The Weirdest Thing About Gluten Sensitivity



Updated April 9th, 2015

Today’s topic for National Health Blog Post Month is “the weirdest thing about my health.” This is difficult because there is not just one thing weirder than anything else about Gluten Sensitivity. Everything about Gluten Sensitivity is weird!

Up until recently, everyone I met (who did not exhibit my same disease symptoms) thought I was “weird.” Doctors, my family and friends, and even people with diagnosed Celiac Disease (CD), did not believe me when I told them I couldn’t eat gluten. Now more and more people are accepting this, so its getting a little less weird.

But even the name of our condition is weird, because it keeps changing. For so long, people like me who have not been diagnosed with celiac disease, have been saying they have a gluten intolerance or are gluten intolerant, or have Non-Celiac Gluten Intolerance or NCGI. Sometimes we also say that we have a gluten allergy, so that people take it more seriously. But now that this condition has finally been given official medical status, it’s now being called Gluten Sensitivity (GS), which is fine, I guess. I don’t know if shows the seriousness of the disease. But either way we have to change our lexicon again. At least we won’t be called “Celiac Wannabes” anymore!

But just because we have an official name for our disease doesn’t mean we understand it. What’s so weird about Gluten Sensitivity is that reactions to gluten may happen anywhere from hours to days after ingesting it. And when reactions take this long, its hard to pinpoint it back to gluten. If you eat a strawberry and your face swells up immediately, its obvious that you are having an allergic reaction to strawberries. But if it takes days for your body to react to gluten, you may never get the connection.

Another weird thing about Gluten Sensitivity is that it affects people in a variety of different ways and not everyone experiences the same thing. While digestive distress is the most obvious symptom related to Gluten Sensitivity, some other common symptoms of the disease include behavioral changes, bone or joint pain, muscle cramps, weight loss, chronic fatigue, abdominal pain, eczema and/or rash, headache, ‘foggy mind’, fatigue; diarrhea, depression, anemia, and numbness in the legs, arms or fingers. This is by no means an exhaustive list. There are nearly 200 conditions associated with gluten, and possibly more than are on this list.  The symptoms that I experience when I eat gluten, brain fog and abdominal pain, for instance, are not exactly the same as someone else with Gluten Sensitivity. Someone else may get skin rashes and experience diarrhea and weight loss. Which makes this disease very weird.

And because of all these different delayed reactions that show up differently for each person, and because they’re not always symptoms of the digestive tract, and because there are “currently no laboratory biomarkers specific to GS,”* it’s a very hard disease to diagnose. Doctors usually diagnose any number of different disorders first. The only way you can really know for sure is by eliminating gluten from your diet, then “challenge” your system by re-introducing it. But most traditional doctors don’t even look at food as a cause of disease. So you can spend thousands of dollars on colonoscopies, biopsies, blood tests and the like (I have!), and still be told that you are ok, even though you know that you’re ill. How weird.

Another weird thing about Gluten Sensitivity? It can lead to other food intolerances. Damage from gluten can cause intestinal permeability or “leaky gut syndrome”. This is where the lining of the intestine forms little holes through which food proteins and other particles, meant to be eliminated from our bodies, can actually seep into the blood stream, causing a variety of other problems, including increased sensitivities to other foods. For me, it was grains of any kind, all legumes, and seeds of any kind (including chia seeds, flax seeds), as well as dairy and soy, and refined sugar. So when I’m in a conversation with a friend and they find out I can’t eat gluten, they say, “that must be hard.” But when I tell them I can’t eat dairy and soy, either, they start to think that I’ve got some serious problems. I usually don’t bring up the grains/legumes/seeds/sugar thing, because that’s just plain weird. (For the record, some of these foods I am able to start eating again, bit by bit). At the same time, if you asked another Gluten Sensitive person if they had other food allergies, they may tell you that they can’t eat corn or eggs, or react to coffee. Weird. Again.

