Gluten-What Is The Deal?

by Jennifer Boudreau on May 13, 2013

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GlutenThis month is Celiac Awareness Month, so I thought I would touch on a topic that many of us are hearing about these days: gluten. By now, I am sure you know someone who has either made the choice to remove gluten from their diet, or was told by their doctor that they need to. We had to remove gluten from our daughter’s diet at age 2, but her symptoms were not typical. I want to share with you our journey and some additional information in case you may find yourself in a similar situation.

What is gluten? Gluten is a protein composite found in foods processed from wheat and related grain species, including barley and rye. Gluten is found in breads, pastas, baked goods and many processed foods. In summary, gluten is almost everywhere.

You may be wondering what the difference is between Celiac Disease and Non-Celiac Gluten Sensitivity (NCGS). According to the National Foundation of Celiac Awareness, “Celiac disease is an autoimmune digestive disease that damages the villi of the small intestine and interferes with absorption of nutrients from food.” NCGS, which is what our daughter has, classifies “those individuals who cannot tolerate gluten and experience symptoms similar to those with celiac disease, but yet who lack the same antibodies and intestinal damage as seen in celiac disease.” There is still a lot of research to be done when it comes to NCGS, but one of the reasons it is hard to detect is because it does not create an autoimmune response like Celiac Disease, nor does it create an allergic reaction. No wonder why this condition is driving parents and their pediatricians crazy.

Let’s talk about symptoms. Some common symptoms include diarrhea, bloating, cramping, abdominal pain and constipation. Behavioral symptoms can include “foggy mind,” depression and ADHD-like behavior. Other symptoms include anemia, joint pain, osteoporosis, and leg numbness. The very first symptom our daughter presented was that she could not drink dairy milk without getting diarrhea. This was odd because she handled milk based formula just fine as an infant, but the moment we switched her to whole milk the diarrhea began. Doctors assumed she was lactose intolerant, so we switched to lactose free milk. The diarrhea continued, so this was not a lactose issue. She now drinks almond milk and tolerates it just fine.

In addition to the diarrhea, her belly was always very bloated. She would get TERRIBLE diaper rashes and frequent, unexplained hives. The hives would appear after she ate or when she got cold. Then one day I noticed something strange on her tooth. At age 2, she had a cavity. Keep in mind our kids drink juice about once a month at most. They rarely have gummy snacks and do not take gummy vitamins. They would eat candy occasionally, but not much. Not to mention, we are diligent about brushing their teeth. I was floored! Come to find out, NCGS/Celiac Disease can cause a breakdown of tooth enamel. Who knew?

My daughter’s pediatrician always pointed the finger at gluten, but the Celiac Panel blood test came back negative. We then took her to a pediatric allergist who ran a series of allergy tests, but they too came back negative. This was good news, but we still needed answers. Her pediatrician then sent us to a pediatric GI doctor, who told us that everything looked good. Again this was great news, but we were going on a year of hives and other symptoms, and we still needed answers!

We decided to take our daughter to a Doctor of Functional Medicine. She ran a series of blood tests through Cyrex Laboratories. Cyrex is a cutting edge laboratory that offers four profiles (arrays) of testing. Testing for NCGS used to result in a lot of false negatives, but Cyrex has helped improve the accuracy of testing. Our daughter’s results came back showing a glaring issue with gluten. The beauty of this test is it also identifies whether or not an individual has issues with any cross-reactive foods. Cross-reactive foods are foods with a similar protein structure as gluten, resulting in the possibility of your body reacting to them as if they were gluten. Coffee, casein and cow’s milk are a few cross-reactive foods that our daughter needs to avoid.

If you have ever wondered if gluten is an issue for you, checkout this article relating to Non-Celiac Gluten Intolerance symptoms.  The article not only provides a list of symptoms, but guides you on which test you should consider getting.  A very interesting fact that our doctor mentioned, and this article confirms is that gluten intolerance and Celiac Disease are genetic. In addition, researchers are beginning to find a link between auto-immune disorders and NCGS/Celiac Disease. If you have a family history of thyroid disorder, diabetes, multiple sclerosis or other autoimmune disorders, you can take a quick saliva test. Although not as extensive as the blood test, the saliva test can still provide valuable information. The test is available to the public and you can take the results to your doctor for further diagnosis and treatment. You can purchase the Non-Celiac Gluten Sensitivity test  here. With the help of your doctor, you can have a simple blood test done to confirm or rule out Celiac Disease. If the test confirms that you do not have the disease, you may have to consider these alternate options.

The great news for us is that our daughter is no longer suffering, because we did not follow the original medical advice and “just keep giving her Benadryl” to treat the symptoms. We chose to keep digging until we found the answer that explained the cause of her symptoms. NCGS and Celiac Disease goes undetected fairly frequently because the symptoms are non-specific. The symptoms encountered can be those found with many other illnesses. It can be a frustrating journey, but if you have symptoms and cannot seem to find an answer, it is certainly worth pushing forward until you get one. We were told by our daughter’s Functional Medicine Doctor if NCGS goes untreated, it can progress in to Celiac Disease, so it is best to figure it out and get ahead of it!

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