Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

md395

Help!

Recommended Posts

I live in rural wisconsin and was diagnosed with celiac disease and tested positive for Crohn's disease also. Still ill, (enlarged lymph nodes, biopsy/neg, night sweats, etc) I see that a lot of celiac's on this site have a lot of other diseases/conditions and /or have tests done to verify their health status. Most of these tests I have never heard of, let alone had done on me. What is a must as a "newly diagnosed" celiac to ask for from a doctor, to make sure my body doesnt have associated diseases/disorders, due to nutrition or from the celiac itself? I already undergo iron infusions, because my body is unable to absorb iron via supplements etc. Any suggestions or direction would be most helpful going on 6 months of chronic illness, been gluten-free that long also. Thank you all for you input. -mary :(

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Arm yourself with information and research when you go to your doctor. That he will know much about Celiac disease is highly unlikely. Avoid being a know it all but try to educate him/her with lead in questions and comments like, "Doctor, I read that . . ." "Should we look at . . .?" "Do you think . . .?" Occasionally bring something in print to show him. If your doctor is closed to education get another one. Actually, your best bet might be to go to a gastro enterologist since he specializes in diseases of the gut. Even then, however, there is no guarantee that a given gastro doc will be really up on Celiac disease. Your insurance might require you to get a referral from your GP for appointments with specialists, however.

Share this post


Link to post
Share on other sites
I live in rural wisconsin and was diagnosed with celiac disease and tested positive for Crohn's disease also. Still ill, (enlarged lymph nodes, biopsy/neg, night sweats, etc) I see that a lot of celiac's on this site have a lot of other diseases/conditions and /or have tests done to verify their health status. Most of these tests I have never heard of, let alone had done on me. What is a must as a "newly diagnosed" celiac to ask for from a doctor, to make sure my body doesnt have associated diseases/disorders, due to nutrition or from the celiac itself? I already undergo iron infusions, because my body is unable to absorb iron via supplements etc. Any suggestions or direction would be most helpful going on 6 months of chronic illness, been gluten-free that long also. Thank you all for you input. -mary :(

It is best to wait to explore whether you have other disorders related to celiac if you do not have glaring symptoms of any. The reason why I say this is that many things will 'disappear' on the gluten free diet and celiac impacts so many systems that many problems will clear on their own. Many of the diseases related to celiac are present because the celiac was never diagnosed and the antibodies have had a severe impact. There are some blood tests you should have done though, your vitamin and mineral levels should be checked and then it is a good idea to recheck again after 6 months to a year gluten-free to see if you are absorbing nutrients properly again.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

Share this post


Link to post
Share on other sites