Monday, May 14, 2012

A Difficult Diagnosis - Sharing a Friend's Story

I can't believe it's May already - but here we are! May is Celiac Disease Awareness Month and with that said, let's help others feel better!

I started this blog in Feb. 2011 in hopes to 1) Help other parents of children with Celiac Disease and 2) Raise Awareness.  I go back to my
"I Wish I Knew What I Know Now" Post to remind me how important it is to let others know about celiac disease.

I would like to share a Celiac Disease Symptom Check List with you so you can pass it along to friends and family that you may be concerned about. There are so many symptoms associated with Celiac Disease which in turn becomes difficult to diagnose.

Last year, I had an opportunity to meet a new friend while at the Gluten-Free Expo in Chicago. We got to chatting and I wanted to know more about her story and how she became diagnosised with celiac disease. I asked her if she would be willing to share her story with others to show that there really are people out there with a variety of symptoms that can be "difficult to diagnose."

Introducing my friend Amy and her story:

"When I look back I probably had Celiac definitely in my teens, possibly earlier. But my symptoms got really bad after leaving college. 

Once I left college I started noticing my symptoms as a problem. I had really bad acne in my 20's, horrible indigestion (but never GI symptoms until right before my diagnosis), migraine headaches, numbness and tingling in my hands and feet, joint pain, anxiety and fatigue. I could sleep from Friday night to Sunday afternoon and still feel tired! I was tested for the typical illnesses - arthritis, diabetes, lupus etc. but all my tests came back normal. I joked at one point I had more specialists than my great grandmother who was in her late 80's at the time. 

After I got married we tried to start a family. I wasn't even 30 and couldn't get pregnant. My OB told me it was normal and not to be concerned but I couldn't believe that I was 28, never felt good and couldn't have a baby. I felt miserable emotionally and physically. I took my health into my own hands and started using what else - Google! I started searching my symptoms and then added infertility and the first link I clicked was about Celiac and I immediately knew that was the answer to everything. It was a 7 year journey finally coming to an end.

WIthin a few weeks I felt like a different person. Within a year I was pregnant with my son and had a normal, healthy pregnancy. He's now 4 and has a little sister who is 2.

In 5 years the gluten free offerings have come A LONG way. On days we are busy and on the go I make sure to throw a Go Picnic in my purse. They are filling and will hold me over if I can't get a safe meal out. Endangered Species chocolate squares (or Hershey's), Kraft marshmallows, and Kinnikinnick graham crackers make delicious smores in the microwave. Udi's Pizza Crusts make great pizzas and if you warm them slightly they almost remind me of pita bread so I like to dip them in hummus."

                                                                                                                          Now I'm hungry! :) 
                                                                                                                          Amy

I'm so happy Amy is feeling so much better and enjoying life with her family.  Life is too short to feel terrible! PLEASE teach others about celiac disease.  Share this post with others so they can see that celiac disease isn't just about GI issues. It's so much more!

Pass along this Symptom Check List today to someone you love.

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