This is an informative and eye-opening interview (2 pt)  with Dr. Stefano Guandalini, MD, Medical Director of the University of Chicago Celiac Disease Center.  
I continue to hope that there will be an actual cure for Celiacs in Libby's lifetime!  This interview furthers that hope…


http://sciencelife.uchospitals.edu/2014/02/05/dr-faq-stefano-guandalini-on-the-rise-of-celiac-disease/

http://sciencelife.uchospitals.edu/2014/02/12/dr-faq-stefano-guandalini-on-the-future-of-celiac-disease-treatment/

Celiac Stats

I am continually discovering things that astound me.  These days, most of these 'things' seem to involve Celiac disease and/or gluten intolerance... or somewhere in between.
This is just a sampling:

Data

Between 5% and 10% of all people may suffer from a gluten sensitivity of some form.

1 out of every 133 Americans (about 3 million people) have Celiac Disease

97% of Americans estimated to have Celiac Disease are not diagnosed

Celiac Disease has over 300 known symptoms

30% of the US Population is estimated to have the genes necessary for CD

The U.S. Department of Agriculture projects that the Gluten Free industries revenues will reach $1.9 Billion by 2012

Gluten free foods are, on average, 242% more expensive then their non-GF counterparts

There aer currently 0 drugs available to treat Celiac Disease

People with CD dine out 80% less than they used to before diagnosis and believe less than 10% of eating establishments have a ‘very good’ or ‘good’ understanding of GF diets.

The average cost of a misdiagnosis is $5,000 – $12,000 per person per year.

Celiac disease is a hereditary condition and if you have celiac disease, you can expect that 4 to 12% of your first-degree relatives will also have the condition.

60% of children and 41% of adults diagnosed during the study were asymptomatic

Statistic Verification

Source: National Institutes of Health, Univ. of Chicago Celiac Disease Center

Date Verified: 3.19.2012

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What's the point?

As much as I'd love to start today's blog with gushing and profuse apologies to all of you that follow my blog for my absence... that might be just a little optimistic. The truth is that I haven't written in months because I lost focus and began to question why I was blogging in the first place.  To satisfy my own selfish needs?  To tell my daughter's story?  To educate the public about Celiac disease?  To vent and rage against the machine? er,  I mean against this stupid disease?  To develop and share recipes? To hear myself think?  Maybe a bit of everything. After all, who doesn't blog these days? I almost hated to tell people that I had a blog.  It seemed ridiculously self absorbed to think that I would write something and tell people to go and read it!  So I stopped.  I kept thinking about it however.  But I wanted it to have a purpose, a point.  I'm not sure if I have one even now, but I at least know that I want one.  That is a start. So I decided to begin again.

My daughter's disease is ever present in her life, in my life and in our family's life.  It guides us daily. It holds her back from things.  It holds us back.  It makes her think twice before she does what most people do without thinking once!  It educates her.  She educates me.  It makes her very angry sometimes. It makes me very angry always. It makes me feverishly read daily anything I can on Celiacs. But what do we do with this?  We live with it.  And living with it simply means that we eat differently. Differently than we used to certainly, and differently than most other families. And that is okay. Really. It's still hard but it could be worse. Much worse. We are lucky. Lucky beyond words to have her. Lucky and thankful to have these two lovely, funny, witty and crazy little girls in our lives.  So we go forward. 

My goal, at least with my current mindset, is to focus on recipes, restaurants (ruthlessly!), current findings, helpful information and of course, sharing still, our story as a family living gluten free out of necessity and not by choice.  

I hope you continue to follow us and check back often.

Next!

To follow up on Libby's fructose is it? isn't it?...
It isn't!  Good news to be sure, but now we are going to test for lactose intolerance.  I understand that lactose intolerance is much more likely to be the culprit of her daily stomach aches, and while it will be wonderful to finally figure this out and give her some relief,  oh how I dread having another food group to circumvent!  Milk, cheese, butter...

I want to tell you about this little girl of ours.   This test was a 12 hour fast followed by a four hour long waiting game at Children's.  Blow into a tube attached to a baggie for the baseline measurement.  Come back in an hour.  Blow again.  Go, come back, blow.  Go, come back, blow.  Go, come back, blow and you're done!  A very long morning without food or drink, except small sips of water.  She hadn't eaten since 8pm the night before.  She spent the morning chatting, walking around the ground's of the hospital, reading a little, talking a lot.  Never once complaining.  Never once said she was hungry, thirsty, annoyed, pissed, sad, tired.  Now me?... I was all of those things.   But looking down at her genuinely happy, smiling little face and holding her hand throughout the day was the inspiration I needed to suck it up and go with the flow.  As we were sitting on the happy metal frogs that are strewn all over the grounds at Children's she looked at me and said, "Mommy, I just love hanging out with you."  And I you, little girl.

