There is much debate around the subject of gluten. Researchers continue to publish studies with new findings, and people continue to adopt a gluten-free diet — both those who have been tested for celiac disease and those who haven’t. For those who have been tested and diagnosed, the seriousness of their disease is sometimes scoffed at or looked at with skepticism due to the fact that their diet is not only a medical necessity but also has become a fad. And for those who haven’t been tested but adopt a gluten-free diet anyway, there are varying degrees of annoyance expressed at their choice.

My Experience

My blood test indicated celiac disease, but I did not go through with the small intestinal biopsy to confirm what the blood test suggested. At the direction of my doctor and nutritionist, I cut out gluten and added different foods to my diet to ensure that I wasn’t eliminating essential nutrients, and I indeed felt much better. I don’t feel the need for the biopsy to tell me whether I do or do not have celiac disease. If I do, I’m already eating gluten-free. If I don’t, I’m still going to eat gluten-free because of how much better I feel doing so.

If you feel better when you don’t eat gluten, then don’t eat gluten.

For many gluten-free eaters who have not been diagnosed with celiac disease, this is a statement, and a choice, that is met with much criticism.

“‘Gluten intolerance’ is not a real thing.” (Or, a variant: “There is no such thing as ‘non-celiac gluten sensitivity.'”)

“You haven’t been tested; you’re just jumping on the bandwagon.”

“Wheat allergies aren’t as bad as celiac disease.”

Etc.

Gluten Intolerance Is Not A Real Thing

I’ll start with the first: “‘Gluten intolerance’ is not a real thing.” If someone is intolerant to gluten, it means, by definition, that he or she is unable to take gluten into the body without becoming sick. Regardless of whether “gluten intolerance” is or isn’t also used as a medical phrase, its idea — what it indicates — is, indeed, a very real thing.

Gluten intolerance = the inability to ingest gluten without becoming sick.

So: If I am gluten-intolerant and I ingest gluten, then I will become sick.

True: If I ingest gluten, then I become sick.

True: I am unable to ingest gluten without becoming sick.

From this, I deduce that I am gluten-intolerant.

If ingesting gluten makes me feel sick, then I’m not going to ingest gluten.

Those who have been diagnosed with celiac disease are inherently gluten-intolerant, because they are unable to take gluten into their body without becoming sick. This statement does not necessitate that those who have not been diagnosed with celiac disease cannot be gluten-intolerant. (Nor does this statement mean that celiac disease and gluten sensitivity/intolerance are the same thing. Celiacs show intestinal damage, while those with gluten intolerance do not — yet.)

You Haven’t Been Tested; You’re Just Jumping On The Bandwagon

With that, we arrive at the second: “You haven’t been tested, you’re just jumping on the bandwagon.” Perhaps this is true for some, but there’s plenty of room on the bandwagon. Sure, fads can get annoying, but it is false that because going gluten-free is a fad, it’s not also a serious medical need. As far as those who are gluten-free not just to jump on the bandwagon, again: I eat gluten, I feel sick. I don’t eat gluten, I don’t feel sick. If I decide at this point to adopt a gluten-free diet without getting tested, it’s because I’ve come to a logical conclusion. (But note: For those who do plan to get a blood test, you need to keep eating gluten beforehand so that your test yields accurate results.)

Wheat Allergies Aren’t As Bad As Celiac Disease

To the point that “wheat allergies aren’t as bad as celiac disease,” everyone has their own experience. This may be true in some cases, and false in others. Because of this, as a generalization, it is inaccurate. There are different severities of gluten intolerance, many similarities between allergies and celiac disease, and also many differences. But whether I am allergic to wheat, or have celiac disease, I’m going to stay away from whatever makes me feel sick.

Gluten-Free Intolerance

The surprising thing is not that new research sometimes brings older research into question, or that there is still much to learn, or that the language we use to discuss gluten intolerance will evolve, as language does. The surprising thing is that gluten intolerance has spawned gluten-free intolerance in some.

To me, and possibly others who cannot tolerate gluten, it doesn’t matter much whether it’s a fad, or if “gluten intolerance” is a proper scientific term, or if my declining the bread basket at a dinner vexes someone else at the table. What does matter to me, fundamentally, is that I feel better when I don’t eat gluten. So I don’t eat gluten. Do many of us who are gluten-free want to educate ourselves further? Yes. Do many of us want to know for sure what type of intolerance we have, whether it’s celiac disease, a wheat allergy, gluten sensitivity, or something else? Yes. Should we anticipate that there will be new findings that may call into question the current, most convincing studies? Yes.

I’m open to being persuaded. But in the meantime, I’ll listen to my gut.

– Kaitlin Puccio