Think You’re Gluten Sensitive? Better Get a Diagnosis!

A new study shows that almost ¾ of people who say they are gluten sensitive have not had a proper diagnosis – and most have diagnosed themselves. But by self-diagnosing they may be missing an opportunity to find out first if they have the much more serious gluten problem called celiac disease. Gluten is the protein found in wheat and some other grains like barley and rye. If you’re gluten sensitive but don’t have celiac disease, eating gluten is not going to have an adverse effect on your intestines – you just don’t feel so good.  But in celiac disease the intestine responds to gluten by turning against itself in an autoimmune response, destroying the folds of the intestines and increasing your chances of getting osteoporosis, thyroid disease, type 1 diabetes, arthritis, and having a miscarriage. So knowing if you have celiac can help you properly treat it and to also be on the lookout for any serious complications. Celiac disease is genetic. So know if you are diagnosed, you can help you warn relatives to get tested. 

About 1 in 133 people (0.75%) have celiac disease but many of those are undiagnosed. The good news is that the damage to the intestines caused by celiac is reversible if people eliminate gluten from their diets. The symptoms vary from person to person and include other symptoms besides the telltale bloating and diarrhea:

Symptoms of celiac disease:

• Digestive problems (abdominal bloating, pain, gas, diarrhea, pale stools, and weight loss) 
• Severe skin rash 
• Low iron in the blood 
• Muscle cramps & joint pain 
• Growth problems and failure to thrive in children 
• Seizures
• Tingling sensation in the legs 
• Mouth Sores 
• Missed menstrual periods

Now, you can probably imagine that many other disorders can cause these symptoms as well – which is why an accurate diagnosis is so important. You need to get treated properly for the disease you actually have. But if you self-diagnose yourself with gluten sensitivity and cut out grains, it makes it hard to diagnose celiac because the blood markers go away. Identifying these blood markers is the first step in diagnosing celiac disease. The second step is a biopsy of the intestines. This new study showed that 62% of the people who said they had gluten sensitivity had not been properly diagnosed - meaning they had not had celiac disease ruled out first among other things. An additional 24% still had symptoms despite getting rid of gluten in their diets. Most of the respondents were self-diagnosed or had been diagnosed by an alternative medicine practitioner. 

If you don’t have celiac disease but are still having symptoms that you think are linked to gluten, getting a diagnosis of gluten sensitivity is tricky because there are no tests for it and your symptoms could be a sign of many other disorders. If you think you have a problem, you need to see a doctor who specializes in digestive disorders – a gastroenterologist. Right now, the diagnosis is one of elimination of other possibilities.  The other problem with accurately diagnosing gluten sensitivity is that there is a strong link between your brain and your gut. If you’ve ever been nervous about a presentation or a performance and had to run to the bathroom, you’ve experienced this first hand. There are many studies that show a strong placebo effect with gut symptoms. So, you may eliminate gluten and your symptoms go away – but it could be because you were expecting them to go away. Of course, it could be because of the gluten, some other part of the wheat, or simply that you’re eating fewer calories. Researchers are working on developing a test for gluten sensitivity but until then, diagnosis will remain a bit of a guessing game.
 

Many people ask me if there are benefits to eliminating gluten from your diet if you don’t have celiac disease or gluten sensitivity. The answer is probably not – despite all of the popular books you may see about the dangers of gluten. The claims against gluten are largely unfounded and despite the gluten-haters claims, there are no good studies that show that gluten or grains are to blame for the wide variety of diseases they claim.

Beth Kitchin, PhD, RDN
Assistant Professor, Nutrition Sciences
University of Alabama at Birmingham

Source: Biesiekierski JR, Newnham ED, Shepherd SJ, Muir JG, Gibson PR. 2014. Characterization of adults with a self-diagnosis of nonceliac gluten sensitivity.  Nutrition in Clinical Practice; April 16, 2014.