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Brother Diagnosed, What Tests Should I Get?


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#1 AutumnSong

 
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Posted 02 April 2010 - 05:19 PM

My brother was diagnosed with celiac in January during his routine yearly physical, after some blood counts came back low. He wasn't aware there was anything wrong. I've read that celiac sometimes manifests after a high-stress trigger, which for him was probably the sudden death of our mother in September. He already has osteoporosis and some other things from the celiac. His doctor suggested that my sister and I be tested as well since it is genetic. Since my brother and I are not close he wasn't helpful in giving me much information. I have done a ton of reading the past few months and am still not sure exactly what blood tests I should ask for, other than the genetic marker test. There seem to be so many conflicting opinions and it is all very confusing. Should I just do the marker test first and if it's negative I know I can't have celiac? Should I have the other tests done at the same time or only if I have the markers? Exactly what other things should be tested for and is there really any point, since it sounds like there is such a high rate of false negatives? I don't want to have the invasive biopsy done if at all possible as I have a very low pain thresh-hold and don't respond well to a lot of medications -- am concerned about what effects the sedative might have on me. Today on this website I read about people getting stool testing done, but there seems to be controversy over the accuracy of the tests. Does the biopsy have to be done? I would like to know if any of the digestive problems I've had most of my life, as well as other symptoms the past several years, might be from celiac and it was just never diagnosed. I also want to know if I have celiac because if I do I donít want to end up with osteoporosis or any of the other problems my brother has. I would ask my naturopaths about it but he died two years ago and his wife moved her practice to the west coast last spring because she missed him too much here. I haven't found a new naturopath yet because I don't have any medical insurance and all of the ones in my area charge so much more than my other doctors did. Am wondering if I should pursue testing through a naturopath or through some other kind of doctor. Have read in many places that a lot of doctors don't know much, if anything, about celiac and I don't want to waste my time or money (money I donít have.) I appreciate any advice .
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#2 mushroom

 
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Posted 02 April 2010 - 06:00 PM

My brother was diagnosed with celiac in January during his routine yearly physical, after some blood counts came back low. He wasn't aware there was anything wrong. I've read that celiac sometimes manifests after a high-stress trigger, which for him was probably the sudden death of our mother in September. He already has osteoporosis and some other things from the celiac. His doctor suggested that my sister and I be tested as well since it is genetic. Since my brother and I are not close he wasn't helpful in giving me much information. I have done a ton of reading the past few months and am still not sure exactly what blood tests I should ask for, other than the genetic marker test. There seem to be so many conflicting opinions and it is all very confusing. Should I just do the marker test first and if it's negative I know I can't have celiac? Should I have the other tests done at the same time or only if I have the markers? Exactly what other things should be tested for and is there really any point, since it sounds like there is such a high rate of false negatives? I don't want to have the invasive biopsy done if at all possible as I have a very low pain thresh-hold and don't respond well to a lot of medications -- am concerned about what effects the sedative might have on me. Today on this website I read about people getting stool testing done, but there seems to be controversy over the accuracy of the tests. Does the biopsy have to be done? I would like to know if any of the digestive problems I've had most of my life, as well as other symptoms the past several years, might be from celiac and it was just never diagnosed. I also want to know if I have celiac because if I do I donít want to end up with osteoporosis or any of the other problems my brother has. I would ask my naturopaths about it but he died two years ago and his wife moved her practice to the west coast last spring because she missed him too much here. I haven't found a new naturopath yet because I don't have any medical insurance and all of the ones in my area charge so much more than my other doctors did. Am wondering if I should pursue testing through a naturopath or through some other kind of doctor. Have read in many places that a lot of doctors don't know much, if anything, about celiac and I don't want to waste my time or money (money I donít have.) I appreciate any advice .

Hi and welcome to the forum, AutumnSong.

Yes, it is correct that if you have a first degree relative with celiac you should be tested too. The test is a blood test called the celiac panel which is ordered by your MD and consists of
Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Total Serum IgA

You can if you wish also request the genetic testing to see if you carry any of the genes associated with celiac/gluten sensitivity, but even if you have one of the genes it does not mean you have the disease, just the genetic marker for it. And other genes are now being implicated in celiac disease.

You should make sure that the doctor orders all of the tests, particularly the last, as if you are not producing IGA it will invalidate the other tests. Most doctors recommend that you have the biopsy if your result is positive, but you can choose not to. It is considered to be the "gold standard" of diagnosis, but many doctors will diagnose based on a positive blood test and positive response to a gluten free diet. Do not stop eating gluten until you have had all testing done. Yes, it is possible to get a false negative on the test; that is why it is recommended that even if the test is negative you should give the gluten free diet a trial and see if it works for you. And if the test is positive, then you should have your blood levels of B12, Vit. D, folate, calcium, iron/ferritin at the minimum, tested. It is also good to test thyroid function, TSH, free T3 and free T4. I know this is a lot of testing if you don't have any insurance.

And yes, it is also true that many doctors are sadly out of date when it comes to celiac disease, even gastroenterologists. Your local celiac society might be able to provide you with the name of a celiac literate doctor in your area, or you could look or post in the Doctors section of the forum for one in your area.

I hope things work out well for you. Let us know how you get on and ask any other questions you may have.
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#3 AutumnSong

 
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Posted 02 April 2010 - 06:38 PM

Hi and welcome to the forum, AutumnSong.

Yes, it is correct that if you have a first degree relative with celiac you should be tested too. The test is a blood test called the celiac panel which is ordered by your MD and consists of
Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Total Serum IgA

You can if you wish also request the genetic testing to see if you carry any of the genes associated with celiac/gluten sensitivity, but even if you have one of the genes it does not mean you have the disease, just the genetic marker for it. And other genes are now being implicated in celiac disease.

You should make sure that the doctor orders all of the tests, particularly the last, as if you are not producing IGA it will invalidate the other tests. Most doctors recommend that you have the biopsy if your result is positive, but you can choose not to. It is considered to be the "gold standard" of diagnosis, but many doctors will diagnose based on a positive blood test and positive response to a gluten free diet. Do not stop eating gluten until you have had all testing done. Yes, it is possible to get a false negative on the test; that is why it is recommended that even if the test is negative you should give the gluten free diet a trial and see if it works for you. And if the test is positive, then you should have your blood levels of B12, Vit. D, folate, calcium, iron/ferritin at the minimum, tested. It is also good to test thyroid function, TSH, free T3 and free T4. I know this is a lot of testing if you don't have any insurance.

And yes, it is also true that many doctors are sadly out of date when it comes to celiac disease, even gastroenterologists. Your local celiac society might be able to provide you with the name of a celiac literate doctor in your area, or you could look or post in the Doctors section of the forum for one in your area.

I hope things work out well for you. Let us know how you get on and ask any other questions you may have.



Thank you for the information. I will look for a doctor.
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