Not too long ago, people considered any diagnosis of gluten intolerance that wasn’t celiac disease to be unconventional. Today, however, there are several different possible non-celiac gluten intolerance diagnoses recognized by even the most skeptical of conventional doctors. While more may arise as we continue to learn about this troublesome protein composite and how it impacts our bodies, the following conditions are all possible diagnoses even if you have tested negative for celiac disease.
In laymen terms, people are widely using the term gluten allergy to represent the collective of all these terms, despite how some of these are not really allergic reactions.
Use this Table of Contents to navigate these four forms of Non-Celiac Gluten Intolerance:
All of the following conditions are related to ingesting either wheat or gluten. For a good foundation on the unique protein composite known as gluten, see my comprehensive guide: What Is Gluten?
While I have written about NCGS on the Gluten Intolerance School for several years now, it only became widely recognized as its own legitimate condition in March of 2011. In a study published in the BMC Journal, several of the most respected medical experts on celiac disease announced the verified existence of a form of gluten intolerance that was distinct from celiac disease or a wheat allergy and could be present despite negative test results for both celiac disease and a wheat allergy.
They still haven’t isolated specific biomarkers for formally diagnosing this condition, but the common name applied to it is non-celiac gluten sensitivity. For now, the only way to diagnose this condition is to verify the presence of a reaction to gluten, while also determining that this reaction isn’t due to celiac disease or a wheat allergy. Taking a gluten intolerance test can help either diagnose or rule out celiac disease or a wheat allergy.
So if your doctor feels confident gluten is causing your problems but you test negative for celiac disease and a wheat allergy you will be diagnosed as being Non-Celiac Gluten Sensitive (NCGS). Currently researchers estimate that around 10% of all people suffer from some degree of this sensitivity (yes, one in ten people!).
The symptoms of a non-celiac gluten sensitivity dovetail with those of celiac disease, so you can read gluten allergy symptoms, celiac disease symptoms or my home page to help you understand the full spectrum of health problems caused by a gluten sensitivity. Note that many doctors believe these symptoms tend to be less severe and consequential in people with NCGS than in people diagnosed with celiac disease… but don’t tell that to anyone suffering from it.
In addition, recent research suggests NCGS symptoms are more commonly extraintestinal than celiac disease symptoms. This means someone with NCGS may experience more symptoms unrelated to digestive distress compared to someone with celiac disease.
This one may seem obvious, but believe it or not I have heard of doctors overlooking this possibility. You can test negative for celiac disease but still have a wheat allergy, so it is important to have an immunology specialist conduct proper allergy testing to determine if you have a wheat allergy, even if you have tested negative for celiac disease.
There are many possible allergens in wheat, and not all of them are related to the proteins in gluten. A wheat allergy is a type 1 hypersensitivity, unlike the other conditions listed on this page, that involves the antibodies IgE (Immunoglobulin E) rather than the gluten antibodies. That means if you have a wheat allergy you will likely experience significant and evident symptoms either as you are eating something containing wheat or within a couple of hours of eating anything containing wheat. Read my article wheat allergy symptoms for help identifying this specific condition.
Dermatitis Herpetiformis (DH), or Duhring’s disease, is a gluten allergy rash that develops as a result of a reaction to consuming gluten. While it is often a symptom of celiac disease, you can test negative for celiac disease (or a wheat allergy) and still test positive for dermatitis herpetiformis.
To test for dermatitis herpetiformis, an experienced dermatologist will take a small sample of skin adjacent to the rash. If he or she finds IgA, the antibody triggered by gluten, in that sample, you will be diagnosed as having this skin-borne manifestation of a sensitivity to gluten.
Make sure the dermatologist is experienced in testing and diagnosing DH because if your skin is not properly biopsied you may be misdiagnosed with linear IgA disease. While some people consider linear IgA disease another gluten-related condition, current data suggests a correlation to gluten in only 20% of people with a verified case of linear IgA disease. Linear IgA disease and dermatitis herpetiformis look and feel very similar, so only an experienced dermatologist and a quality lab will be able to distinguish the two conditions.
Read more about DH in my guide: Dermatitis Herpetiformis Symptoms.
Gluten ataxia is the least understood of these conditions. Ataxia is a non-specific diagnosis for neurological signs manifesting as poor voluntary muscle coordination. Gluten ataxia is a form of sporadic cerebellum ataxia where gluten is believed to be the trigger. When a doctor diagnoses you with idiopathic sporadic ataxia, he or she should consider the possibility that gluten is the trigger. This diagnosis should be considered even if you have already tested negative for celiac sprue disease or an allergy to wheat.
In the simplest terms, if you experience a strange increase in your clumsiness or decrease in coordination, gluten ataxia could be a possibility. Diagnosing this form of non-celiac gluten intolerance involves testing for markers such as IgA deposits versus TG2 in the small intestine as well as extraintestinal locations. This form of ataxia was verified as a condition when cadaver examinations of individuals who suffered from idiopathic ataxia (ataxia without a known cause) revealed IgA deposits at the base of the cerebellum (basically the motor control part of your brain).
More often than not, however, people with gluten ataxia will test positive for celiac disease.
I hope this guide to non-celiac gluten intolerance conditions helps you isolate and identify the different possible forms of gluten sensitivity that may occur even when you test negative for celiac disease.
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