Tag Archives: celiac

New Celiac & CFIDS Posts, New Location…

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Celiac Update

Sweet Summertime

Sweet Summertime

I hope you are all having a wonderful summer.  It does seem to be flying by for us!  I wrote a check today and wrote June instead of July.  At least I got the year right! 😉

Brief update:

Jes has had a great summer.  She’s been able to relax and enjoy life for the past month.  In fact, the entire family has had a great summer so far.

We went to the gastroenterologist and had a little pow-wow about the new labs which were positive for Celiac.  As many of you know, we were shocked.  I later read that many celiacs show no signs of the illness, which makes no sense to me.  But that’s a topic for another day.

The doctor advised that, since Jessie is showing no symptoms, she should continue eating gluten (she’s thrilled) through the end of July, thereby giving her three full months.  We will then have another endoscopy to get a biopsy of her intestine to see if it is damaged.

I can’t remember the actual numbers and how they work, but while her antibody numbers in the labs were positive for celiac, they were not very high.  I think on one, the normal range was 0-3 and Jessie’s was a nine.  The doctor had a patient earlier that day who’s number was 175.  So, with that, the whole diagnosis remains in question.  Does she have celiac, but a mild case?  Can she eat gluten with little damage to her intestine?  The endoscopy will answer that question and give us a final answer.

So, that’s it.  It seems that the longer we deal with chronic illnesses, the more we learn that nothing is rational or normal, even the abnormal!

With that said, I bid you all a fond farewell until our next update.  Have an absolutely splendid July!

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Busy Week

I’ve lost track of the days and am too lazy to figure out when Jessie began eating gluten.  At any rate, she has yet to see a reaction, which is wonderful.  I think we have the lab work done next week.  If it’s negative for Celiac, then they are probably going to do another endoscopy to make sure everything is okay.  You can get false negatives with the blood work and the final result will be when they have a peek at her intestine to see if there is any damage.

I am HOPING that the sleep pattern gets a little better and holds out until the end of May because the school crunch as begun. Jessie felt pretty bad yesterday, but went to school in the afternoon to take two tests.  It will be like that every day from here on out. Great way to work on that stress level, huh?

Today I (we) have Jessie’s 504 meeting at school which should be interesting since she’s had such a bad semester.  I still haven’t dealt with the recommendation of regular-level classes for the fall.  I was always under the impression that the teachers make their recommendations, but the parents can overrule.  It’s been told to me that they need to see Jessie in school full-time in the fall to allow her into the honors classes. (mostly “A’s” a a couple of “B’s”.  nothing ever lower, even on homebound) According to my research, we’re getting dangerously close to discrimination and I don’t want to have to result to threats.  I would be okay going along with their suggestions, except for the fact that classes are many times full at the beginning of a semester, meaning she wouldn’t be able to get in.  Today’s 504 meeting won’t cover that topic.  It will cover any accommodations that will be needed for school. 

My car goes to the shop this morning and I’ll drive a rental for a couple of weeks.  It’s a relief because I’m beginning to hear strange noises when I drive.

I may be taking a “roadtrip” with Jeff on Wednesday and Thursday, but I’m still on the fence.  He has a meeting in Charlotte Wednesday afternoon, then will head to Roanoke, VA for the night with meetings on Thursday.  Then he’ll drive back to Georgia (7 hours) on Thursday afternoon, putting us back at around 9:00.  The kids are urging me to go.  I have to admit, it would be nice to see my buddies in Roanoke for a few hours on Thursday.  Plus the location of his meeting in Charlotte is across the street from a great mall.  I think I could “suffer” through a few forced hours in Southpark!  Finally, he’ll be staying at Hotel Roanoke, which is a neat hotel in downtown Roanoke.  Hmm.  My only concern is the kids.  Jessie has to stay on track, which she assures me she’ll do.  I can picture them now eating candy bars, popcorn and soda for dinner on Wednesday night.  Sheesh.  It’s tempting, all the same. 

Have a good day.

