Confused - daughter diagnosed with celiac but me and husband tested negative for gene

Andrea - posted on 09/04/2011 ( 2 moms have responded )

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My 20 yr old daughter was diagnosed with celiac through endoscopy and blood work. Me, my husband and two sons tested negative for celiac through blood work, yet only my youngest son tested positive for the celiac gene. GI told me that either me or my husband carry the gene and to get all family tested for celiac. I not only had us all tested for celiac, but had a genetic test done also as I have read about asymptomatic celiac. Still trying to get answers as GI could not explain how me and my husband are negative for the gene. He is not concerned about my son and doesn't want to see him unless he has symptoms. Can anyone help or refer me to someone that can help interpret our test results. Also need to find a GI knowledgeable with celiac in my area. I live in Union County, NJ. Any help would be appreciated.

Thanks

Andrea

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Jenna - posted on 12/08/2011

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coeliac disease has a tendancy to skip a generation! so you may find that you or your husbnads parents had it and didnt know! and each child you then have has a 1 in 10 chance of been a coeliac! I am a coeliac as well as my eldest daugher! none of my parents or my any of my 3 siblings have it! but my cousin does! we think that maybe my mums dad has it as he has always been really skinny! but we are no longer in contact so will never find out! we are in the process of having our youngest daughter tested but we dont think she has it as at 9 months old she is a lot different to how our eldest was at this age and she went on to be diagnosed at 11 months! Plus coeliac disease is more common in females than males!

Kate - posted on 09/16/2011

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You can carry the gene and never have symptoms of the disease. What usually happens is that the body is put under a great deal of stress (each person is different as far as what it considers a great deal of stress) and that is when the Celiac disease starts. It was best explained to me by saying it is like cancer. We all carry the make up for cancer in our bodies but one day for some unknown reason a switch is flipped inside the cell and we develop the illness. Just because we all carry the make up for cancer does not mean that we will have cancer. I hope that helps you understand a little better.

There are also other things such as gluten sensitivity that your family members may have and that will not show up in gene testing, blood testing, or in the stomach.

The most important thing is that if you are not getting the answers you need from the doctor you have seek a 2nd opinion from another doctor most insurance companies allow this they just don't advertise it. You can also try asking fir a office visit to talk to your current doctor. write all the questions you have down and don't leave until you have them answered. I have even dropped them off at the doctors office with my email address and let the doctor email me all the answers. It all depends on the doctor you have and how he prefers to work.

I have a 4year old with a form of Celiac disease or gluten allergy (they are not sure after a 1 1/2 years) so I know how frustrating it can be to go through all this. Her original ped's doctor told me, " You can google as well as I can." I promise you are not alone in this. All of the other moms have battle stories too. It will get easier feel free to contact any of us if you need help.

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