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Gluten Free: Do You Need To Validate Your Diet?

Gluten Free: An Accidental Discovery

Laura was never tested for celiac or for a wheat allergy (which are two very different things, of course). Like so many of us, she wasn’t connecting her health issues to food. It was a few-months trial with a Keto diet for weight loss that opened her eyes. While she eventually stopped following Keto, she kept the gluten out. But does she require a test to validate her reasons for being gluten free?

She had blamed her 10 years of symptoms on outdoor allergies. Starting around age 18, she struggled daily with an itchy mouth and nose. She didn’t make the connection to food until she started Keto (and the itching stopped).  

Over the 2 ½ years that she’s been gluten free, the only time her symptoms reemerge is when she accidentally ingests gluten.

Celiac? or Wheat Allergy?

Since eating wheat and gluten causes her reactions to last 3 to 4 days, Laura didn’t want to purposely ingest it for testing. Contamination brings back the symptoms she had before removing wheat and gluten, which is enough proof for her; she has no doubt of her reactions. But does she have a wheat allergy, celiac, or both? Or maybe she has nonceliac gluten sensitivity? 

This journey of seeking answers often means that the tests required to confirm answers get overlooked until it’s too late to test without having to reintroduce foods that make a person feel miserable.

Of course, having black and white answers is validating. It gives us a piece of paper to hold up and wave. It gives us permission to announce to the world, “I have celiac” or “I have a wheat allergy,” or “I have . . . “ It give evidence that a person has to be 100% gluten free, especially, and most importantly, for the person who needs to be.

This is one of the reasons I like sharing these personal stories. Awareness. Testing. Education. My hope is that people will recognize themselves and their symptoms (or a friend or loved one’s symptoms) and request testing before removing gluten. 

Getting answers isn’t always easy, but they aren’t possible  (through testing) once gluten is removed.

Validation vs Personal Report

When reading Laura’s story, I found myself wondering, ‘is it celiac or is it wheat allergy?’

But does that matter? Of course, they are two very different things: celiac is an autoimmune disease and wheat allergy is an —-allergy. Consequences of ingestion would also be very different. 

But does it matter (to me or to you?) Laura, like so very many, has made the connection between certain foods and her health. Shouldn’t what she learned about her own body’s needs be enough? Having answers is great, of course, but she has her answer through the health she experienced. Is it my business (or anyone else’s) how she eats? 

A lack of that “certificate” (or test result) means we need to rely on ourselves. But shouldn’t that be validating enough?

I have cognitive, neurological (and simply miserable) reactions to chemicals in fragrances. (Adverse reactions to chemicals in fragrances isn’t rare, by the way.) It’s not something that can be tested for. It is patient response and patient report. I know, without a shred of doubt, that chemically scented products affect me (hugely). Who, in their right mind, would make something like that up?! 

If an ingredient or substance makes a person’s life miserable, shouldn’t we respect their report as real? When it comes to our health before removing gluten, too many of us can report being told, “It’s in your head” (either in those words, or in round about ways)—-and that, my friend, is a very sad thing.

For me, having a celiac diagnosis was so extremely validating. My health that followed was even more validating. I was personally glad to have that “celiac certificate.” But what about those who don’t have it? Does this mean we respect their health any less?

‘I don’t eat this and I feel great! I eat that and I feel miserable.’ Who is anyone to judge that just because a person doesn’t have an official “celiac badge” that they can’t experience a better life by removing gluten?

*When I DO Care

Whether a person has test results that validate or not, if a person is gluten free because it improves their health, that should be respected (in my nonmedical opinion). 

When it becomes a problem (for me) is when someone says they are “gluten free” but doesn’t take it seriously. 

Laura does. Her kitchen is 100% gluten free. She is careful about what and how she eats. I know MANY without an official diagnosis who treat their gluten-free needs as though they have celiac.

When it can be challenging, however, is to have a family member, friend, coworker, etc who says, “I need to be gluten free,” but isn’t cautious about cross contamination. They might eat the pie filling, leaving the gluten filled crust, or the icing off a gluten-filled cake. They might even sneak a piece of regular pizza, saying, “I couldn’t resist.” And they aren’t like their friend or family member who respects this diet who asks the restaurant manager all the important questions. They lack Gluten Free Respect.

This is NOT “gluten free.” The person with celiac has to be 100% compliant. No crumbs. “I need to read every label with a fine-tooth comb” careful. Gluten Free Respect is required!

The person who doesn’t care about cross contamination, and says “I NEED to be gluten free” just makes it more difficult for those of us who take it seriously to be taken seriously. 

And that —-is a shame.

How Did Removing Gluten Improve Laura's Life?

Joint pain—gone. Pain is restrictive. Without it, Laura is now free to enjoy more activity. She is having a lot of fun with ballroom and salsa dancing. No celiac certificate, but no gluten means she can DANCE—for hours! Isn’t that worth it?!

Disappearing bumps. Laura said that her thighs and the backs of her arms were covered in bumps (chicken skin) for as long as she can remember. They didn’t go away until she removed gluten.
She reports having better concentration at work (without the itchy eyes). No more hives (unless she accidentally ingests gluten or wheat). Cross contamination means quick results in hives on her neck, face, and chest. The next day she faces cystic acne on her shoulder blades and back.

In my search for a connection between gluten and acne, I found several posts relating anecdotal evidence. This article from NDNR, Naturopathic Doctor News and Review shares four case studies related to gluten-induced inflammatory skin disease that presents as acne.

Another (is it Celiac?) Clue:

Celiac is genetic, and, as Laura recently discovered, it runs in her family in a big way. She couldn’t help but notice that many potluck dishes at a family reunion were marked “gluten free.” At first she wondered if others were accommodating her gluten-free needs. In talking with  a family member, however, she learned that many of her relatives on her grandmother’s side had actually been diagnosed with celiac disease.

Connecting With Community

Laura became active last summer, working together with the gluten-free community and local businesses. It is so very rewarding to connect with others for support and safe dining accommodations.

Share A Story - Plant A Seed

You never know who may be experiencing similar symptoms. Share this story, or any of the other celiac stories on this blog, and plant some seeds. 

Be sure to request celiac tests before removing gluten from your diet.

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