Vitamin Malabsorbtion, Joint Pain, Fatigue And Rash

[shelly40]

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!

[cyclinglady]

Good for you for complying with your diet! It is such a huge adjustment.

I can not speak to your other issues, but can share my story. My blood panel came back mildly positive, but my biopsy showed marsh Stage IIIB. My one year follow-up is coming up at the end of March. I expect my blood test to be in the normal range, since I have been cooking/shopping for my husband who has been gluten-free for 13 years. He is healthy, so I am confident that I have the gluten-free diet down pat. Plus, my blood test was barely positive. I do not know if my doc will want to scope me (he did mention it at my last visit) but I do not think it is necessary yet. I think my intestines need more time to heal. I had some pretty severe damage and if I look back at my CBC blood tests, my Ferritin and Vit. D levels have always been low going back a decade or more, so I suspect that I have had celiac disease for years and years. I have thalassemia, so the docs just attributed my anemia to that and low iron to heavy periods which were attributed to Hashimoto's thyroiditis and peri menopause.

I just had some blood work done, so if will know more in a few days. I continue to take all my vitamins, though none of my docs have suggested anything other than iron, calcium (had a fracture) and have prescribed HRT to help with bone growth.

Have you had a complete thyroid panel? Lots of folks here on this forum have it as well.

I hope others can provide more suggestions.