

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Dittenheim Newbie
Dittenheim
Posted

Dittenheim,

Can you post a link to this? I have *never* heard this. Interersting, but I'd like to see some data on this....

Here's something which discusses the recessive tendency of Celiac: Open Original Shared Link

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