Tag Archives: gluten-free

Celiac, CFS, Hypotension – To Keep Up, Jump…

friends

No, not literally.  It may wear you out and frankly, you won’t get anywhere.

Okay friends, strangers I hope will become friends, and anybody else who’s interested.  I’m trying to transition our Living Chronically blog over to it’s new and more “Lori friendly” home.  After you’ve made that all important leap of faith, I’d love for you to join in.  Please click on “The Committed” button to join in and I’ll be able to jump back and visit you some time as well!  If, for some unknown reason, you aren’t comfy doing that, you can click on “The Alternative” button.  I and my other blogger friends won’t have the pleasure of seeing your pretty profile on my blog.  But, hey, whatever floats your boat.  The important thing here is to jump.

Ready?  Here’s where you make the  JUMP See you there!

P.S. Please be kind.  It’s a work in progress and beauty sometimes takes it’s own sweet time.

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We’re Told That The Party’s Over. Wanna Bet?…

She repeats, "Gluten is my enemy. Gluten is my enemy..."

She repeats, "Gluten is my enemy. Gluten is my enemy..."

We received the official call today.  Stomach Doc says, “Tell Jessie that the party’s over.”

In anticipation of the expected call, the kitchen has been restocked with gluten free pasta, Bob’s Red Mill flour, etc.  We’re not trying to fool anyone here.  We knew it would end.  C’est la vie.

BUT…  Refusing to give up hope, accepting that the party is, in fact, over is just not right in our book!  Hail to the party!  The party shall NEVER be over, we feverishly cry.

So, we will happily collect the gluten-free supplies for the pantry, FOREVER attempting to create that perfect gluten-free cupcake.  Party over?  We think not!  Who needs stinky old gluten anyway?  (Well, mom here does, from time to time.  But we’ll just keep that as our little secret, won’t we?)

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She’s a Celiac!


Official town crier, "I don't heart gluten!  But I LOVE tuna!"

Official town crier, "I don't heart gluten! But I LOVE tuna!"

Where do I begin?

Well, you know (and if you don’t, read up) that the gastroenterologist advised Jessie to try out the whole gluten thing a couple of months ago.  The girl has seriously had a party for herself for the past eight weeks or so, consuming every gluten-laden food in sight, with absolutely no side effects.  As directed by Mr. Doctor, we went to have the labs done earlier this week to see what’s going on.

My opinion?  I told  Jes that it was a formality.  She clearly doesn’t have celiac.  She said she has no side effects but had a nagging feeling.  (Okay at this point you know the ending, but I’ll go on)  Doctor’s office called us this morning to say that her levels were up and it clearly indicated that she does have celiac.  I nearly fell over.

I marched upstairs to deliver the good and bad news to Jessie.  Good news?  Starbucks now has gluten-free cake proudly displayed for all celiacs to enjoy.  Bad news?  She’ll be eating it.

The nurse also said that, while Jessie’s levels were clearly indicative of celiac disease, she wasn’t the worst case scenario. The T3 test showed that her level was 9 while normal is 0-3.  Nurse advised that she had someone in the office yesterday whose level was 175. So, that helped to put things into perspective.  Apparently there are LEVELS to this disease.

We’ll be going in to see the doctor on July 1st and will discuss whether it’s safe to cheat from time to time when you have no symptoms or if she has to refrain from the gluten 100% from here on out.

So there you have it.  I’ve all but abandoned my “Gluten-Free Foods That Don’t Suck” section.  Guess I’ll be chugging along again!

I hope you are all having a wonderful summer.  We certainly are!  The school pressures are gone, THANK GOD!  I’m going to brag a bit, but hey, I am a mother.  Jessie pulled straight A’s.  It’s a good thing.  Now I have to deal with the school this summer and beg for the right classes next year.  In the words of Ms. O’Hara, “I’ll think about that tomorrow.”

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Spring Break and Gluten

Spring break is over and we are slowly returning to our “normal” lifestyle.  I spent a few days visiting my mom in North Carolina and upon returning on Monday, was faced with a very dirty house, a huge pile of dirty laundry, something vaguely but not quite resembling banana pudding in the refrigerator, bills, a doctor’s appointment this morning and did I mention a huge pile of laundry?

First, the week passed with no signs of protest from Jessie concerning her father’s trip to Virginia.  I was amazed and quite honestly a bit frightened.  When things go too smoothly, something new is ALWAYS lurking around the corner.  Thankfully, it was a good week off.

We went to visit our brand new Georgia gastroenterologist this morning for a little meet and greet.  (You know you’re seeing too many doctors when your child asks which part of her body we will be discussing today.)  We are entering our favorite zone, “Experiment Land” yet again.  Jessie was ALL OVER this one.  Amazingly, she has already forgotten our little experiment with her medication last month.  Kids – how soon they forget.

Anyway, the doctor looked over her previous endoscopy and bloodwork and noted that the Virginia doctor had doubts as to whether the diagnosis should be Celiac Disease.  The biopsy was positive and the bloodwork was iffy.  He said that if there is any question, the only way to be sure is to consume gluten and see what happens.  If her symptoms return, well, you get the picture.  If not, then Jessie gives him a little blood in a month and he runs the tests to see what they show.  I side with the doctor on this reasoning.  This is a lifelong diagnosis, so you’d better be pretty darned certain that you are on the money before giving up an entire food group.

