What is Celiac Disease?

Do you ever get blank stares from people when you say you have celiac disease? When having dinner with people, do they sometimes tell you just to eat something with gluten because it tastes good and it won't matter just this once? Or have some people asked if it means you just can't have bread? Or have people asked you if celiac means you can't have dairy?

What happens to the body when you have celiac disease?

Celiac is an autoimmune disease. When a person with celiac disease eats gluten, their body reacts by seeing gluten as a "poison" and starts an immune response that attacks the small intestine. These types of attacks damage the villi in the intestine that absorb nutrients. When this happens, the body can't absorb nutrients. For many with celiac, their body responds immediately when they ingest gluten with symptoms like severe stomachaches, vomiting, diarrhea and severe headaches. Some people don't have an immediate physical reaction but the intestinal damage is still happening on the inside. In small children, the malabsorption of nutrients over time can affect their growth and development. In older kids and adults, long term symptoms can include the development of other autoimmune diseases, joint pain, injury to the nervous system, loss of bone density, anemia and certain kinds of cancers.

How is celiac diagnosed?

In my case, when I was 7 years old, I had been having really bad stomach aches and I also had this weird rash on my elbows. When I went to the doctor, he first gave me a cream for my elbows but that did nothing. When we went back and I still had these awful stomachaches, I had a blood test. My blood test showed a very high number of antibodies, which indicated I had celiac. I then had a biopsy to confirm the diagnosis. Because I was so young, I was put under anesthesia and the doctor went in and took samples of tissue from my intestines. The biopsy confirmed I had celiac disease.

Many people are diagnosed after having gastrointestinal symptoms for a long time and in young children, it's from a failure to thrive. But some people don't have any digestive problems and they suffer with lots of other symptoms (like those described above) before they are finally diagnosed with celiac.

How do you treat celiac?

AVOID GLUTEN. Gluten is a protein found in the following grains:

wheat

rye

barley

bulgar

durum

malt

semolina

spelt

triticale

Maintaining a very strict gluten free diet reduces inflammation in your small intestine which makes you feel better and start healing. The gluten free diet is a lifelong one. This means constantly reading labels. Reading labels becomes a part of everyday life because gluten can be hidden in foods. Be on the lookout for these kinds of things and read the labels and if you still have questions, call the company or look it further information online.

Modified food starch, preservatives, malt and food stabilizers

Lipstick products

Toothpaste and mouthwash

Part of the envelope you lick to make it stick

Prescription and over-the-counter medications

Vitamin and herbal supplements

Children's modeling dough, such as Play-Doh

In addition to avoiding gluten, many celiacs also need to take vitamin supplements. This is based on individual need so be sure to talk about this with your doctor before and after having your blood checked.

How much gluten can I eat before it does damage?

This is the real question and needs to be taken seriously - most researchers agree people with celiac disease can tolerate up to 20 ppm (parts per million) of gluten. What does that mean? It's the equivalent of a very small crumb. That's a really really small amount so that's why ingredients AND cross contamination are so important -- when GF food comes in contact with gluten food or utensils, it takes a little gluten to affect someone with celiac. When you see a GF label on foods in the grocery store, this means it meets the FDA requirement that the product has been tested and is under 20 ppm. Make sure you look for that GF label. Many manufacturers are testing at even lower levels so they can be accessible to people who are even more sensitive.

Follow up care after diagnosis

I get my blood tested every 6 months to make sure my antibody levels are low. Your blood test can reveal if you have been eating gluten or things with cross contamination because certain levels rise. I just think it's a good thing to make sure I'm on track and not making any even unintentional mistakes. The long term consequences of not taking the proper precautions are too serious. Follow a strict gluten free diet ALL THE TIME. No cheat days and no "it won't matter this one time" incidents. Please be safe and take good care of yourself.