Celiac Disease Awareness

In honor of Celiac Disease Awareness Month, I thought it only fitting to talk about the groups/organizations that exist out there.

Since 2006, I have been an active member in our local group, the Gluten Intolerance Group (GIG) of Greater Dallas, and have loved seeing people connect with one another at each meeting and event.  So often we hear that when people come to meetings they expect to see ‘weird-looking’ folks and are relieved to discover they are normal people like themselves.  For some strange reason we think those of us with this ‘aliment’ will somehow look like aliens different.  Nope, sorry to disappoint.  You won’t be able to pick us out from a police lineup anytime soon.

I felt it was my calling to reach out to people and support them as they begin this new journey of their lives, because I have pretty much seen it all.  When I was diagnosed in 1982, my medical records stated that ‘Since this is a lifelong disease, Jessica will need to adhere to a diet which avoids gluten/gliadin.  This will eliminate wheat, barley, rye, and oats from her diet.’  The Pediatric Gastro also advised my parents to go lactose free for 2 to 3 months, then reintroduce after that period of time.  I think it’s nuts that they knew about celiac disease even back then!  It was actually my pediatrician who diagnosed me saying it was either Celiac Disease or Cystic Fibrosis due to my distended stomach and foul-smelling stools (sorry the truth stinks).  And the irony in all this was that he ended up having celiac disease after a number of years!  Craziness.

I do have to give props to my parents BIG TIME.  They went through more than I can ever imagine, from trying to read labels (before ingredient lists existed) to telling Burger King that I didn’t want a bun on my burger.  The employees couldn’t wrap their heads around the concept of just throwing the bun away, if need be, ’cause I could not eat it.  I can even remember when Josh and I stopped at an Arby’s in a tiny town, some few years back, and they didn’t have those automated order screens in them parts just yet.  After placing my order, the cook in the back says: ‘Whaddya mean no bun?’  Cashier: ‘She don’t want no bun?’  Cook: ‘No bun?’  Me: ‘NO BUN!’  Ha!  I can laugh about it now but it wasn’t always easy.

After I graduated from Texas A&M, I moved to Dallas to be with Josh and was googling ‘celiac support groups dallas,’ when I came across this group.

We are a branch of the main organization Gluten Intolerance Group of North America and they have branches all over the US.  If you are in need of some support, check to see if they have one by you, and if not, and you are inspired to make a difference…start your own!  It’s a great way to meet new people and get connected.  I swear almost every time I’m out with new people, celiac disease, gluten intolerance, or Autism spectrum seem to come up.  I don’t normally introduce myself by saying, ‘Hi, My name is Jess and I’m an alcoholic celiac,’ but inevitably my allergy does come up, and then 2 or 3 people chime in that they have a friend or child who is gluten-free, etc.  It really is a small world after all.

GIG isn’t the only group out there though; a few other popular ones are the Celiac Disease Foundation (CDF) and the Celiac Sprue Association (CSA).  They all have great causes and are in this fight together to get celiac disease and gluten intolerance diagnosed quickly and properly (instead of it taking 7 years) and to educate the population, doctors, and health individuals included.

For every 1 person diagnosed with gluten intolerance, 80 people are undiagnosed.

I can tell you from my experience, that NOW is the time to get diagnosed–I even had a doctor from Australia quote me on that!  There is so much information out there and products that literally duplicate every.single.gluten-infested.item on the shelf, that it’s no longer a rarity.  When I meet new people and they have just been diagnosed, they ask ‘What can I eat?’ and I tell them start with meat, fruits, and veggies then go from there.  I have FINALLY taken my own advice, after a decade, and now consume those items sans packaged foods since going Paleo.

Alrighty then, no excuses!  Get out there and do your research.  If you don’t feel well and doctors are telling you you’re crazy, find another one until you get the results you want.  Seek out local support groups if you just want someone to talk to or need help finding reputable doctors.  There are a number of labs that will do gene, stool, and/or blood testing, like EnteroLab and Cyrex Labs, that can help give you more information.

There you have it, a brief insight into my celiac journey.  And now it’s your turn.  Do you have celiac disease or gluten intolerance or know someone who does?  What was the struggle/journey like?  I know there are people out there who are bitter and hate this diagnosis or will cheat ’cause it won’t kill you (yes it will!) but I have to say I don’t mind it.  I monitor every single item I put in my body and couldn’t be luckier.  Yup, I get to say that because I have 30 years behind my belt and I finally feel the best I have ever felt in my entire life!

Note: photos from here and here.

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10 thoughts on “Celiac Disease Awareness

  1. well said sis!! ill be taking an antibody test soon to see if im being effected or if im still a silent or latent carrier. keep spreading the awareness! love u!

  2. WOW babe, you are awesome! I’m sooo proud of you and how far you have come and what you’ve accomplished in your life. Such a wonderful Mother, Wife, and Daughter and Celiac advocate. We are so blessed to have you. I Love You So Much

  3. Pingback: Going Paleo: Part One « Crunchy Hot Mama

  4. You are the first person I’ve heard that had a similar early experience as my daughter. . . my middle daughter was the first dx with Celiac (now all three girls and mama are). The Dr’s initially thought it was Cystic Fibrosis. . .her first Celiac panel came back as not reactive (at 18 months) but at 5 was finally dx! Our Dr.’s weren’t in the know. . . but I had done enough research to keep pushing!

    • That is crazy! I’m shocked it took that long for her to get dx-poor baby. How is she doing now? I’m surprised back then they could figure that out. Good for you staying strong and being persistent!!

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