Stepha
Apr 16 2004, 04:46 PM
I live in Colorado and have been diagnosed and on a diet for a year now.
I was wondering a couple of things:
Is it important that my family be tested for Celiac?
How do I know if my doctor is good for this disease?
Should I have a doctor that specializes in Celiac?
If anyone can answer these let me know.
celiacfreeman
Apr 22 2004, 04:47 AM
do you need a special doctor?
NOt if he follows the guidline somewhere on this site for
your follow up after going gluten free and you need to have him order you
a bone density test. Mine didn't know but he goes along with what I get of this site.
I'm trying to get my daughter checked, i've heard anywhere from
5-70 percent that they'll test positive.
gillian502
Apr 22 2004, 12:01 PM
Yes, your family should be tested for celiac disease. Your parents, siblings, and children at least should be. Your doctor should of course be a gastroenterologist, and if you can find one who lists one of their areas of expertise as celiac disease then all the better. Or, you could go to a general GI doc and just check in with a celiac disease specialist every few months to make sure all the bases are being covered. Many doctors don't even know what blood tests are appropriate for celiac disease, so make sure your doctor is experienced enough in this to know.
ChristyClarke
Aug 8 2005, 01:00 PM
Hi, I'm Christy,
This is my first day on the site and I keep messing up the replies.
I'm 36 and live in Boulder and am waiting for my blood results but my gut litterally tells me that it is Celiac. I'm also auto-immune thyroid and have so many health problems that all seem to lead back to Celiac, that I feel like this is my only chance and I hope that I am not unresponsive to the gluten-free diet that I can't start until I get a proper diagnosis.
I noticed that your posting was rather old and I'm wondering if you ever found a GI person who was good, because I'm going to need a biopsy and then testing for my 4 and 6 year olds, and if I can convince my Irish mother who most definitely passed it to me, one for her too in the San Francisco area and one for my sister who does humanitarian aid in Romania but is married to a German and gets her and her 2 year olds health care done there.
Thanks for any leads.
Christy
kabowman
Aug 8 2005, 01:09 PM
My kids pediatrition automatically did the blood test on my boys--based ONLY on my elimimination diet findings, negative. My mother and sister have identical symptoms and problems I had before I went gluten-free but refuse to try the diet or be tested, despite the fact that maternal grandmother was most likely celiac (same symptoms) and my maternal aunt is definitly celiac - tested positive.
Some people don't want to know.
aorona
Aug 14 2005, 10:24 AM
I would suggest you do find a specialist in celiac disease. You can then be put on the right dosage of vitamins to get you back to normal. Since this is a hereditary disease your entire immediately family should be tested. You and your family should also be tested for any food allergies, this way you will eliminate any possibilities of reactions. Also, some people that have had active celiac disease for a very long time, it may take one to two years for your body to completely heal, and in some cases, irreversable damage may have occurred.
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