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Member Since 20 Nov 2012
Offline Last Active Mar 12 2014 11:28 AM

Topics I've Started

Vitamin Malabsorbtion, Joint Pain, Fatigue And Rash

21 January 2014 - 08:05 AM

I was diagnosed with celiac in December 2012 and have been very strict about my diet.  I had my one year follow-up in December.  The good news is that my Deamidated Gliadin is now within normal levels.  I was told this means I'm doing very well with my diet. 


My dr. took me off the massive vitamin supplements in August hoping I would absorb them normally.  The bad news is that my vitamin D is back down to a 9 and my zinc is at a .5.  


I've been referred to an endocrinologist but I can't get an appointment until the end of March. My doctor won't put me back on the vitamin Rx until I see the endocrinologinst.  My other symptoms are joint pain in hands, wrists and elbows, major fatigue, weight gain and from time to time, a bright red rash on my face and neck. 


I want to be proactive when I finally get in to see the endocrinologist.  Since many of you have had disorders related to celiac, can you advise me what tests should be done?  Medical costs and deductibles being what they are, I would rather have one lab visit with all the needed tests rather than repeated visits with exorbitant charges.  I also have a photo of me from this weekend when I had a bout of the bright red rash.  Should I email this to the endocrinologist in advance of my appointment? 


On another note, my gastro dr. wants me to have another endoscopy to check healing.  Again, because of cost and my deductible, I am putting it off.  I can't understand the neccessity of having this every year.  It is extremely expensive.  Any thoughts on this as well?

Any info/advise is appreciated.  Thanks in advance!

How Often To Test?

01 April 2013 - 08:49 AM

Hi all!


I was diagnosed with celiac in November. Since I was diagnosed, my whole family is going through the testing process.


I know I carry both genes.  My boys (9 and 11) were tested and while they also carry the genes, they don't have celiac.  So far, neither of my sisters have celiac.   One of my nephews tested postive for celiac.  I have 2 other nephews who were tested last week and we're awaiting the results. 


My question is about my two boys. How often should they be retested?  My ped is not very knowlegable about celiac and will test as often as I want.   I plan to talk to my GI about it but have found very useful info here too.


What have others on this forum done? 



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