Were you referred to a Dietitian when you were diagnosed with Celiac Disease?

Question

When my husband was diagnosed, we were told we could find a lot of information about Celiac Disease on the internet and that we might want to talk with a dietitian.  However, we weren't referred to a dietitian, which would have been covered under our insurance.

Just wanting to know how many others were just given their diagnosis but not offered additional help, support, or even information about where to shop for gluten free foods.

Elana · Accepted Answer

When I was diagnosed with celiac more than 10 years ago, I was given no information other than to stop eating gluten.  This was a challenge, though with a good deal of research I figured things out.

I have found that the medical establishment is somewhat reticent to testing, diagnosing and providing assistance with this disease.  This is a shame since it is so much more than an allergy as people commonly think it is.  Celiac is a multi-organ system auto-immune disorder that can become life-threatening if not treated.  As you know, the only treatment is a gluten-free diet.

On my journey, I have compiled a website of recipes and information that may be of assistance to you and your husband:

http://www.elanaspantry.com/

I also think Dr. Peter Green of Columbia Presbyterian Hospital in NYC is a great resource.  He wrote Celiac Disease, A Hidden Epidemic.  His website is here:

http://www.celiacdiseasecenter.columbia.edu/E_About/E03-StaffBios.htm

I hope this helps; I know this is not an easy time and wish you the best of luck.

Glutenfreegirl · Answer

Honestly I've yet to meet a Celiac who benefited from a dietcian! Most have no more clue about celiac than the docs who bounce diagnosis off us! Since it takes a Celiac an average of 9 years to get diagnosed, its' doubtful the dieticitic (sp?) community has caught up if the GI docs havent yet! My own best friend is a RD and she really didnt have much to help me! 
Most Celiacs do their own research online and through valid support groups. 
U MAY find a dietician by contacting your local Celiac Sprue Association chapter bc each chapter needs a GI doc and a dietician on file for referrals. But that doesnt mean each RD with each chapter will actually be of help (some chapters have trouble actualy finding an RD who can help).
www.csaceliacs.org is where u can find your local group

These site are also very helpful
www.celiac.com
www.celiac.org
www.celiaccentral.org

Best of luck!
Amy, Chairperson Louisiana North Shore CSA Chapter 125

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Were you referred to a Dietitian when you were diagnosed with Celiac Disease?

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