Like Celiacs isn't enough?!

Well, i never meant to be away for the entire summer... but there you are.  I was.  I was with my fun, energetic, amazing girls having a wonderful time.  No trips to the Grand Canyon or Europe.  No weeklong camps or time in front of the TV... just swimming and talking and laughing our way through the summer.  I always hate when they go back to school.  Honestly hate it!  My life is simply better with them present.  But thankfully they are both happy and settling into 3rd and 5th grade.  I am back to my life between the hours of 8 and 3.  There is always much to do and there never seems to be enough time.

Three weeks ago, Libby had the 3rd of her 6-month check ups and unfortunately (damn damn DAMN!) her numbers went up.  We started 18 months ago with a 140.  Her next was 67.  Her next one was a beautiful 3!!  And this last one was a 29.  WHY? HOW? Damn!!  I can't imagine being more vigilant.  I simply cannot be!  It's not possible.  Is it?

Here is where we are right now.  She has never actually had a day without a stomachache.  She lives like this.  It breaks my heart.  It infuriates her.  It baffles us all.  I asked about the possibility of her being fructose or lactose intolerant.  Her Dr. agrees that there is obviously something else going on besides 'just' having Celiac disease.  Like this child needs more to deal with.  So next week she will be tested for fructose intolerance.   What will it show?  That she now,  in addition to having her diet restricted to all things gluten free,  won't be able to eat all fruits and many vegetables!?  I can't imagine it.  If that comes back okay, then we go for the lactose.  Which evil do we hope for?  Libby herself is pulling for the lactose.  Never a big fan of milk.   The 'Big Picture' has never meant much to her.  Probably better that way as it can be pretty overwhelming.

So, I will let you know what we find out and where we go from here.

Thanks for listening!

Making it Clear

Just when you think you have it covered... you really don't.  We have a local sushi place in walking distance from our house.  Sabuku Sushi  http://sabukusushi.com  on Adams.  It is really very good.  The fish is amazingly fresh and the sushi chef is quite proud of this and does some pretty interesting rolls.   Now, for someone with Celiacs, sushi is a mixed bag of delight and possible disaster.  On Saturday we encountered both.

When Libby surprised us a few months ago and said she wanted to try (yet again) sushi we jumped at the chance.  Eleri has always liked fish and loves (gulp!) a good California roll.  Libby not so much.  Hugh and I had been to Sabuku twice before on our own.  Once when they first opened (not impressed) and then a few months ago (very impressed!).  It seems they needed a little time to get their bearings and service up to a professional level. We inquired as to whether they would/could accommodate allergies, in particular Celiacs and gluten intolerance.  We were told yes.  The chef was very sure of his commitment to providing for 'special' diets.

We took Libby and made a point of saying "Celiacs", "NO gluten" and all of the words that keep Libby safe.  She ordered a bowl of rice topped with sliced avocado and the server offered that maybe she could have an avocado and cucumber roll.  Absolutely!  They brought over a well marked vessel of tamari which is the Celiacs go-to because soy sauce contains gluten and is an absolute no-no.  Tamari is naturally GF.  They knew this.  Feeling good here.  Starting to relax.  Libby happy.  Eleri happy with her CA roll.  Hugh and I very happy eating our really, really fresh sushi.  So it became a safe restaurant for us.

Then came last Saturday.  Same routine.  Sit down.  Play with the maddeningly hard to use metal chopsticks.  Drink the lovely cucumber water they bring in a huge carafe to the table.  Then the never before seen server comes over.  He mumbles something we think is some sort of greeting.  We greet him back with a hearty "hmmmphjjl."  He smiles.  We smile.  I tell him about Libby's need to have her meal gluten free.  He smiles and nods.  I say twice  "this is a very serious allergy (thinking Celiac wouldn't mean much to him) and please be sure the chef knows." More hmmmphjjl-ing.

We order.  The rice bowls come finally and they look great.  We remind him about the tamari.  Then out come the girl's rolls... on the same plate!  Eleri's gluten laden CA roll (the crappy crab has gluten) and Libby's GF roll... sitting right next to each other.  I just stare at it.  I am trying to decide if this is okay.  It clearly is not from everything I read and what her doctor has said.  Cross contamination is just not worth the risk.

