Testing First Degree Relatives for Celiac Disease

Getting screened for celiac disease is simple, especially if you’re still eating gluten. Because it’s easy to be screened for celiac disease with a simple set of blood tests, it shouldn’t be that hard to convince your first degree relatives (mother, father, and siblings) to be screened for celiac disease. They are at a greater risk for celiac disease than others without a genetic risk.

Image with "Celiac Disease is a Genetic Autoimmune Disease. After diagnosis, all first degree relatives need to be screened for celiac disease, symptomatic or not"

Ask them to visit their general practitioner or gastroenterologist and have them run a celiac blood panel. This is a simple blood test that should be covered by their insurance (as they are at a genetic risk – 15x more likely). However, I understand that many of you have pushback from your family. Below I’ve compiled some potential questions from relatives and the feedback that I would recommend you give to them.

Why can’t I just start avoiding gluten?

Because you don’t need to go gluten-free if you don’t need to be. Now, if you’re experiencing digestive difficulties, that’s another story. But if things are okay, you should just get tested to see if you should even consider a gluten-free diet. No one should start a gluten-free diet without being screened for celiac disease first.

If you just start avoiding gluten without getting tested for celiac disease you might:

  • Miss the true diagnosis – something like ulcerative colitis, IBS or more.
  • Receive inadequate follow up care like a DEXA scan, nutritional deficiencies, follow-up blood work and biopsies, etc.
  • Be on a restrictive diet without need, increasing risk of social isolation, disordered eating, and decreased quality of life.

Why should I get tested if I don’t have symptoms?

You should be screened for celiac disease even without the presence of symptoms because sometimes celiac flies under the radar. Not only can celiac disease be asymptomatic – meaning no symptoms at all, but perhaps you have symptoms that you haven’t noticed. Because celiac disease is systemic, you might not be experiencing gastrointestinal symptoms, but maybe a “foggy mind,” fertility issues, sinus issues, joint pain, skin issues, balance issues, and more.

You might not know how good you can feel until you’ve been tested, receive a diagnosis, and fully remove gluten from your diet. Screening is the first step in a new life free from gluten, and free from symptoms that you might not have known are directly related to undiagnosed celiac disease.

I hate the doctor, I’m not going just for this blood test.

I get it. My parents don’t go to the doctor as often as they should, and about 1/10th the amount of time I go to the doctor. They certainly won’t go to the doctor just to take a blood test. I would suggest that they add this blood test to the next time they are getting routine lab work, or tack on the question of testing next time they visit a doctor. Just don’t let it slip by for years because of a fear of the doctor.

If they want to avoid going to a physical doctor, they can order an at-home test for celiac disease with imaware™. Learn more about imaware™ at-home celiac disease screening on my blog. I’m affiliated with this brand, but believe in the process as I got my own mom to get tested through imaware™ at-home platform.

My insurance won’t cover it.

That’s frustrating. Insurance is annoying, even without getting denied for a test. You should ask your physician to work with insurance to get your test covered by your insurance.

If you have terrible health insurance, or no health insurance at all, you can be tested at home with imaware™. You can learn more about imaware™ at-home celiac disease screening on my blog.

My doctor said I don’t need it.

Perhaps you need to find a new doctor. If you’ve presented the facts about celiac disease and your increased genetic risk, and your doctor is still denying your test – that doctor clearly isn’t educated about celiac disease. If you don’t have another option for doctors (like a specialist or gastroenterologist who may be more well-versed on celiac disease), you can opt for at-home testing with imaware™. You can learn more about imaware™ at-home celiac disease screening on my blog.

Celiac Disease isn’t that serious.

Celiac disease is very serious. Without following a gluten-free diet, those with undiagnosed celiac can lead to fertility issues, additional autoimmune diseases, or even intestinal lymphoma. It’s serious.

Regardless of the excuse, or questions, all first degree relatives of someone diagnosed with celiac disease should be tested.

Erica showing off an imaware box circa 2019
imaware™ is an at-home testing option for celiac disease screening

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1 comment

  1. amy May 22, 2020 at 8:37 am Reply

    Great info! I have a celiac mom, sister and nephew. All were diagnosed years ago, and two have had serious related health issues, even several miscarriages. I’ve been so wrapped up in neurological issues, I have yet to be tested. This is just the encouraging reminder I needed. Thank you.

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