Celiac Life

In late July of 2011, I was diagnosed with Celiac disease.  I was 9 years old, and I felt like my world was coming to an end.  No, not because Celiac disease is some kind of terminal illness, or some excruciating disease that would require millions of dollars in medical procedures.  It meant that I would never be able to eat gluten again.  No more bread for my sandwiches, no more pancakes or waffles for breakfast, hardly even any cereal!  No more pizza or pasta, no cake or cookies, not to mention all of the wonderful glutenous foods that I had never tried and would never be able to even taste.

Gluten free symbol

What really is Celiac disease?

Celiac disease is an autoimmune genetic disease that renders the villi, the cells and structures that absorb nutrients from the small intestine, unable to take in any nutrients.  This happens because when someone with Celiac disease consumes gluten, a protein that is commonly found in wheat, barley, and rye, their body produces an immune reaction to the small intestine that damages the villi.

Image of vili in small intestine in person with and without Celiac Disease

The immediate causes for this are presently still unknown. However, Celiac disease does have a genetic connection.  For example, in my immediate family I have it, and so do my brother and my mother, so my mother passed on the gene for it to both of us.  If one has certain variants of HLA-DQA1 or HLA-DQB1, one is more predisposed to the condition.  Despite being a genetic disease, someone with the previously mentioned variations may not experience it until later in their life.  Often one will begin experiencing symptoms of Celiac disease after a stress to the body such as surgery or pregnancy, though they can begin as an infant. 

What are some symptoms of Celiac disease?

There are dozens upon dozens of symptoms for Celiac disease, and everyone experiences different symptoms.  One may not even experience any symptoms that seem related to digestion at all.  Some symptoms in adults are - fatigue, bone or joint pain, osteoporosis or osteopenia, seizures and migraines.  Children are more likely to have digestion related symptoms, some being - abdominal pain or bloating, diarrhea, vomiting, delayed growth and puberty, short stature, irritability and ADHD.

With such a variety of symptoms that are different for everyone, it seems hard to figure out whether a person has Celiac disease, or something completely unrelated.  Actually it is very easy to test for Celiac disease, there are a few simple screenings or tests one could take to determine whether they have it or not.  One is a blood test screening, which is available for anyone over 3 years old.  For this, one is injected with tissue transglutaminase IgA antibody as well as the IgA antibody to help the test run smoothly.  In 98% of patients who have Celiac disease the test will come out positive, though there is a chance of a false positive in patients with certain other conditions.  This test come out negative in 95% of patients who do not have Celiac disease.  For further testing, one can take and IgA Endomysial Antibody test, which has a specificity if 100% but is not as sensitive, and 5-10% of people with Celiac Disease do not have a positive test from this, and it also requires primate esophagus or human umbilical cord, so it is reserved only for very hard to diagnose patients.  One can also take a total serum IgA test, which gets for an IgA deficiency, something that is common in people with Celiac Disease, if one has an IgA deficiency, one can take a Deaminated Gleason Peptide test.  Another, and more practical test one can take an endoscopy, which is what I took.  An endoscopy is a test in which a very small camera is inserted into your small intestines to see if the villi are healthy, they also take a small piece to do a biopsy on, to further confirm whether you have Celiac Disease.

What happens if you are diagnosed with Celiac Disease?

While being diagnosed with Celiac Disease is not the end of the world, it certainly may feel like it.  No more pizza or bagels, no cookies or cakes, no bread or any other bread products, and not to mention all those food that seem perfectly fine but secretly have gluten in them... With all those foods that you can no longer eat, it seems like there is very little that you can eat.  Fortunately there are now many different brands that offer a variety of gluten free foods that don't taste half bad.  There are a few different bread brands, a couple cracker brands, a variety of cookies, baking mixes, and flours.  Now there are even some restaurants that offer gluten free food, and label it as such, what an exciting prospect!  

Gluten free aisle in a store

So while your new life may feel very strange at first, it's really not as big of a difference as you fear.  In my eight years of being gluten free, I have seen the number of products practically double, and while I do miss being able to walk into a restaurant and ordering whatever I want without having to think twice about what the ingredients might be, there is enough variety and actual good tasting gluten free food, that it no longer feels like such a burden to my life.

-Hannah R.