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Probable Celiac - Need Help With Questions For Gi Guy On Fri.

GFPamela

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GFPamela Newbie
GFPamela
Posted

Went gluten free 2 yrs ago without a diagnosis. Now I'm not willing to do a gluten challenge as symptoms are too severe (IBS, severe gas, etc). My sister was diagnosed in infancy. But the doctors then thought she'd outgrow it and so she suffered a lot of damage until she went back on a gluten free diet as a young adult. I see a GI guy in a few days. I'm wondering what questions to ask and what to expect. Really would like genetic testing since my most of my other 6 siblings are having problems but are in denial and few believe I could also have celiac disease. What are you all seeing out there? Do doctors sometimes agree to genetic testing in a case like mine? Paying out of pocket is not an option. Thanks for any help you can give.

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Roda Rising Star
Roda
Posted
Do doctors sometimes agree to genetic testing in a case like mine? Paying out of pocket is not an option. Thanks for any help you can give.

I'm sure the doctor could order the genetic testing, but you may want to contact your insurance carrier before hand, since some do not cover genetic testing. I would like to have the genetic testing done just to see what genes I do have, but my insurance won't pay for it. I don't want to foot the whole bill since I am already diagnosed by blood work and biopsy just for curiosity sake. I do think if I knew what genes I had I could potentially use it to help my brother and father to get tested( They both refuse and have symptoms). I have not had my two boys genetic tested either for the same reason. I have had them both screened, although it was not a complete pannel. One of mine I am a little suspicious and probably will undergo more blood work on him soon. I hope you get the answers you need.

ravenwoodglass Mentor
ravenwoodglass
Posted

This is a tough one, not trying to answer it but what I think he is going to say. I would expect he is going to want you to go back on gluten for testing. Whether your insurance company will want to pay for genetic testing is a good question. Insurance companies can be real tough to deal with. They may want to see a blood test and biopsy done first. It is possible that he will diagnose based on family history and the resolution of your problems once you went on the diet. It would be helpful if you can bring in copies of your medical history from before and after you started the diet.

I don't know what your copays are but in the long run it may amount to more than getting gene testing done on your own. Enterolab would be one place to check for independant genetic testing and they test for more than just the 2 genes that most doctors test for. Gene testing can't diagnose you, it can tell you what genes you have and is sometimes a valuable component in the diagnostic process but a lot of folks carry the genes without developing celiac.

Doctors do advise testing of all first degree relatives once one person in a family is diagnosed. That said you can not force them to test. You can find that info on the net on sites like the NIH's celiac awareness campaign and many other medical sites. Perhaps if you print out some info from that type of site your other family members might listen and get tested.

GFPamela Newbie
GFPamela
Posted
  • Author
This is a tough one, not trying to answer it but what I think he is going to say. I would expect he is going to want you to go back on gluten for testing. Whether your insurance company will want to pay for genetic testing is a good question. Insurance companies can be real tough to deal with. They may want to see a blood test and biopsy done first. It is possible that he will diagnose based on family history and the resolution of your problems once you went on the diet. It would be helpful if you can bring in copies of your medical history from before and after you started the diet.

I don't know what your copays are but in the long run it may amount to more than getting gene testing done on your own. Enterolab would be one place to check for independant genetic testing and they test for more than just the 2 genes that most doctors test for. Gene testing can't diagnose you, it can tell you what genes you have and is sometimes a valuable component in the diagnostic process but a lot of folks carry the genes without developing celiac.

Doctors do advise testing of all first degree relatives once one person in a family is diagnosed. That said you can not force them to test. You can find that info on the net on sites like the NIH's celiac awareness campaign and many other medical sites. Perhaps if you print out some info from that type of site your other family members might listen and get tested.

Yes, thanks. I'll see what he has to say tomorrow. My gene testing would be more helpful to my family than me because I'm already convinced. I'll have to keep working on them. I wish doctors would test right away rather than tell people (like me) to try a gluten-free diet and see if problems are resolved.

GFPamela Newbie
GFPamela
Posted
  • Author

I'm sure the doctor could order the genetic testing, but you may want to contact your insurance carrier before hand, since some do not cover genetic testing.

Thanks for the info. I'll call them today. I don't want to go in to the appointment blind.

BettyinMD Newbie
BettyinMD
Posted

Thats interesting that your sister was diagnosed as an infant! Same thing happened to me, and my mom was told I would 'grow out of it.'

Good luck tomorrow!

GFPamela Newbie
GFPamela
Posted
  • Author
Thats interesting that your sister was diagnosed as an infant! Same thing happened to me, and my mom was told I would 'grow out of it.'

Good luck tomorrow!

Yes, she ended up with ulcerative colitis, stunted growth, is sterile and now osterporosis and diabetes! But she deals with it all very well. Now I have to learn from her; she's very strict with her diet and I have to watch better for that hidden gluten.

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