Living With Celiac Disease

by Laura Weaver

I have the chronic illness diagnosed as Celiac Disease. It is a digestive disorder in which the body no longer produces the enzymes needed to break down glutens in foods.

Glutens are the protein parts of grains which are found in almost EVERYTHING that is processed: wheat, oats, barley, etc. It is also disguised in processed foods and listed on label ingredients as "modified food starch", "hydrolyzed protein", or "maltodextrin". Not only is Celiac Disease uncomfortable and unpleasant, but a sudden outbreak causes symptoms which are uncontrollable, often resulting in dangerous complications. Symptoms last for days, making the patient weak, dehydrated, and disoriented. Muscle cramps develop in the extremities and heart palpitations may occur. The body rejects all food and water, holding nothing.  I.V. fluids are often required to replenish those which are lost. As symptoms start to subside after several days, easily digested foods can slowly be reintroduced. It can take more than a week to be able to eat a normal gluten-free diet again.

Glutens are found in wheat, barley, and rye. There are also glutens in oats, quinoa, and buckwheat, but some people who have been diagnosed with Celiac Disease are able to digest these. Glutens are also abundant in most processed foods, so understanding what you read in the labels is essential to staying healthy. It is a great help to take a class with a dietician to learn about this. Dieticians can tell you terms like "modified food starch" probably contains gluten, but just "starch" does not.

Celiac Disease symptoms can be controlled by following a strict diet, eliminating all glutens. This is often more difficult to do than it seems. In addition to consulting a dietician, changes in the preparation of foods is essential. Watching the diet at home is relatively easy because it is controllable, but eating in restaurants or even at other peoples' homes can present problems. Even if the foods served are considered gluten-free, the preparation involved may be questionable. Cross-contamination, although not done on purpose, is often as innocent as using the same utensil to stir or serve foods which contain glutens and those that are considered gluten-free. Think of minute crumbs being transferred to safe foods via these utensils. Also, if the kitchen/environment is not gluten-free, there may be problems, as well: flour particles floating in the air may land on gluten-free foods.

Shopping for gluten-free foods not only involves reading ingredient lists, but the process of actually finding such foods. Health food stores are the best place to find them. Sometimes grocery stores have a limited supply of a few gluten-free items. Occasionally, requesting specific foods when speaking with the store manager gets results, but unfortunately, gluten-free foods are very expensive, so are not ordered on a regular basis. Ordering directly from the gluten-free company is a possibility, but ordering a case or more at a time is required by the company and shipping costs more than the item itself; i.e. the $6.99 loaf of rice bread becomes $15.00 per loaf. Then, there is also the problem of storing large supplies. Eating out is a luxury we often forgo because of the risk involved. It is difficult to control what actually happens behind the closed doors of the kitchen.

Eating with friends at our numerous Pot Luck diners, however, is another matter. We cherish our time with our friends and it always seems to involve eating. In order to stay healthy, I have to be diligent in preparing and taking my own personal foods to such functions. I have learned to be first in line in serving myself so no other foods are accidentally dropped into what I can eat or so that no other utensils are used in my "safe" food. Luckily our friends understand and accept this situation. In fact, when it's time for us to eat, they simply say "Laura, let's get started".

What a relief it is to have our friends be so understanding and supportive!

Laura Weaver suggests the gift of a beautiful fruit basket for your loved ones who have Celiac Disease.