Moving along.  First, Jessie literally told this little doctor that she loved him.  Her mouth proceeded to water so much that she could hardly form her words.  He quickly added that by tomorrow, she may do a complete 180 on her opinion of him. Next, as soon as he left the room, she decided what she has missed more than anything else.  It was a no-brainer – Panera Bread.  Think about it.  If a person has, possibly, a one-shot chance to have gluten for maybe the very last time in her life, she should get what she desires.  

Thanks to the trusty Garmin we’ve lovingly named Myrtle, Jessie and I located the nearest Panera and headed 7 miles in the opposite direction of the doctor’s office, which was 10 miles from our house to find the coveted cinnamon crunch bagels.  We anxiously arrive at Panera only to find that they had SOLD OUT of the darned things.  Not to be out done, Myrtle promptly located the next Panera Bread which, may I add, is 8 more miles south.  This time a little light bulb lit up and we called to see that they had what we wanted.  They did!  We drove literally into the city of Atlanta (which is a BEAR) to get these stupid bagels – excuse me – delicious bagels.  Jessie was then terrified to eat one, so she smelled it all the way home where she carefully toasted it and sliced it like a pizza.  That was about five hours ago and we haven’t seen anything ugly yet.  We can only hope and pray.  If nothing happens, I have three more with her name on them.

Anyway, that just about sums it up, except for the banana pudding.  I don’t know what happened.  All I can say is that was unrecognizable, the pudding itself never set up and was an odd brown color.  It went bye-bye.

Have a nice evening!

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A New Day, A New Doctor

We went to see the new PCP today and really liked her, thank goodness!  She said the magical words Jessie’s been hoping for all year; she’s hoped for these words even more than the possibility of hearing, “I don’t think you have Chronic Fatigue.”  The new doctor said, “I’m going to send you to the gastroenterologist to do a recheck on this Celiac thing.  It may be a good idea to have another endoscopy.”  Yep, the girl is holding out hope that she can eat wheat.  Of course, I quickly added that she needs to be prepared to hear that she does indeed have this disease.  

In all honesty, we are a little confused as to what, exactly, she’s having trouble with.  Jessie ate Chick-fil-A chicken nuggets last year and didn’t have a reaction.  She continues to eat the prized nuggets regularly without side effects.  In every other aspect of her life, she is gluten-free.  Yet she has a reaction when she eats cross-contaminated rice.  I guess a second check would be interesting.  

The doctors are certainly making their money off of us this week.  We go back to the cardiologist tomorrow for a recheck. He’ll have to get the sad news that his experiment failed and Jessie is back on all of the medication.  

I know I’ve said this before, but wouldn’t it be nice if you could just kidnap all of your doctors and put them in a room together?  Then they would discuss their various “theories” and ultimately reach the perfect solution or cure.  That’s just not real life, is it?  I guess I’m dreaming again.  Shame on me.

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What’s With the Gluten-Free Metallic Taste?

 

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What is with this metallic taste?

Please tell me.  If you happen to be an experienced gluten-free baker, please tell me why are our baked items coming up metallic?  You can almost see a silvery sheen in the light!

Jessie has tried several batches of cornbread which turned out metallic.  We threw out the flour and started again.  It only happens with gluten-free recipes.  It’s not the oven or the baking dish.  The same thing happened when she tried baking brownies.  

I am beginning to wonder if xanthan gum may be a common denominator. However, what do we use as a substitute?  We are calling out into the worldwide web searching for a solution to our dilemma?  Any thoughts out there in gluten-free internet land?

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A Reason To Celebrate

 

A sad photo...but SOOO good!

A sad photo...but SOOO good!

 

No, Jessie isn’t magically better.  She’s still plugging along.  I guess the first night was a fluke and it’s taking a bit to get the medicine back into her system.  I think she’s improving at a snail’s pace.  Still no school, but I’m hopeful that today she’ll wake up a bit more refreshed and can go in for a couple of classes.

Last night my husband got some really good news with his job and I’m not allowed to give specifics.  But suffice it to say that we made Jessie go out for a celebratory dinner last night.  We went to Outback and at the end of the meal, Jessie begged me to share a Chocolate Thunder From Down Under.  I was so full from my dinner that I couldn’t.  We let her order it anyway because it’s one of the only places we know of that offers a gluten-free dessert.  Even if you can gobble gluten happily, you haven’t lived until you’ve tried this dessert.  It’s to die for.  

In the end, keeping the tradition and philosophy for all women around the world, I ate chocolate, and ate, and ate.  Jessie and I attacked that dessert like nothing I’ve ever seen. The guys were talking and a few minutes after we’d received the dessert, they happened to glance in our direction.  Their mouths fell open and they died laughing.  The plate was completed clean and we looked like two fat cats who’d just eaten the prized canary!  

After dinner, we came straight home, put on our jammies (not the guys – that would just be wrong), piled onto the sofa and all four of us watched American Idol.  Go Megan, aka – Twirly Girl.

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