Birthdays mean the choosing of names (well, for the actual birthday anyway), the assigning of social security numbers, etc. Why not find out about another ID before my birthday—MyCeliacID? Celiac gene testing.
Have you heard of this testing by Prometheus Labs? It’s an “at home,” saliva-based celiac genetic testing. The cost is $329 (less any discounts; codes that offer $80 savings are widely available). It takes all of 15 minutes to complete and then you drop off the package to a FedEx site/drop-off box—that’s it. NOTE: This testing is no longer available for individual consumers.
As I’ve shared before, I have never been diagnosed celiac. Traditional celiac testing was not conducted, per my doctor’s guidance. I’ve discussed the why’s on that topic before and we can talk about them again in the future, but for right now, I just want to share MyCeliacID.
You probably have many other questions about this testing. All of them should be answered in my report below. If not, there are additional links included; e.g., FAQs.
Why did I take the test? Well, other than the annual “reflections” I often pursue on my birthday, I had health care flexible spending account money to expend, plus I was curious. I also thought I could share the experience as well as any insight gained with my gfe readers and support group members. Please read the information in my report (key data is bolded, with my actual genetic results shown in red) and give me your thoughts.
Collection Date: 06/22/2010
Submitted for processing: 06/28/2010
Completed Date: 06/30/2010
>>Your Results: Positive
DQ Genotype Increased Risk Relative Risk DQ2 Homozygous 31x Extremely high >> DQ2 / Other high risk gene 16x Very high DQ2 / DQ8 14x Very high DQ8 Homozygous 10x High DQ2 Heterozygous 10x High DQ8 Heterozygous 2x Moderate DQ2 / Other low risk gene < 1x Low DQ2 negative / DQ8 negative < 0.1x Extremely low
» Your risk level: Very High
Your risk for developing celiac disease is very high. Patients with very high risk are 16 times as likely to develop celiac disease compared to all at risk individuals.
» What does this mean? Very High
You possess a combination of genes associated with risk for celiac disease. This does not mean you have celiac disease or ever will have celiac disease. Only a doctor can make a diagnosis for celiac disease. Diagnosis of celiac disease requires a small bowel biopsy for confirmation. If you have symptoms associated with celiac disease, please see your doctor and share your MyCeliacID test result.
» Alleles detected:
DQ2.2 (HLA DQA1*0201:DQB1*0202) and
DQ2.5trans (HLA DQA1*05)
About the Test
This test analyzed your saliva sample for the genetic sequences associated with risk for celiac disease. These genetic sequences are part of the HLA (human leukocyte antigen) DQ2 and DQ8 genes found on chromosome 6. Susceptibility to celiac disease (CD) is related to possessing the HLA-DQ2 and DQ8 genes, in whole or in part. This genetic test looked at 35 different alpha chains and 37 different beta chains (2 different chains found on the HLA) for HLA DQ2
and/or DQ8, and is the most detailed genetic test commercially available for celiac disease.
You’re Positive. Now what?
You tested positive for the genes associated with celiac disease. You are probably wondering what that means and what you should do now. Here are things to consider:
Talk to your doctor
Having the genes associated with celiac disease is one factor for developing celiac disease. There are other factors that play a role. It is important to remember that only a doctor or other qualified medical professional can make a diagnosis of celiac disease using the results of your MyCeliacID test with other clinical and laboratory findings. This means your doctor may order other tests and conduct further examination.
Ask yourself the following:
● Do you have a family history of celiac disease? If so, you should consult your doctor and share your MyCeliacID test result.
● Do you have symptoms associated with celiac disease like bloating, diarrhea, anemia, infertility, recurrent miscarriage, short stature, weight loss, osteoporosis, vitamin deficiencies, dental enamel defects and delayed puberty? All of these are common celiac disease symptoms. If you have any of these talk to your doctor and share your MyCeliacID result.
The Gluten Free Diet
While you’ve tested positive for the genes associated with celiac disease, only a doctor or other qualified medical professional can make a diagnosis. Unlike other conditions, celiac disease does not require surgery or a medication regimen. Most people see improvement of symptoms soon after they start eating a gluten-free diet. Food companies are now making a growing number of gluten-free options easily available. A gluten-free diet is a lifelong diet which is used to treat celiac disease. This diet should only be undertaken after careful evaluation by your doctor.
Educate your family
Celiac disease runs in families, so it’s important to talk with your family members about your tests results. Identifying risk is important for early detection and preventing symptoms and intestinal damage.
Get support and information
There are many support organizations with extensive educational resources. Empower yourself by learning more about celiac disease and the gluten-free diet.
If you would like to make an appointment with a genetic counselor, contact MyCeliacID Customer support.
Results reviewed by the Laboratory Medical Director. Information regarding genetic counseling is available through our website. The methodology for this test was validated at Prometheus. LiPA, Innogenetics, uses high-resolution sequence specific oligonucleotide (SSOP) with 2 separate multiplexed PCR amplifications and 72 probe hybridizations for the detection of HLA DQ2 DQ8 allelic variants. This test was developed and its performance characteristics determined by Prometheus Laboratories Inc. It has not been cleared or approved by the U.S. Food and Drug Administration. This laboratory is certified under the Clinical Laboratory Improvement Amendments of 1988 (CLIA-88) as qualified to perform high complexity clinical laboratory testing.
9410 Carroll Park Drive
San Diego CA 92121
Toll Free: 888/423-5227
Robert M. Nakamura MD Medical Director
Curtis A. McGuyer MD Associate Medical Director
Julie Doyle M.D. Ordering Physician
PROMETHEUS, the Link Design, and MyCeliacID are registered trademarks or trademarks of Prometheus Laboratories Inc.
Copyright ©2010 Prometheus Laboratories Inc. All Rights Reserved.
Prometheus Laboratories Inc. is accredited by the College of American Pathologists.
Looking at MyCeliacID, did I make the right choice to follow my doctor’s advice and go gluten free 7 years ago?
What do you think? If you eat gluten free, but are not diagnosed celiac, is this celiac gene testing something you are interested in? (FYI–I am in no way associated with MyCeliacID or Prometheus Labs. I’m just a customer.)
Or have you already had genetic testing for celiac?
There’s so much to discuss on the topic of celiac testing (and testing for non-celiac issues) … what compels one to get tested after going gluten free, how far one is willing to go with testing after going gluten free (i.e., that nasty term—gluten challenge), etc., but I thought I’d start with this info. Again, I’m curious to get everyone’s inputs.
Not just gf, but gfe!
Originally published July 14, 2010; updated May 15, 2019.