Sunday, November 4, 2012

Celiac Disease

So while everyone that meets me personally learns quickly that I have Celiac Disease, I thought I would share it with all of my fans too. I was diagnosed in February of 2004. I had been in and out of the hospital, sicker than I can ever remember being. At one point my mom said a doctor had told her, "Her (as in me) body is shutting down and she is dying, but we can't figure out why." Being so long ago I had never even heard of Celiac Disease. I didn't know such a thing existed. At 5'8" I weighed 89 pounds at my thinnest and sickest. My dear sister used to say I was "concentration camp victim thin". It wasn't until they knocked me out and biopsied all of my insides that they discovered the truth behind my mysterious illness.

Celiac Disease is an autoimmune disorder. Every time I eat anything with GLUTEN (wheat, rye, barley, and most oats) my body sees it as a foreign object and enemy. In retaliation my body wages war on the gluten inside my small intestine. Problem # 1: my body can't differentiate between the gluten and itself so in the process of this war my small intestine also gets attacked and damaged. Problem #2: Being an organ attached to me this causes severe pain and complications. Since the small intestine is where most absorption of nutrients occurs the person with this disorder cannot receive adequate nutrition even if they eat a balanced diet.  

Symptoms I suffered from were constipation, severe abdominal pain and bloating, body aches, malnutrition, brittle bones, brittle hair and nails, no enamel on my teeth, recurrent infections like RSV, etc.

To correct this disorder a simple gluten-free diet is prescribed. I can tell you that within a week I was feeling better! Sure it takes months to years to correct so much damage to the small intestine, but removing the problem made a serious impact on my overall health and feeling of well-being.

We have since discovered that this genetically passed on disease has been in fact bestowed so graciously on our two sons. Symptoms they suffer from when exposed to gluten include severe abdominal pain and bloating, severe diarrhea, skin rash, wearing down of the enamel on teeth, lack of appetite, headache, grumpiness, and restlessness.

It is important to know that because it is an autoimmune disease it means your immune system goes into full on war mode and more than just the intestines are affected. Our oldest son has permanent scarring on his legs from the rash he developed before we turned him gluten free. While the rash cleared up completely, the scars are a constant reminder of his gluten sensitivity. He also has no enamel on his teeth and has had several thousand dollars worth of dental work to try to correct the problems associated with no enamel.

Also, everyone with Celiac Disease shows different symptoms. Some people don't even know damage to their intestine is occurring while others, like my sons and I, get seriously ill when exposed to gluten. If you are concerned you may have this disorder I strongly suggest you speak with you Primary Health Care Provider (PCP) before going gluten free. If you remove the problem and try to get tested for the disease the results will be inaccurate because the immune system will no longer be fighting gluten. While this is of course the overall goal, it is important to remember there could be other factors at work and by changing your diet you might miss the chance to truly find out what your body is fighting. Something more serious could be going on and only your PCP can diagnose you with Celiac Disease.

Personally, I am grateful for my diagnosis. While eating gluten free sucks sometimes, I don't have to take medications to treat my condition. Without gluten in my diet I am a healthy individual and can lead a normal life. If I had to choose a problem to have, this would be it. For more information on this disease you can visit and I strongly advise you to seek an audience with your PCP.

1 comment:

  1. Julee, thanks for educating me about this disease.

    I hope you'll continue to heal and I'm wishing you all the best with your book.