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Questions and discussion about monoclonal gammopathy of undetermined significance (i.e., diagnosis, risk of progression, living with the disease, etc.)

DNA testing for celiac disease?

by Eugenia on Mon Mar 30, 2015 4:58 pm

I've been reading about a possible link between celiac disease and MGUS, and that the way to diagnose celiac disease is through a DNA test. I've also had abnormal (high) liver function tests lately, but an ultrasound of upper right quadrant showed no abnormality of liver, pancreas or gallbladder.

Can / will a(n) MGUS doctor order genetic testing for celiac?

Eugenia
Name: EVH
Who do you know with myeloma?: self - MGUS
When were you/they diagnosed?: 2013
Age at diagnosis: 58

Re: DNA testing for celiac disease?

by Cheryl G on Mon Mar 30, 2015 6:53 pm

Hi Eugenia,

My understanding is that the standard testing for celiac disease involves antibody testing followed, if necessary, by an endoscopy and/or biopsy. See, for example, the explanation about diagnosis in the Wikipedia article on celiac disease,or just google "celiac disease diagnosis" and you'll find similar descriptions of the diagnosis process.

The Celiac Disease Foundation actually specifically cautions against using DNA testing to diagnose celiac, saying:

"People with celiac disease carry one or both of the HLA DQ2 and DQ8 genes. So do up to 40% of all people. Since only 1% of us has celiac disease, carrying HLA DQ2 or DQ8 is not a diagnosis of celiac disease nor does it mean you will ever develop celiac disease."

So you might have trouble getting any doctor, whether your MGUS doctor or your primary care doctor, to prescribe such testing.

Do you have symptoms of celiac disease?

Cheryl G

Re: DNA testing for celiac disease?

by PlanTime on Sat Aug 01, 2015 3:18 pm

I have celiac disease, and now I have a tentative diagnosis of MGUS. The industry standard, the one test that no doctor will argue with, is the biopsy of the small intestine. It is the most accurate. The only problem with that test is that you have to be consuming gluten right up until the samples are taken. I don't know if an oncologist or hematologist would order any tests for celiac, but your primary care doctor might.

PlanTime
Name: ~Dessa~
Who do you know with myeloma?: Possibly me
When were you/they diagnosed?: July 2015
Age at diagnosis: 51

Re: DNA testing for celiac disease?

by beatricenordberg on Wed Aug 19, 2015 9:15 am

I just learned about the possible connection of celiac disease and multiple myeloma. I would very much appreciate you letting us know if a gluten free diet will have an impact on your progression of the disease. I have had MGUS for 6 years, and since I have at least 3 autoimmune diseases, I have gone gluten free. It has made a major difference.

Hope to hear from you.

beatricenordberg


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