The emotional side of Celiac Disease

Ten months ago my life was turned upside down. After years of stomach problems, 8 months of severe weight loss, bouts of vomiting and diarrhea and the inability to properly nurse my daughter, I was diagnosed with Celiac Disease. Celiac Disease is an autoimmune disorder whereby the body views gluten as poison. As a result, when gluten (i.e. wheat, barley, rye, etc) is ingested the small intestine shuts down and prevents the body from absorbing the nutrients it requires from the food to survive. In severe cases like mine, when you are unaware that you have celiac disease and continue to eat gluten, your body begins to go into starvation mode.

The only cure for Celiac disease is to remain on a gluten free diet. This means you need to avoid ingesting gluten, anything that comes in contact with gluten, and the knowledge to know how to read labels to be able to find where sources of gluten may be hiding.

Here are two amazing charts I found on The Gluten Free Chef.

This first chart shows foods that are commonly associated with gluten.

This second chart shows foods that are not commonly thought to contain gluten. When I first began reading labels, I was shocked to discover this list.

*There are gluten free oats available, HOWEVER some people with celiac disease cannot tolerate GLUTEN FREE oats. It is one of those iffy items.

For 10 months now, I can officially say I have been GLUTEN FREE. There has been the odd time that I have slipped up (i.e. eating the icing of a gluten cupcake!) and there are many, many times that I have eaten something I didn’t know that contained gluten. For example, my husband whipped up a delicious meatloaf for dinner. He carefully made sure that he used gluten free flour, avoided breadcrumbs and made it safe for me to eat. I ate it for dinner and 10 minutes later my stomach started cramping, I began to bloat and feel awful.  The feeling of pain and discomfort lasted for several hours.  When the pain subsided and I was able to thing again, I reviewed my day and try to determine what caused my reaction. Sometimes, my reactions to gluten can be immediate and other times it can occur hours later. My meals that day consisted of foods that I ate on a normal day; the only unique food was the meatloaf.  After thorough investigation, I discovered that my husband used Worchester sauce (which we had used many, many times in the past PRE DIAGONSIS!), which contains malt vinegar! GRRR! It just goes to show you that it’s not easy to eat gluten free.

I find that I have been able to adapt to the physical requirements of celiac disease but I struggle with the emotional side. Imagine going to a restaurant for your anniversary and not being able to order anything on the menu but a salad and knowing that you are probably going to have a reaction due to some sort of cross contamination anyways. Imagine going to a birthday party and not being able to indulge in the delicious ice cream cake being served around you. Or imagine going to a family event and having to ask about each dish on the table to ensure that it’s safe to eat. It can be embarrassing, heartbreaking and challenging. Celiac disease is a ‘silent’ disease. When you are exposed to gluten (whether through contamination or ingesting the actual source), your reaction is not immediate nor does it show on the outside. Your face doesn’t swell, you don’t get hives or you don’t have trouble breathing like it does with peanut allergies, instead you have severe cramps, can’t hold down your meal and begin to starve your body of the nutrients it requires.  I’ve had people say, “Well its not like your going to die if you eat it!” This is the part that I’m having trouble dealing with. I can give up the cookies and bread, I can buy my own toaster and use my own utensils when cooking, but its hard dealing with the emotional stigmatism that just because I won’t die immediately or because you can’t see my reactions, doesn’t mean that it doesn’t affect my life in a large way.

I hope by my posts about my life and the affects that celiac disease has on my life educate people to what it is all about and how it physically and emotional affects a person. For many years, while growing up my mom had a lot of  ‘allergies’, one of them being a gluten sensitivity. Until, I was thrust in the same situation, I never really understood the impact on her life.  I feel horrible at all she missed out and how little anyone cared.  Although, we are blessed with many more gluten free options available today, this silent disease needs to be heard!

Celiac Disease is not the only “silent” disease out there who’s symptoms are not as dramatic as other diseases. Do you suffer from a ‘silent’ disease?