In our previous article (Understanding & Defining Celiac Disease), we discussed and defined celiac disease. In this piece we will discuss other forms of gluten intolerance that do not meet the definition of celiac disease.Celiac Disease is a common problem, but gluten intolerance is far more common than celiac disease. There is a great deal of debate about how to define gluten intolerance and the relevance of forms of gluten intolerance that are not celiac disease. In this article I hope to clarify some of these issues and acknowledge the validity of all forms of gluten intolerance.
What do we mean by non-celiac forms of gluten intolerance?
As a reminder, gluten is a protein found in wheat, rye, spelt, kamut, barley and other grains. Many people find that they cannot tolerate gluten, but they do not test positive on any of the tests used to diagnose celiac disease. These tests include the biopsy of the small intestine, and the endomysial, reticulin, and tissue transglutaminase antibody tests. This is a common occurrence and one that I frequently see in my office.
Notice that I did not say that they do not test positive for gluten intolerance. In fact, most of these people do have test results that indicate that they are gluten intolerant, even though they do not test positive for celiac disease.
How do you test for other forms of gluten intolerance?
One test that I haven’t mentioned yet is the gliadin antibody test. This test is commonly run and is often positive when the others are negative. It is then usually ignored or the physician states that it is a false positive. It makes you wonder why it was run at all. But it is only a false positive if you want it to predict celiac disease. Gliadin antibodies are very poor predictors of celiac disease. However, they are positive for a reason. They indicate that the immune system has formed a reaction against gliadin, which is a fraction of gluten.
This is very important. Just because someone has an immune reaction to gluten does not mean that they will get celiac disease. Remember from the previous article, celiac disease is really another phrase for villous atrophy. So we can rewrite that sentence to say, “Just because someone has an immune reaction to gluten does not mean that they will get villous atrophy.” Villous atrophy is a result of the immune reaction to gluten. But it is only one possible result. It is a reaction to gluten that results in an autoimmune reaction to the lining of the digestive tract which results in villous atrophy.
I hope I didn’t get too wordy there. You may have to read that twice. What I really want to say is that celiac disease is just one type of gluten intolerance.
Are there other tests for gluten intolerance?
In my office I run a full panel of IgE and IgG antibodies for about 100 different foods and food components. I regularly see elevated antibodies to gluten, gliadin, wheat, barley, rye and spelt. These people usually do not have celiac disease, which I also rule-out. A positive test for any of these foods indicates that they have an immune reaction to those foods.
These patients invariably begin to feel better once they have eliminated these foods from their diet. They may have digestive symptoms such as constipation, diarrhea, IBS, gas, bloating, or heartburn, or they may have any number of other symptoms, such as fatigue, headaches, arthritis, chronic sinusitis, eczema, etc.
What if you haven’t run any blood tests, but know that you can’t eat gluten?
There are many people who discover through trial and error that eliminating gluten from their diet helps them to feel much better. These people often have not undergone any testing. And really, what is the point? You don’t need someone else to tell you that you feel better.
I always honor my patients’ right to know that they can’t eat gluten. Who am I to tell them otherwise? There usually isn’t any point in testing them, since any test for celiac disease or gluten intolerance will typically be negative once a person has stopped eating gluten for a while. And asking someone to eat gluten for at least a month so that I can verify their gluten intolerance seems illogical when you consider how ill that usually will make them feel.
The common treatment for everyone.
Whether you have celiac disease, are gluten intolerant, or just think that everyone on earth should avoid gluten (I don’t think this), then you are left with the same treatment plan, avoid gluten. Some people believe that celiac disease is a more severe form of gluten intolerance, but the evidence does not necessarily support this. Many celiacs are basically asymptomatic. And many non-celiac gluten intolerant individuals are very ill.
“Gluten intolerance” covers us all.
In the end, the words “gluten intolerance” cover anyone who can’t eat gluten, regardless of the reason.
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Image thanks to stonyfield.com
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