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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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I’m So Ashamed

WooHoo for warmer weather!
WooHoo for warmer weather!
And picnics with friends...
And picnics with friends…

And roasted marshmallows!

And roasted marshmallows!

Before talking about the wonderful springtime weather, allow me to confess.  I glutened my daughter.  No, I didn’t do it on purpose and it doesn’t make much sense, but the fact remains that Jessie was glutened by her own mother.  

One night this past week we had pork chops and rice for dinner.  The next day Jessie told me that she had cramped really badly that night.  No other symptoms, but she knew that it was the same cramping she’d experienced before.  We mentally went through the entire recipe and there was nothing.  The only difference was that I’d just purchased Kroger brand basmati rice which was different that the brand I had been using.  Sue me.  I tried to save a few bucks.  

Fast forward to last night.  We had chinese.  (This is no joke.  I am a fabulous cook of chinese cuisine.  Jeff is beginning to call me Lori-son while doing his best oriental imitation.)  I said that we were going to have the rice, so if Jessie had cramps again, we’d know that it was the rice.  Sure enough, it was worse for her last night (sparing gory details here), but thank goodness by morning it had passed and she felt better.  The only thing I can figure is that the rice is processed in a plant that also processes wheat products and it was cross contaminated.  Golly, I’m sticking with the expensive rice from here on out.  Even when you think you’re safe, you just never know about those sneaky gluten attacks.  

It’s Sunday now and Jessie told me that, overall, the headaches have been pretty bad this week.  This morning she is feeling better with no tiredness, achy muscles or joints OR headaches.  It’s been five days now since she stopped taking the other two prescription medicines that she’s taken for over three years.  Every morning I wake up wondering if she will have a major crash.  Well duh, that was a stupid remark.  It’s really no different from any other morning in the past three years.

Now for the cheerful springtime talk.  It’s been beautiful here this weekend with temperatures in the mid 70s.  Jeff and I stopped off after church at Wally-World to pick up tennis balls (one canister for us and another for our dog, Sophie) and he’s taking Jessie down to the tennis court this afternoon to send a few of those new tennis balls over the fence.  My irritatingly worrisome self needs to remember to tell Jeff not to let Jessie overdo it. 

Have a good week!

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What Do You Get When You Combine Three DVDs and an Oscar?

 

Chick Flicks

Chick Flicks

You get the ultimate combo that makes a teenage girl’s heart go pitter-patter.  Well, one of the things anyway.  Jessie’s friend, Tommie, dropped by yesterday with three DVDs.  The DVDs added in with the Oscars on Sunday night guarantee a weekend of dreamy chick television.  I will probably participate in the Oscar part and Thoroughly Modern Millie.  The others go right over my head.

We’re on a bit of a level plain now with symptoms.  The headaches are ever present.  Jessie continues to feel puny in general.  I know this because she baked gluten-free chocolate chip cookies last night – always a positive sign that my daughter is feeling puny.  Well that or actually saying that she feels bad, which she doesn’t do very often.  Actions speak louder and all that.  *Hopefully the recipe will follow when Jes wakes up and I get it out of her.  Check back later.

You know how you turn to certain things or activities when you don’t feel well?  For Jessie it’s baking.  Granted it will probably take 2 – 3 hours to bake one 30 minute recipe of cookies, but she receives tremendous comfort in baking.  When you have chronic fatigue, you are up working for maybe 15 minutes, then you sit for 15 minutes, then up for 15 and so on until the task is completed.

Anyway, I believe that the movies, the Oscars, chocolate chip cookies and maybe a little microwave popcorn is just what the doctor has ordered for the next couple of days.

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Gluten-Free Corn Chowder and Southern Cornbread

Click on the recipe tab across the top or directly to your right.  I’ve just added one of our household staples, gluten-free corn chowder.  Combine it with the gluten-free southern cornbread and a salad and you’ve got a terrific meal in less than an hour.  It’s warm comfort on those cold February evenings.  This one rocks.  Enjoy!

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