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Tuesday, June 19, 2012

Celiac is Out, and so is Minnesota

Well, y'all... it's not Celiac.  The doctor called two days before we left for our beach vacation to assure us that there is no possible way for Squirt to have Celiac.  Not only did her initial blood tests come back negative, but so too did the endoscopy AND the genetic testing.

Which means - despite all evidence to the contrary - she doesn't have Celiac.

But she still has... something.

We know she's gluten-intolerant.  And we know she has some form of autoimmune disorder.  But it's not Celiac.  *sigh*  Despite these results we're heading to a celiac clinic in early July.  We're seeing Dr. Alessio Fasano's pediatric partner Dr. Anca Safta at The University of Maryland's Center for Celiac Research.  It's one of the top fifteen celiac medical facilities in the United States.

Can y'all believe it's located right in our backyard?

(Just one more reason why our family believes the hand of God guides the matching process.)

We're hopeful that Dr. Safta will be able to point us in the right direction.  Because maybe all of this truly is caused by a non-celiac form of gluten intolerance.  And by "all of this" I mean the other stuff, beyond the digestive issues and developmental delays that quickly (and definitively) disappeared within two months of gluten-free eating.  This "other stuff" includes elevated liver enzymes, an extremely low number of insulin-dependent growth hormone (IGH-1) and wonky thyroid levels, just to name a few.  Not to mention the renal reflux, the seizures and the fact that she's definitely immunocompromised.  So maybe it is *just* a severe form of gluten-intolerance.  Or maybe it's Hashimoto's or Lupus or something else we have yet to consider.  Or maybe...

*double sigh*

We are so thankful that God began guiding Squirt to our family the minute she entered care.

For so many reasons, including...

I spoke with my travelmate the Queen of Quincy a couple of weeks ago.  Because our family has planned - since last summer - to travel this summer to Middle of Nowhere Minnesota to visit Squirt's cribmate Little Lola Lopp and her sister/ the Tongginator's Tonggu buddy, Nixie Knox.  The Queen of Quincy and her husband Uncle Ubb have made the trek to see us twice now, you see, so it was definitely our turn.  Only Squirt has an extremely strict diet.  And she's got lots of as-yet-undiagnosed medical issues, for lack of a better term.  Our pediatrician... well... she heard about our future travel plans just days after Squirt's last seizure, so she asked me a few questions.  Dr. H is our neighbor, too, and she remembered that our travelmates live in a - shall we say - rural area of Minnesota.  Dr. H wanted answers before she gave the okay for travel.

So I called up the Queen of Quincy.

And I asked her a few questions, as awkward as that felt.

Turns out that she and Uncle Ubb felt oh-so-relieved that I called.  Because they'd been fretting for weeks about how they'd be able to feed us.  And about what might happen if Squirt has another medical emergency.  Because y'all?  They live 90 miles from the nearest hospital.  Ninety! Miles!  Which means any medical emergency requiring more than a blood draw or a catheter involves a medical airlift.

Be still my heart.

This is why I believe God led Squirt to our family once she no longer had a family to call her own.  Because Squirt and Little Lola Lopp were cribmates, y'all.  They are less than a month apart in age.  And the child with gluten-intolerance, some type of autoimmune disorder and a whole host of medical issues was adopted by the family who lives minutes from the Celiac Clinic at the University of Maryland... less than an hour from both Hopkins and the Children's National Medical Center... and less than two hours from NIH.  And little Lola Lopp?  The oh-so-healthy and extremely active little Lola Lopp?  She was matched with the very laid-back Queen of Quincy and Uncle Ubb, and now lives in the middle of Farm County USA with plenty of room to run around.

God?  Is such a planner.

And our travelmates are awesome.

Even though it's our turn, they are graciously making the trek - yet again - to come visit us on our home turf.  Because the only thing preventing us from going to their town is my momma's fear (oh, and our pediatrician's wince of discomfort).  We're so excited we'll get to see them in early August.  The Tongginator is thrilled that her Tonggu buddy Nixie Knox is coming.  Little Squirt, being one, is relatively clueless, at least right now.  I wonder if Squirt and Little Lola Lopp will remember one another?

I guess we'll see soon enough.

Only 49 days to go.


Kim K. said...

Thinking of you...sending you lots of prayers.

The Gang's Momma! said...

What an amazing testimony to the fact that God is IN.THE.DETAILS. I needed it this a.m. - in our own circumstance it feels as if details are getting overlooked by human error and our journey is being negatively affected by that. But He knows. And I needed that reminder. Thanks.