I call the server (generous term here) over and tell him the problem.  He is stumped.  I am getting annoyed.  He takes it back to the chef.  I can see the chef is a little annoyed as he pitches the roll in the trash.  Hugh is now really annoyed so up he gets and talks to the owner who happened to be there.  It didn't go especially well at first but only because Hugh's delivery was possibly a bit on the offensive and the owner's was a little on the defensive.  Both are understandable.

The chef looked over at me during this exchange, to where the girls and I sat a table, and said "it's no problem!" He said that now that he understood the severity, then he would use the separate board and knife he uses for gluten free rolls.  If he had known she had Celiacs, he would have been more vigilant.  Now everyone is looking at us.  ugh!  Libby keeps asking what is wrong.  This is precisely what we strive to avoid.  A scene that centers around one of our children. I quietly thanked the chef from my seat and he said 'just tell me next time.'  I said, again quietly, that I had indeed told the server.  Chef said "ok, if I had known then..." Again, I said, from my seat, that I did tell the server!  Then the owner came over to make it right.  Hugh apologized for his delivery and owner apologized for his initial reaction.  Everyone falling all over themselves making nice.   Libby just simply said  "why can't someone just tell me what is going on?"

Sweet little girl just wants to eat some rice!

As we walked out of the restaurant the chef looked up and smiled and said "next time i'll know!"  And next time I will make it very clear that we have a daughter who has Celiac disease.

What a Tart!

And I do mean WHAT A TART!

Goat Cheese and Basil Tart with Cheese Crust

I am always looking to create (or steal from someone else) a great recipe.  I'll be short and sweet today and just tell you that I made the most amazing GF savory tart last night with what I consider a minimal of effort.  This one is not mine but from a wonderful collection of GF recipes from Shauna at http://glutenfreegirl.com.  She is a wonderful blogger and a fellow (to Libby) Celiac.  This is by no means just a 'gluten free' tart.  It is absolutely delicious and would WOW anyone, gluten free or not.  I made a few tweaks (not that it needed it but I just have to do it) and here it is...

60 grams GF flour blend (I only now use the blend from http://glutenfreegirl.com)
1 teaspoon fine sea salt
40 grams almond meal/flour
1/2 teaspoon guar gum
2 cups finely grated hard cheese such as Romano or Parmesan 
4 tablespoons (57 grams) unsalted butter, frozen then cut into 1/2-inch bits or grated on lg box grater
2 tablespoons ice water   note~ Fill a small bowl or ramekin with filtered water, add a few ice cubes     before beginning and it will be nice and cold by the time you need it.
250 grams soft goat cheese (I used a honey Chèvre that I just found at our Farmer's Market)
10-12 basil leaves, rolled like a cigar and sliced thinly or just rip it into bits
2 large, ripe heirloom tomatoes, sliced thickly
Olive oil to sprinkle on just before serving
Sprinkling of lovely sea salt 

Preheat oven to 375

In a food processor, add the flour, salt, almond meal, guar gum, and cheese and pulse until blended.  Add the butter and quickly pulse until butter resembles small peas.  Remember, there is no gluten so you needn't be afraid of 'over working' the dough.  You do however, want to avoid over handling the dough because of the butter.  You want it to remain visible and as cold as possible.

Here is where restraint comes in to this wonderful process... the ice water.  Add only a tablespoon at a time and go slowly, adding it through the feed tube while pulsing.  This dough should be dry and never sticky.  It should come together when you pinch it between thumb and finger but not stick to your fingers.

Turn dough into a fluted removable bottomed pan, and pressing evenly, push dough up the sides and into bottom of the pan.  

Pop into freezer for maybe 30 mins.  15 if you are in a rush.  Overnight if you are a type A overachieving plan aheader.

Remove from freezer when you are ready to bake the shell and prick the bottom all over with a fork to prevent bubbling up while baking.  Bake for 15 mins and check to see if it is doing the naughty and bubbling up.  If it is, poke it a few more times.  Continue to bake 10-15 minutes more until nicely browned.  Cool in pan.

Mix the goat cheese and basil and a dash of sea salt together and spread carefully into the cooled baked shell.  Carefully as not to pull up bits of the crust.  Add sliced tomatoes on top of goat cheese and splash a bit of olive oil over the tomatoes and finish with a light sprinkle of sea salt.  

Optional~ Run the tart under the broiler a few times if desired to soften and warm up the tomatoes... depending on your mood.  It is equally delicious with the tomatoes au naturel.  My photo clearly shows the darkened edges of the 'run under the broiler'.  Next time i'll run faster!  The darker the crust though, the deeper and richer the flavor.

We four ate the entire thing with a simple butter lettuce salad for dinner last night.  The both of us, the tart and I,  were justifiably fawned over!