Monday, December 8, 2014

Diagnosiversaries: 7yrs one, 5 mo the other

Today marks the 7 year anniversary of J.J.'s diabetes diagnosis.  It's always a bittersweet day. I usually shed a few tears....don't really know why...but I do.  We normally celebrate with our family Toys for Tots shopping trip and takeout.  This year the older girls and Jason are working at the Operation Christmas Child sorting facility which leaves me at home with 'da boys and time to write!

2014 ~~THE BAD

After J.J's Celiacs diagnosis in July, the Celiac expert advised the our entire family get screened for the disease, since it is genetic.  I had a daughter leaving for overseas, so we quickly got all of us in for the blood draw.  My results came back quickly, with really high numbers.  Two of my children were also testing positive, but with relatively low numbers.

In September I had an endoscopy to get a final diagnosis.  My results came back being positive for Celiac Sprue(the official name), and the damage being severe.  How severe?   Zero being no damage and 4 being cancer..I was 3C..the closest to 4 a person can get.  So severe that I'll never totally repair my small intestine.  It will take 2-5 years to "heal" as best I can...and that is no guarantee.  I went completely gluten free the next morning.  I don't eat out.  I eat very few processed foods...because gluten is in just about everything it seems.  It's a drastic lifestyle change for us.

My two other children will be re-screened when the one gets back in the states.  We'll continue on with further testing with them if needed.

J.J.'s A1C was up in November...8.1!  Which really was a result of figuring out the GF lifestyle.  We would get the gluten free taken care of, then forget to dose for his diabetes.  OR because we are using so many whole foods it's harder to predict the carb counts.  Plus the GF labeled foods make his numbers wacky!!! Thankfully our ENDO completely understood and considered this a new diagnosis year....much grace!

2014~~THE GOOD

To say I am thankful that J.J. was diagnosed with Celiacs sounds completely wrong.  But yet it doesn't at the same time.  Do I want him to have it...NO.  But the fact that he is screened because of his diabetes, and because he was diagnosed, I was diagnosed.  His diagnosis may very well have saved my life.  And so I can be thankful.

Me being diagnosed lifts a huge burden off of J.J.  Diabetes is a hard disease to have, but having both he can say that he'd take diabetes any day over Celiacs.  Having a Celiacs "buddy" in the house, has helped him through some hard times.  It can get depressing watching people eat some of your most favorite (mainly takeout) foods right in front of you.

We are eating better, that's for sure.  My new favorite stores besides bookstores are health food stores...I shop 5 different local health food stores plus online for all the foods I need.  It's really adventurous...but sometimes daunting.  Either way I know the foods we are eating are better for J.J. and his diseases.  As an example....a normal spaghetti meal would have been in the 100 plus carb range for J.J....all that pasta and bread.  Now it's maybe 15-20 carbs.  He likes spaghetti squash or zoodles with his sauce and meat.  He's learned to make a pancake with peanut butter...he tweaked the recipe to also include bacon....again reducing his carb intake and increasing the protein and fat to keep him satisfied longer.

J.J.'s insulin intake has decreased since going (healthier) GF.  When we saw the endo we found out his insulin needs have quite a bit.  She told us many people when they have Celiac often just substitute the GF versions with the rice flours, but the carbs in those are sky high, and the satiation level is almost hunger is always an issue.  The fact that J.J. was able to recognize this quickly (he tried the boxed GF mac and cheese for awhile) has been a huge plus for his diabetes.

2014~~THE UGLY

Having another misunderstood disease really STINKS!!!  Because GF is considered a fad celebrity "diet", it makes having an auto-immune disease that is triggered by gluten such a bummer.  People don't understand this isn't a FAD for us.  Gluten is POISON!!!!  Please read that again....POISON to our system.  Gluten triggers a response in our bodies that attacks our small intestines....lingering for up to 6 months with just ONE minute exposure.  It's something we will never KNOWINGLY eat again.  It's not a CHOICE(unless you consider poison a good thing to ingest)!!!!  Yes...I choose to eat poison....ummmm....NO!!!

One of the harder aspects of being gluten free is cross-contamination.  Knowing that a food hasn't been cross-contaminated somewhere in the process has been a challenge.  Shopping takes a tad longer as I decipher the labels...that's why I like health food stores...they all have labels letting me know which products are GF.  For now "my kitchen" is in our school room because it has a sink and tables I can work at.  Plus a fridge close enough to keep me from having to run around too much.  That room is my GF safe haven.  No gluten allowed....or very little anyway!!:)

People sure do get offended by your food choices, when it's pretty much NONE of their business what or how you eat.  I always bring my own food wherever I go.  It's just how it has to be for now.  We are on a mission to heal our bodies as best we can...and it happens to involve food.  You wouldn't ask a cancer patient to put some special concoction in his IV just because YOU made it, and it should be okay for him.  Well, then don't ask me to eat your "GF" cupcakes that you whipped up in your glutened mixer. OR say to me "there are no gluten ingredients in this dish" and expect me to eat it.  I won't.  WHY?  Because I know you have a glutened kitchen, and I don't know if you know all the crazy names out there for gluten.'s so much less stress on us when we bring our own food, than to worry about whether the food you've prepared is glutened or not.  It's nothing against you, or your cooking.  We appreciate your thoughtfulness...but don't be offended when we turn down those cupcakes....really it's no big deal....we just don't want to be poisoned!

And there-in lies the problem again.  People on a FAD diet have a choice to go off of it.  Or they can "cheat" when faced with certain social situations.  But we don't have that choice, so the misconceptions out there are tremendous.  We know so many people that are GF, but they don't have to be strict.  I have to be so strict that if the product doesn't label it gluten free...I can't eat it.  J.J....his damage being less severe can eat out if we've done our research and asked the proper questions of the restaurant.  So even in our family we have varying levels of compliance...but we are both GF....we can't just decide to "cheat" for a day.

My calendar next to my bed....November!;)


I couldn't end with the ugly.  Life is hard....but God is good.  That lesson is constantly being driven home to us.  Jesus is sweet.  He is the bread of we have HOPE!!  What is gluten anyway??? Right now it "seems" like such a huge part of our lives, but when we keep it all in perspective it's just a protein we need to avoid.  There is so much more to life.  So as we continue on our path to physical healing we take comfort and have great hope in our great God who gave us our bodies.  It was no accident...our genetic code.  All has been sifted through HIS loving hands, and in this we REJOICE.  One day our bodies will be fully healed(Ps 103:3), and there will be no more tears(Rev 21:4)... in this we HOPE!!

Happy Diagnosiversary!!!


1 comment:

Corrie said...


I loved reading this - While it has been hard, I can see God's hand in all of this in your writing. Having bealt with Celiac's for over 10 years, I wish I could say it gets easier - and in some ways it does. But because of the fad diet thing, it can become more challenging as not all of the "new" GF foods are healthy options! While I don't have the diabetes issue, we have a corn allergy which makes life a bit more challenging here. I am so thankful that you have been diagnosed before hitting the "4" level on the scale! Praying for complete healing for you as you watch everything that goes into your mouth - literally! And Glad that it is making a difference with J.J.
Have a Merry Christmas as you know the reason for this season and that He holds you in his hands as you walk through this new chapter!

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