Another weird thing about Gluten Sensitivity? It can often lead to autoimmune disorders. Some people say that autoimmune disorders come in pairs and that Gluten Sensitivity is one autoimmune disorder so it seems likely that I would have another autoimmune disorder. I’m not sure of the truth of that. Celiac Disease, we know, is an autoimmune disorder. But according to this new medical status for Gluten Sensitivity, GS it is not considered an autoimmune disorder. So is it that autoimmune diseases do come in pairs, or does gluten actually cause autoimmune diseases and Celiac Disease is the most obvious manifestation? I do have Graves Disease, an autoimmune disorder of the thyroid gland.  And I blame that on eating gluten, when I didn’t know that I had a sensitivity to it. Had I been gluten-free all my life, would I have been spared this thyroid disease? I’m not sure. But when I tell friends that I have a Gluten Sensitivity, several other food allergies, and a thyroid disease on top of it all, I’m just getting weirder by the minute! At the same time, if you asked someone else with Gluten Sensitivity if they had any other autoimmune conditions, they might tell you that have Sjogren’s disease. Or Lupus. Or Psoriasis. It just keeps getting weirder.

Finally, one last thing that’s weird about GS, is that its not Celiac Disease. It is a “condition distinct from CD… However, the two conditions cannot be distinguished clinically, since the symptoms experienced by GS patients are often seen in CD”.  So does this mean I should take it as seriously as CD? I do. I am careful about cross-contamination, because I do react to even a little bit. Others may not react to such small amounts, but Celiacs have to watch out for every little bit of gluten, even if they don’t feel a reaction. Should GS patients be just as strict? I think so. Better to be safe than sorry.

And as with CD, does GS run in families? Should I put my kids on a strict gluten-free diet, if they don’t exhibit any symptoms? Nobody knows. It’s all so weird. For the record, we eat gluten-free (and paleo) at home, but at birthday parties and other special occasions, I allow my son to indulge in gluten. Because I just don’t know. Since he’s never shown sensitivity to gluten, can a little now and again really do him any harm? But my daughter has exhibited sensitivity to oats, peanuts and gluten, so she is on a mostly paleo diet both in and out of the home. I used to struggle with restricting my son some of the “joys of childhood”, possibly unnecessarily so, with the possibility that I might be setting him up for harm later in life. But now I am pretty certain that gluten isn’t good for anyone anyway, so I believe less gluten is better for him no matter what.

The only thing that isn’t weird about Gluten Sensitivity is that it is a real condition, not a figment of our imagination. And now that is has reached official medical recognition, there is hope in increasing our understanding of the disease, getting more people diagnosed, and unraveling some of the mysteries surrounding it.

Is there anything else you find weird about Gluten Sensitivity, that I didn’t mention?





* All quotes are from the article, Spectrum of gluten-related disorders: new nomenclature & classification


  1. Rina

    i too the same problem, no grain with gluten and no grain gluten free, no coffee, no cioccolate, no industrial products gluten free, no rise, no legums, no milk, no cheese, just a litle goat's yogurt of my productions. Now I even taken oil olive and eggs because I caused diarrhea. Now i make paleo diet but also group blood diet is good for me.

    I was visited by a collaborationer of doctor Fasano he told me to check my relatives. my mother has celiac disase. attention your children. ALWAYS a parents or children has celiac disase when someone in the family suffers from gluten sensitivity!

    I also had same problem with my friends, teatred like a crasy.

    I understand you…

    sorry for my english: I'm italian


  2. Heather Jacobsen

    Hi Rina,

    Thank you so much for your comment. I always like to hear from others in the gluten-free community. Its incredible how similar we are! I also pretty much follow the paleo diet, and the blood type diet. 

    But were you diagnosed with celiac disease? I have not been, but it wouldn't hurt for me to check my children anyway. 

  3. Rina

    I also when I readed your story I thought: but this is like me! yes I have make often all analysis for celiac, but always negative.

    we are exceptional case between people with gluten sensitivity. the dr Volta, the best dr in Italy after Fasano, they are collaborators, told me that they know nothing of we. but know that we exist, an average 3 cases every 108 stady in Italy are like we.  (all we have in common one relatives celiac: or mamma, or brother or sister or children, often they aren't symptoms).

    I hope you make analisy you relatives. dr Volta no mistake.

    now I' m better, always I lissen my bady after past. runny nose, cought, itching and moments of anxiety. but I'm always warried. and you?




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