Wednesday, July 13, 2011

Family Affair Continues

Gramme, Grandpa Bud, Dad, Me and Ceci (June 2011)
The other night I got a fantastic voice mail on my phone from my Gramme, while all phone calls from grandmas are great, this one was exceptional.  When I was home in Oregon, about halfway through the visit my Dad got a phone call from his mom saying that she wanted to try a gluten free diet to see if it would help resolve some of her health concerns.  Tonight's phone call was to tell me she was feeling better than she has in years!  Can I just tell you that she sounded like a new woman!!!  I have to be a bit honest the family has been questioning grandma's lucidity the last few years, that was not the lady I heard on the phone tonight, I am so excited to see this change.

I called Gramme back today and had a long chat with her about how she was feeling and the changes she noticed from being on a GF diet.  I was blown away to hear that she was no longer suffering digestive problems like she had for years, and was feeling fantastic.  Gramme also told me that she had been to the Dr recently and the Dr had taken her off more than half of the 16 medications that she was taking less than a month ago!  Can you imagine!  16 medications per day!!  All that was cut in half from following a gluten free diet.  You can't imagine how excited I am that making a change in diet worked so well for her.

While I was home we had a visit with Gramme and Grandpa Bud where Gramme repeated the same story twice within 10 minutes and with almost the exact same wording each time.  This sadly is not uncommon, the whole family knows it happens and is concerned about why it's occurring.  It's intriguing from a celiac perspective because Tim has noticed that when I eat gluten I become tired, listless and unable to concentrate.  Now if I multiply those symptoms out by 76 years worth of tortured digestive and immune system, maybe there is a glimmer of what Gramme has gone through.

The gluten free diet was a bit of a rough start, Gramme was worried about switching over to a gf diet and the difficulty of having to read every single label and having to entirely reeducate herself.  I have to say I know it is tremendously daunting to start on a gf diet, but to do so at 76 years old is pretty frightening.  Dad and I wanted to do as much as we could to help, so we made a trip to whole foods to grab some easy introductory gluten free foods to bring over to Gramme.  A few days later Gramme was over to Mom and Dad's house for a party and had tons of questions about what was safe to eat and what wasn't.  I took a sheet of paper and on one side I labeled the top "safe to eat" and the other side was "not safe foods" and just started writing down as many things as I could think of on either side.  Gramme had several specific questions so I wrote those items in the appropriate columns, such as potato chips, chocolate covered raisins, rice, potatoes, and many more.

The fact that Gramme may have celiac is hugely interesting, because up until we realized my Dad suffers from Celiac I was alone in all this.  We've known that Celiac is a genetic disease, but no one else in the family had symptoms, so I was this little genetic anomaly that was just full of every recessive gene possible that didn't seem to affect anyone else.  Turns out I just had the least tolerance the earliest in life, as well as being the one with the greatest resources to discover what the heck was going on with my poor little body.  This is AMAZING!!  I'm normal in my family!  It comes from somewhere, I'm not weird!  (Ok, at least not regarding celiac.)

So the possible genetic path of celiac for us has been paternal grandma, Dad, Me, and now Ceci.  I'm the only one who has tested positive so far and the last time I tested positive was in 1997 via blood test.  I think the positive test is not the most important, it was something that Dr Vikki Petersen brought up in one of her youtube videos, don't get hung up on the positive or negative test, if a gluten free diet makes you feel better.  Dr Vikki Petersen also talks about the frequency of false positive tests in another video.

Recently I have realized that when Tim or I visit the Dr, we not only need to mention our medical history, we also need to discuss how Ceci's health concerns relate to us.  If your child or grandchild has a genetic illness, it would be wise to have the parents or grandparents tested.  Our family's medical history is not the only place to look for answers, we are connected through genetics and together we can find the answers to our illnesses.