The Diva Interviewed about Celiac Disease

A college student recently interviewed me. Here’s how it went down…

1. What symptoms led you to the discovery that you had Celiac?

Five years ago, I was driving down the road when all of sudden, I thought I was having a heart attack, chest pain beyond my comprehension. I pulled off the side of the road and lay in the grass, grasping for breathe…but upon arriving at the hospital, the docs could find nothing wrong with my heart and pumped me full of pain meds. I was in shock and terrified. The chest pain “attacks” continued and eventually became a constant sharp pressure. It became painful to laugh, be hugged, talk, breathe, or even wear a bra. That’s right, people, I became the queen of tank tops under a large sweatshirt.;) It took 3 years to get a chest pain diagnoses of Costochondritis (an inflammation of the cartilage in between the ribs). However, little did we know, it was not costochondritis at all, but a result of Celiac Disease. After 3 years of struggling with chest pain, my health began to deteriorate further: numb hands, an oddly broken foot just from walking (the bone had to be removed), diarrhea -gross!, headaches, heart palps, severe ear infections, very pale skin, thyroid problems, extreme thirst, back pain, brain fog, numbness, tingling, severe mood swings, muscle twitching, not able to get enough sleep, psoriasis, and the list goes on…

When we found out...

2. What was your initial reaction once you discovered you diagnosis? Many people respond in panic once they discover that their entire diet and lifestyle are about to change.
I cried with relief and then celebrated!! We took pictures, lol. I was so excited to know what was wrong with my body. I saw it as a blessing. There are too many diseases that cannot be treated with a change in diet, Celiac disease can…this is a gift.

3. If someone feels like they have the symptoms of gluten intolerance or Celiac’s disease, what you suggest they do first?
If you suspect celiac disease, in my humble non-medical opinion, I suggest talking to your doctor and getting the celiac blood panel and the gene testing (you can also do gene yourself at done asap. Then you and your doctor can go from there and decide if a scope of the small intestines is best for your situation. If the blood panel, gene test, and biopsy all come back negative, I’d talk with your doctor and possibly look into other forms of gluten sensitivity testing. You may not have Celiac Disease, but could be suffering from some level of gluten intolerance or allergy.

4. What is the most important thing to know when first going gluten free?
Make your life a zero tolerance policy when it comes to gluten. No cheating. I was so sick…so it’s natural that I don’t want anything to do with gluten. And I understand that others have had a different road to diagnoses, so if you want to cheat, take the time to really educate yourself about Celiac Diease. This way, you’ll know what you’re doing to your body by eating gluten and can take full responsibility for the consequences, good or bad. If that doesn’t work, lol, think of drinking gasoline…whether you drink a little or a lot, it’s still very dangerous and starts the auto-immune response in your body. Gluten is gasoline to Celiac Disease patients.

5. Many people feel like a freak-of-nature when they’re in a group of friends munching on stacks of pizza. Did you feel awkward at first when going out to eat with gluten-eating friends?

Truthfully, I haven’t eaten out for almost 13 months. I take my own food with me when/if dining with friends. Getting gluttened via cross-contamination right now isn’t worth it to me. I also have many consequential problems stemming from Celiac Disease, so I have many food restrictions and problems in addition to avoiding gluten right now. But to those who are feeling like the odd man out- make your own GF pizza or food and have your friends over! Don’t buy into this “victim” mentality, it’s toxic to your growth as a person. Be creative, suggest a place that you can eat at. I know it’s hard being different, I get that, I live that. But instead, ask your buds to meet you at a coffee shop or alternative places. Then, every once in a while, go eat with them and take your own pizza. Or don’t. Take control of your life! Join a GF support group or start one. You can totally do this. Don’t allow external situations to steal your joy.

6. On your busy days, what are a few meals or snacks that you take on the go?
Larabars, peanut butter & carrots, apples, and of course, chocolate. ;)

7. Often when I tell my fellow colleagues that I’m gluten intolerant, I simply get a reply such as, “Oh that really sucks, I would hate my life if I had that problem.” — How would you retaliate to such a response?
When people says things that are painful to hear, they are often responding to us based on their life experiences and a lack of understanding. So I personally would say, “being gluten free isn’t always easy, but being sick is what sucks.” And then I’d open up the dialogue about living gluten free. Take it as an opportunity to advocate for the gluten free community. Our goal should stay on the prize of “health” for ourselves and sharing what our symptoms were so that others can get diagnosed. Don’t waste energy getting upset about people who don’t understand. Because one day…that person or someone they love will have some odd symptoms and you will have planted the seed as they think to themselves…”I remember this chick who couldn’t eat gluten…I wonder if that’s the problem…”

My supportive family...

8. What are the important things a gluten intolerant person should try to explain to loved ones?
First, have a sit down with them. Explain why you can’t have gluten and how your life is going to change, including the challenges and health benefits. Then share how that will affect your relationship to them and how you need their support. Tell them specifically how they can support you. Most family members say they don’t know exactly how to help a GF person, so tell them in specifics and what you need from them. Last, ask them what questions or concerns they have. Be patient and sensitive with them, this is new to them too. For me, I asked that my family treat my GF meals that I take everywhere like it’s no big deal. And they do, they rock, they never give me a hard time or look twice at what I’m eating…unless they want a taste, which I love. ;)

9. Your television show seems to cover every aspect of gluten free living, what is your number one goal of being ” The Celiac Diva”?
My first goal is to expose all the faces of Celiac Disease. My heart aches at how many people are walking around undiagnosed, it’s time for that to change. My second goal is to get “The Celiac Diva Show” nationally syndicated. I want Celiac Disease symptoms, GF food choices, doctors opinions, GF education and so much more to come into homes everywhere across America…with a little sass, of course. ;)