And I'm so happy for you, that you have friends that don't keep track of who's turn it is. Friends like those are hard to come by and worth the investment every time. You are blessed, indeed :)

Casa Bicicleta said...

Not Celiac.

Oh man. This is sounding oh so familiar. Autoimmune but not Celiac.

Picture me scratching my head.

Stefanie said...

Wow. I can't imagine how it must feel, at this point in the journey, to hear it's NOT Celiac. Will pray for you and sweet Squirt, that y'all will find some answers, and that they will be best-case-scenario kind of answers :)
And, amen! God is a God of details, isn't He? Amazing how He works it all out, when we trust our plans to Him!

Half Gaelic, Half Garlic! said...

Oh my gosh, it is NOT Celiac?? Back to the drawing board....... I cannot imagine how frustrated you feel, but it does sound like you are getting the best care possible. Amazing that these specialists are right in your backyard, so to speak!!!

Have thought of you a lot over the last few weeks and will continue to pray that the answers will come soon!!

Hang in there Momma!!!



Tricia said...

I am so sorry.... the not knowing and the constant doctors and all that goes along with it is hard... you are all in my prayers.

That said... isn't God amazing?!? How true that He had His hand on Squirt long before any human knew any of this.

Take care of you and your babies and don't worry about the need to reciprocate.... remember what Dr. Suess said, "Those who matter don't mind and those who mind don't matter."

LucisMomma said...

God's planning truly is amazing.

I am convinced that gluten (modern-day gluten; it seems to have really changed over the past 100 years--the book Wheat Belly is a good one to explain that)--the more I learn about gluten, the more I see it involved in so many, many illnesses.

So sorry you don't have a definitive answer yet.

Debby said...

I think the little ones will always have a bond.....more like a feeling.....it is amazing how that happens but it does. I used to see it with my adoptive son and his borth sister.
I will be interested in seeing what the doctors say. I have celiac. I tested negative to the blood work but not to the endoscopy. I had the endoscopy and a colonoscopy just last week. My oxygen levels fell so low they couldn't sedate me. Horrifice. But they found healing in my esp. and colon. I am so excited.
Good luck. Glad Squirt has yo to take care of her.

Shecki Grtlyblesd said...

So glad you'll still be able to connect with your special friends in the safety of your own environment.

Has FPIES been ruled out? A child in our homeschool co op has FPIES and the struggles sound similar. A good reminder for me to be grateful when my kids are eating everything in sight.

Barbaloot said...

Hmmm, my son is also gluten intolerant. I have not done any testing yet aside from noticing that when he had gluten, he had constant diarrhea and when he was gluten-free, it cleared up.

I have a theory. I'm wheat-intolerant myself. My mother followed the pediatrician's instructions and started me on a wheat cereal when I was six weeks old. She says I was a very difficult baby with such bad colic they once took me the emergency room in the middle of the night and begged the hospital to admit me. (Of course, they were laughed out of the place and dismissed as silly new parents.)

My son, who is from Ethiopia, was given a wheat-based cereal at six or eight weeks of age. He became ill in various ways that may or may not be related to reacting to the cereal, including protein energy malnutrition and failure to thrive.

I have to suspect that giving infants cereal at such a young age, when really ideally they would be breastfeeding or at least on formula, damages the body. It's just too weird that we had the same crazy early wheat exposure in such different circumstances and have pretty much the same food intolerance.

My local doctors roll their eyes at this, but I wonder if you've heard any thing like it. Apparently there are some studies out there that support the theory.

Shari said...

I've often said the same thing about the matching process...I may not have been God's first choice for Amelia but he made darn sure she and her friends got.the best 2nd match possible.
I hope you find answers soon!

Mrs. C said...

Praying you find answers soon. Sierra has been sick off and on for almost 2 years and we went gluten free on top of several other food allergies and we are just now starting to see some improvement.

Aus said...

Morning TM - well OK - glad it's not C's, but I hate the "non-diagonses diagnoses"! It'll come eventually - or it'll clear on its own - time and Faith....

And speaking of Faith - remember that God IS in the details (GM said that very well) - but it takes the Faithful to find God in there - k? Thanks for being among the Faithful!

hugs - aus and co.

Anonymous said...

Eliminate Dairy...Asians are often lactose intolerant.

Have her tested for delayed food allergies.
Delayed Food Allergy (IgG)

Contact Better Health USA

These people are really on the ball and helped us solve a similar mystery.

You can call and talk with them. They send you the blood drawl kit and then arrange for someone to come and drawl your blood.

Awesome service. Not all labs are created equal and you can test negative with one lab and positive with another.

They have phone support too.

I am allergic to wheat and not gluten. So it might be one of the food you eliminated.