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No Test for Celiac: Appreciation for Health

Test Before Suggest

Every time I hear when a doctor suggests, “Just try gluten free,” (before even testing for celiac) I shudder.  It’s great that there is recognition that gluten can be a factor in certain conditions, but….education is still lacking. The person who goes gluten free without testing will never know for certain if celiac is behind it all. 

Dear doctors: Please test for celiac before you suggest gluten free!

Reminder: I’m not a doctor or medical professional of any kind. I just wish all physicians knew that if a patient responds to a gluten-free diet it may be due to celiac disease. And they should know that once gluten free, celiac testing will be inaccurate. Celiac 101

Why not just test?—first?!

Always Sick

Joseph was diagnosed with celiac two years ago, at age 30, approximately five years after his most debilitating symptoms began. While he told me that he experienced symptoms for five years before removing gluten, Joseph also said that he had intestinal issues his entire life. So many of us later realized that we just learned to accept certain issues as normal. 

Referring to the five years before going gluten free, Joseph said that he felt like he was sick all the time. He started to experience flu-like symptoms that had him thinking he was getting food poisoning every few months. The doctor’s response?—‘It’s nothing to worry about.’ 

His doctor blamed him being sick on the fact that they had young kids in the house. Thing was, however, that no one else was getting sick. 

“I constantly had brain fog and would feel exhausted no matter how much sleep I got,” Joseph said. He also experienced unexplained low-grade fevers every few weeks.

Health problems progressed to a burning/tingling feeling in his back along the left side of his spine. This progressed until he was in constant pain. Joseph also shared that his hands often went numb and cold.

No Answers: Time to Get Pushy

X-rays. Nothing.

Physical therapy. No relief.

Joseph was eventually prescribed blood pressure medicine for his now increasing blood pressure. Knowing there was something wrong, some underlying cause to his health issues, he started to push harder for answers.

His doctor ran some blood work. The result: positive ANA.

“What’s ANA?” you might ask. I didn’t know either, so  I Google it. ANA stands for Antinuclear Antibodies.

A positive ANA test means autoantibodies are present. By itself, a positive ANA test does not indicate the presence of an autoimmune disease or the need for therapy.

It could, however, indicate an autoimmune disease — so he was referred to a Rheumatologist.

And Here It Is: "Give Gluten Free A Try"

Along with his referral to a specialist, Joseph’s physician also suggested, ‘Try gluten free and see what happens.’

“I was willing to give anything a try at this point,” Joseph said. He took his doctor’s advice without knowing that celiac could be behind all his symptoms, and without understanding that a person needs to be consuming gluten in order to be tested for celiac.

OK, I’m going to yell here, so cover your ears. WHY OH WHY ISN’T CELIAC TESTING COMPLETED FIRST?!  WHY?!!!!

“The first available Rheumatologist appointment was months out from this point and I started eating gluten-free as soon as I got the positive ANA,” Joseph shared. “By the time I got to the Rheumatologist, my health had improved greatly. My back pain was near completely gone and the numbness in my hands and feet went away.”

By the time he was able to see the Rheumatologist, Joseph’s second ANA tests came back negative. The suggestion? “Continue eating gluten free.”

A New Man

Joseph has now been gluten free for a year and a half. His life is changed. 

He shared that not only have the symptoms he originally sought answers for disappeared, but symptoms he didn’t realize he had.

Yes indeed, many of us can share that same statement. We learn to live with certain health issues and discomforts, thinking they are normal, not realizing they are underlying symptoms to a bigger health issue

  • No more high blood pressure—no need for blood pressure meds.
  • Increased energy—no more falling asleep in the middle of the day.
  • No more body aches.
  • No more pain.
  • No more heart palpitations or muscle spasms.
  • No more acne.

“I have more energy, feel like I can actually remember things at work and think clearly.” He used to miss a lot of work, but hasn’t required any sick time since going gluten free.

Joseph didn’t realize that the lifetime of bloaty/gassy feeling he experienced was abnormal—until it went away.

Why So Careful With Gluten Free?

It is hard for many people to understand why we need to be so strict with our gluten-free needs. But yes, “just a little” can cause damage and reactions. Joseph shared that he can generally tell within 30 minutes of ingesting even a small amount of gluten. 

“I have had a few episodes of cross-contamination and mis-reading labels and it causes me to be sick with most of my old symptoms for 3 to 5 days. I feel weak and tired the entire week and just want to stay in bed.”

Joseph’s reactions to cross contamination include: a splitting headache, skin that feels like it’s on fire, and a rash on his back and neck. He shared that these symptoms were more intense through his first six months gluten free than they are now, but they are still obvious reactions. The day after being glutened includes stomachaches and gas. On day three, the exhaustion and lethargy set in.

Genetic Testing

If Joseph wanted to be tested for celiac, he’d have to reintroduce gluten, eating it daily for at least 30 days. He doesn’t want to do that, understandably. 

He did, however, have the genetic testing done. That test came back positive. He at least knows he carries the gene. 

With the amazing results he experienced after removing gluten, Joseph and his doctor are fairly certain he has celiac.

The results he experienced upon removing gluten are enough for him. But, as Joseph shared, “I am just mad that I wasn’t tested ever during this few-year process.”

Transitioning to Gluten Free

“I thought I knew a lot about food and eating healthy,” Joseph said, “but looking for gluten is on another level.”

Joseph and his wife keep a minimal amount of gluten in the house: “some bread and chicken nuggets for the kids.” They are very careful about clean-up, removing the possibility for cross-contamination.

More Positive Impacts

Joseph’s improved health isn’t just impacting him. Joseph’s health impacts his entire family (in more ways than one).

Joseph is a healthier husband and dad. Not only because he’s gluten free, but because of what he is doing now that he feels so much better. He’s back to the gym, lifting weights and running. He shared that he can feel his strength build now, whereas before, “I felt like I was maxed out.” His running has improved and he feels that he recovers much more quickly after working out.

Another surprising health change. Joseph also shared something about his wife, making me hope to be able to eventually share her story as well! She decided to follow her husband’s new diet, and—-she lost over 100 pounds in the process!! Such a supportive thing for her to do—and such an amazing discovery to find that she benefited from gluten free as well. Makes me wonder if she should have been tested for celiac too! hmmm

Test For Celiac

Joseph wishes someone, somewhere along the line, would have suggested celiac testing. Once gluten free, there is no point. No gluten = no antibodies to test for. Once gluten free, damaged villi heal, meaning an upper endoscopy should come back with a healthy biopsy.

But he felt too good to go back to eating gluten to confirm a diagnosis.

This process, however, has put celiac on their family radar. When their daughter started experiencing stomach problems, they requested tests for celiac. Even with his own history, a simple request sadly wasn’t enough. They had to push to get her tested. OH.MY.GOSH! What is the big deal? Why is there such resistance to test for celiac?! 

I look forward to hearing her results.

An Amazing Attitude

I like to hear about the blessings this diet brings a person and their family. And even more, I like sharing these stories. 

A true love story and an inspirational quote: “My wife and I love to cook, and eating GF means cooking a lot of things from scratch. GF Thanksgiving was a ton of fun this year. I got the onion straws perfect this year.” 

What great role models they are for their kids!

With the new year approaching, I think this is an example we could all aspire to. Create some fun in the kitchen, and make this a family effort. Health is so very important. Support in the diet that is required makes the journey that much more do-able (and enjoyable).

Food is a necessary part of life. When couples enjoy that time together, preparing that food, what a true blessing that is!

Share A Story - Plant A Seed

Check out the Celiac Stories page for dozens of stories.
Be sure to request celiac tests before removing gluten from your diet.

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