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

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.

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

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?)

Tales of a Celiac Cheater…

Okay, so we’ve glutted ourselves on gluten, massive amounts of gluten, for the past three months.  I am quite sure that the family has collectively gained a minimum of twelve pounds.

Jessie’s endoscopy was this past Thursday.  It went well.  She didn’t feel half as crappy as she did the first time.  In fact, the little twit  did so well that I wasn’t able to gain one ounce of loopy behavior, confession, or seriously embarrassing photos to hold over her head.  THAT’S how well she did.

We all, including the doc, believe that she has celiac, even without visible symptoms.  Stomach Doc said he’d probably call us with the biopsy results tomorrow.  When we whined that we expected the results to take at least another week, he winked and said he’d give us until Tuesday.  🙂

Back to the topic…gluten.  This is just a sampling of what Jessie has done to her tummy recently:  Panera Bread (one baker’s dozen of the cinnamon crunch bagels), pizza, pasta, fried chicken, did I say pizza?… um…oh yes.  LATE last night she made cupcakes.  She’s made cookies and waffles.  If I had more time and more space, I’d list more.  It’s true.  She’s been a partying fool.

Can’t say I blame her.  Would you?

It’s Practically Over…

Summer is passing quickly for us.  We have traveled, spent time with friends, played and rested.  To go one step further, we’ve had a roof over our heads and food on the table, so complaining would be a sin.  Forgive me because I’m about to sin.

School actually begins on August 3rd!!!  Clearly the people down here in Georgia are craving year round school.  The concept is nice during the year, but to go back while it’s still summer – well, that’s just a crime in my book.

We have now corralled Jessie and brought her back home for the two weeks of summer remaining.  She’s had fun, running mostly on adrenaline, I think.  Now she’s tired and grouchy. Yes, that’s what mom is given on a silver platter after traipsing all over the east coast this summer.  Ah, the rewards of parenthood.

Jessie is eating as much gluten as she can possibly get her grubby little hands on.  Her endoscopy is scheduled for next Thursday morning.  I really think it will be positive for Celiac Disease.  I’m wondering if, by that time, Jes will have consumed so much bread that she really won’t want any more.  It’s looking as if that may be her goal.

Goodbye until next time.  Enjoy yourself!  Life’s too brief NOT to.

She’s a Celiac!

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.”

Day 6 – Gluten Frenzy Continues

We are currently on day six of our gluten consuming adventure/experiment.  Jessie is taking the attitude that she probably does have Celiac Disease and is using this opportunity to eat as much bread, pasta, etc. as she can.  So far, believe it or not, she has had absolutely no reaction.  I am withholding excitement because, well, I’ve just learned to withhold excitement AND I’ve found out that while most celiacs have immediate reactions, it’s possible to not react for 5-7 days or to be asymptomatic.  So, I think we both prefer to remain a bit skeptical.

At any rate, Jessie is, at this moment reheating leftovers from Olive Garden, including the garlic breadsticks!  Yes, the girl is having a little party for herself.  

Unfortunately, the insomnia returned about two weeks ago.  I’ve got a call in to the pediatrician.  If we get incredibly lucky and a miracle occurs tomorrow, Ms. Pediatrician and Ms. Specialist in North Carolina will have a little telephone pow-wow to confer on the matter before coming up with a solution/prescription.  Could that actually happen?  It sure would be nice!  

Jessie has tried melatonin, tylenol pm and does pilates to relax not to mention the nortriplyline and Lyrica she’s already taking that should assist with sleep.  At least it did until about 7 months ago.  Nothing is helping now.  It seems like the bane of her existance these past 7 months has been migraines, which were taken care of with the diagnosis and treatment for hypotension, and insomnia.  The insomnia is a stubborn little nuisance that doesn’t want to go away.

Day 2 – The Gluten Frenzy

We’ve made it to day two of our experiment. Yesterday, Jessie stuck with only the bottom half of a bagel with no side effects.  She said that she had a little stomach gurgling last night, but that’s it.  Today, she’s becoming quite bold.  She ate the TOP half of the Panera bagel for breakfast and is currently having a couple of small pieces of a Totinos cheese pizza for lunch.  I may have to draw the line here on gluten for today as the prospects do frighten me a bit.  She’s like a vampire who catches the scent of blood (can you tell I’m reading Twilight?)  Once Jessie gets her first taste of real bread, she becomes crazed. 

I’m curious about how long your system can possibly delay a response.  Google has told me nothing on the topic.  I know that you can feel side effects almost immediately, but can there be a delay?  Hmm…the question of the day.  I guess we could find out, huh?

Updates to follow.  Stay tuned, if you dare.

It’s Blue Jean Friday

That’s what we like to say around the house.  My husband gets excited about Blue Jean Friday.  Although, if I look a little deeper it’s probably excitement about the impending weekend rather than the fact that he gets to wear his jeans.  In addition, the sun is supposed to show up for Blue Jean Friday. YEAH!

Yesterday was a good day.  Jessie went to school around mid-day, then stayed afterward to play catch-up.  In all, she was there from about 1:30 until 4:45 – a good day indeed.  The best thing is that she didn’t feel the exhaustion afterward.  In fact, she was in her room doing pilates when I went to bed last night.

We’ll see how she fares upon waking, but the plan is to head back into school this morning for a few hours. Next week is spring break and I’m thinking that, if we’re lucky, the following week will get us back to semi-normal/normal.  Maybe the medicine is completely into her system and working properly.  Whew.  It’s been a LONG seven months.  Gosh, I didn’t realize that this bout has actually lasted SEVEN months. I’m talking seven months for just this phase.  She’s actually been sick since 2005.

This whole sickness continues to boggle the mind.  What have we learned from this experience?  Does she have a myriad of illnesses including CFIDS, Celiac, and Orthostatic Intolerance?  Is she pulling out of CFIDS and moving into something else?  Did she ever really have CFIDS?  My answer is, of course she did.  The onset was too textbook.  Even the specialist, who sticks to the diagnosis of clinical CFIDS wonders if the majority of her problems are from Celiac. The symptoms are extremely similar.  The new pediatrician questions whether or NOT she has Celiac.  We will go to an gastroenterologist this month and finally put that question to rest.  The cardiologist believes that CFIDS is an overall name for an underlying illness.  I tend to side a little with him.  I think it’s something that will one day be figured out by a researcher and make complete sense.  While I’m fantasizing, I’ll add that it will have a cure.  Hey it’s my brain and my thought process, I can add anything I want to.  

Once again, my constant questions rear their ugly head.  But isn’t it the questioning that moves us forward?  I like to think so.

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.

What’s With the Gluten-Free Metallic Taste?

 

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?