5 Reasons You Need Celiac Disease Testing

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I hear it so many times. “What good is a Celiac Disease diagnosis if not eating gluten makes me feel better?”  I especially hear it from those who have already removed it from their diet, so they can’t accurately get tested for Celiac Disease. Well, it makes a lot of difference. Here at at least 5 reasons why you need Celiac Disease testing.

1) Because Your Stomach Problems Might Not Be Related To Gluten

celiac disease testing stomach problems

I originally wanted to title this article, “Why you should still be eating gluten.” A friend told me my followers may have thought I’d lost my flippin’ mind. But it would have caught your attention.

I want to catch your attention. Taking care of our health is our own responsibility, but sometimes that involves seeing a doctor. True, you may stop eating gluten and you may feel better.

However there could be other health issues that are lurking beneath the surface. These include –

I don’t want to turn you into a hypochondriac. However, I also don’t want you to trust Dr. Google for a diagnosis. Please, see a doctor. Ask to be tested. Demand to be tested. And if they won’t, find another doctor.

2) Because You Can’t Seem to Lose Weight

celiac disease testing overweight

The world of Celiac Disease has drastically changed over the decades. Doctors used to believe that it was a wasting disease and all Celiac Disease patients were thin. Au contraire, mon frère. Many people diagnosed with Celiac Disease are overweight or even obese.

My friend’s undiagnosed Celiac Disease actually prevented her from losing weight. In addition, a personal comment about weight and eating gluten-free. When I started my gluten-free diet, I gained a lot of weight. Like 60+ pounds. Eating gluten-free is not always healthier and does not always equal weight loss.

3) Because Your Family Will Thank You

celiac disease testing genetics pass to grandchildren

Celiac Disease is a genetic condition. That’s right, you can pass it on to your children. This is why Celiac Disease testing is so important. If your tests come back positive,  your family needs to know this for future generations.

If you have the genetic testing done and you do NOT appear to carry the gene, it is nearly impossible to have Celiac Disease. However, if you do have the gene, it doesn’t mean that you do have it. 30% of the population carries the genes for Celiac Disease, but only 1% develop it. However, you’re still able to pass on the gene to future generations and they can develop it

4) Because A Celiac Disease Diagnosis May Help You Stick to the Diet

say not go gluten

A little bit won’t hurt, right? Sorry friends, yes it will. Foods that are gluten-free must test less than under 20 ppm. That’s less than a 1 tsp in a 40 lb bag of flour. Pretty strict requirements here. Some people don’t strictly adhere to this diet if not properly diagnosed. This is why Celiac Disease testing is important.

If you have Celiac Disease, you can’t cheat on this diet. The damage gluten does to your body can affect other biological systems as well. Some people with Celiac Disease are asymptomatic. We call them a “Silent Celiac.” Don’t be misled. Gluten continues to damage the lining of the intestinal wall, even if you don’t “feel it.” Don’t play around with this folks.

5) Because Celiac Disease Testing Helps Us All

celiac support group

So you submit your self to Celiac Disease testing. You find out that you don’t have the disease. The testing isn’t for naught. Maybe your body really does hate it when you eat gluten. It’s possible that you have Non-Celiac Gluten Sensitivity. The cause of this is being highly researched, and your blood work might provide further insight. Also, ruling out a diagnosis may get you closer to a real answer for your malaise.

What if your test results show you do have Celiac Disease? You become part of a larger community that needs your voice. It provides you legal benefits. These legal benefits help the rest of the world to take our disease that much more seriously.

“Is It Worth Eating Gluten Again to Get Tested?”

Maybe you’re already on a gluten-free diet. Maybe you’re wondering if it’s worth it to get really get tested. I can’t make that decision for you, only you can. I can tell you that a proper diagnosis is beneficial. It helps you know what other health issues you could be facing due to your autoimmune disease diagnosis. Please, if you’re considering changing to a gluten-free diet, don’t do so without first going through Celiac Disease testing. You and those around you will thank you.

**Note- The University of Chicago Celiac Disease Center suggests that patients should eat one slice of gluten-containing bread, daily, for 12 weeks prior to blood antibody screening. A shorter gluten challenge is possible for endoscopy.**

“My Doctor Says I Can’t Have Celiac Disease Because I’m Black.”

No, I’m not making this up. There are Black people I’ve personally talked to who’ve said their doctors told them this. To put it plainly, those doctors are wrong. While current research data shows Celiac Disease is less prevalent in Black communities, that doesn’t mean it’s impossible. I met someone from Ethiopia who had Celiac Disease, so it’s definitely possible.

And to be honest, we know that minorities, especially in the United States, suffer from inequities in health care. In my opinion, more research needs to be done on the prevalence of Celiac Disease in minority populations. Beyond Celiac and the National Minority Quality Forum are partnering on an initiative on this topic right now.

What were your biggest reasons for getting tested for Celiac Disease? Did you get pushback from your doctor, only to have lab tests prove you have Celiac Disease? Please feel free to share your story, below.


  1. I was 55 when diagnosed. Had been seeing an Internist for 10 years as he removed polyps many times. Lost all my hair. Could barely see or walk. Couldn’t work or drive. Had viruses all the time. Migraines were unbearable. Brain fog was so severe, didn’t know my name or anyone elses. most of time. Had a ringing in my left ear 24 hours a day. My face was distorted from the pain. The last 6 weeks before being diagnosed I couldn’t eat. If I smelled food I would become sick to stomach. I was having 18 episodes of diarrhea daily. I was loosing 1 to 1 1/2 lbs daily. My family doctor called me at 7 am one morning to tell me my vital organs were shutting down and I was dying. She wanted me to see one more doctor. So at 9am I was in his office. He took one look and put me in hospital. That is when I learned I had Celiac disease. Never heard of it, but boy did I learn fast. I had to learn to re-eat food again. One tablespoon at a time. Since then and learning all I could, I believe Celiac started at 9 months of age with me with Febrile seizures. I was so lucky to have my gastro doctor, Dr. Murray from Mayo and Dr. Fasano on my side as I healed. I gained 65 pounds while healing. 30 extra I don’t need, but it just stays. Guess my system doesn’t want to go into starvation mode again. The other regret I have, my Mother and Sister passed and I believe they also had Celiac. My Grandfather passed in 1946 and I believe he had Dermatitis Herpetiformis Disease. My Daughter and Granddaughter both have tested positive for Celiac.

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