ValerieThe Voices of Celiac Disease

“This is a very real and serious autoimmune disease. If you have a family member that has been diagnosed with celiac disease, know that it does run in families. Get tested.”

A portrait of Valerie.

Describe your life prior to diagnosis:

The earliest I can recall gluten making me extremely ill was when I was given Cream of Wheat before school in first and second grade. I would vomit so violently that I would pull all the blood vessels around my mouth. 

How did you come to know (or suspect) that you have celiac disease?

My mother was diagnosed with celiac disease in her 50s through an endoscopy. I was also experiencing stomach discomfort and flu-like symptoms every single day at the time, in addition to burning, popping, oozing blisters on my face, chin, thighs and back side. I currently have permanent scarring from them.

How long did it take for you to get diagnosed since your first symptoms and what (if any) challenges did you face along the way?

It took me until the skin condition developed along with intestinal and stomach discomfort to get a doctor’s care and pursue a diagnosis.

If you were diagnosed, who made the diagnosis?

In my late 40s, I had an endoscopy from a doctor confirming the celiac disease diagnosis. My intestinal villi were flat and my case was very bad.

Do you believe anything could have sped up your diagnosis? If so, please explain:

I don’t feel I had enough information on the disease as my mother downplayed the disease and how it affected her. My mother didn’t know that it affected everyone differently. I feel that if my mother provided me with information about the seriousness of celiac disease and difficulties I would be facing from it in the future, I would have pursued a diagnosis earlier.

I have since provided my two daughters with enough information on how serious and difficult this disease is to live with on a daily basis. I have made my daughters aware of symptoms to look out for. My older daughter was given a blood test to check for celiac disease and it came back negative.

Describe your experience with living with celiac disease:

I feel the biggest challenge was self-care; taking greater care of myself and making my family aware of how easily one tiny crumb of gluten on a pan, counter or table can make me so sick.

I read labels constantly. I have regular “go-to” gluten-free foods. I have specific pans that I do not allow any gluten to touch in order to keep me safe. I no longer have flour or regular bread and bread crumbs in the house. I bring my own food to family gatherings including Thanksgiving.

It is a struggle every day, right down to making sure I wipe down the table that I sit at during my breaks at work. I am very careful when I go out to eat, but still I have been glutened many times at restaurants that have very strict gluten-free menus. The last time I was glutened I had to call out of work for about five days and I was sick in bed like I had the flu. 

Is there anything else you’d like to add to your story?

This is a very real and serious autoimmune disease. If you have a family member that has been diagnosed with celiac disease, know that it does run in families. Make your/their healthcare provider aware of symptoms. Please pay very close attention to what you are feeding your children. Read labels. There are many gluten-free options, so please stay hopeful and positive.