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Tuesday, April 10, 2012

Okay, So Maybe We Might Possibly Have a Diagnosis

I think this blog might be evolving and changing.  I've felt the urge to blog several times in the last few weeks, but it's never really about adoption.  And since this is sort of known as an adoption blog... well... I haven't actually sat down to type.  After this last week I decided whatever... I'm just gonna write.  It may not be funny.  It may not be about adoption.

But it will be something.

We think we've figured out what might possibly be wrong with Squirt.  Five doctors and dozens of medical tests later, we still didn't have a clue.  Then I started venturing forth into the scary world of (no! don't fly toward the light!) Web MD.  And I learned that sometimes it can actually be a good place to visit.  Who knew?!?!!  After some light reading (ha!), I reached out to my real-life friend Georgia Peach, who talked me through some basics.  And oh my lands, y'all, did it all start to come together for me.  Enough that our pediatrician will be testing Squirt for this condition in a few weeks.  We'd do it now, but three weeks ago little Squirt gave up seven vials of blood in one sitting for other tests, so she doesn't have any blood to spare at the moment.

Cue drum roll please...

We think Squirt might have Celiac Disease.  Which means it WAS all about the pee.  And the poop.

(I feel completely vindicated.)

I wasn't grossing y'all out for no reason with my elimination fascination.  I wasn't waxing non-lyrical about endless streams of pee just because.  My brain wasn't turning to mommy mush, too overly focused on pee and poop and drool.  There was a REASON for it all.  Because even though we don't know for sure if it's Celiac or not, we do know for sure that Squirt is - at the very least - severely gluten intolerant.  And we know this because we've eliminated most glutens from her diet.

Oh my lands, y'all, what a difference!

But yes, we're still torturing her with at least one serving of gluten a day.  That's because - if it is Celiac - we need to know.  Celiac is so much more than gluten-intolerance.  And if we completely eliminate gluten from her diet, tests can come back with a false negative.  So yes, we are willingly torturing our child... at least for the next few weeks.

And oh my lands, does she sound like I'm torturing her right this very minute.  Because the screaming, oh! the screaming!  She pretty much loathes it when I'm on the computer.  But I've decided that she's been home long enough now that 20 minutes a day (or every other day) is not gonna hinder her attachment to me.

Although it may give her a conniption.

And me a migrane.

But whatever.  I've missed y'all.  Fill me in on your lives and what I've missed.


Nikki said...

You must be relieved to have a diagnosis. Good luck!

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Debby said...

I have Celiac and so does my son. The bad part about the blood work is that it almost always comes back negative. I had two positive upper endoscopies but my blood work was negative as was my son's.
A GF diet is hard to follow but they are coming out with more and more products. It is a disease that sometimes isn't very healthy. Celiac can have many symptoms. If it has helped taken the gluten away, after the testing regardless of the results, still keep it away from her.
Good luck and give that baby a (((((HUG))))) from me.

Diane said...

I am gluten intolerant, and I believe my son has Celiac's. His blood work came back negative as well, but we opted not to put him through the endoscopy for several reasons. We changed his diet to the SCD diet described in the book entitled, Breaking The Vicious Cycle by Elaine Gotschall. He is now well. Miraculous improvement.
Blessings to you as you search for answers for your sweet little one!

Robin said...

So glad you may finally have an answer. Also glad you're going to blog again. I've missed your posts!

Nicole said...

Very well could be. I have several friends with kids with it. I think the food market has clued in a great bit.

Desiree' said...

gluten intolerant here also...it's not fun but there are quite a few good websites and cookbooks out there. Most restautants will prepare GF food if you ask~
If you need help let me know :)

Myrnie said...

HOOOOOOORRRRAAAAAAY! Diagnoses are a wonderful thing! (Let's see....husband got fired, started a new business, (I had a baby), sold our part of the business, unemployment, and new job. And home schooling. Yes.) And YES- blogs evolve! I've been struggling with what to write in mine, but it's good to just sit down and write! I'm just here to see YOU :)

K and/or K said...

Glad to hear you are moving in the direction of an answer to the mystery! My best friend has celiac and is happy as a lark now that she has been properly diagnosed and adjusted to her new diet and hygiene product lifestyle.

What is new with me? My daughter has been here almost 3 months! Life with a toddler is going so well, I have to pinch myself, praise the Lord, and knock on wood all at the same time!

Sherri said...

Celiac is SO do-able! I have a friend whose child is Type I diabetic and has celiac too. It's a very steep learning curve, but you'll rise to the occasion. Separate toasters, home made goldfish crackers, fun stuff like that!

Your blog can become a living with someone with celiac blog.


I'm happy to see things falling into place (hopefully).

As for me, I have one son who is waiting for med school acceptance, and another son who is Goofy. Literally. At Disney World. Oh, how each child is different.

I'm glad you're back. If only for today.

Jamey... said...

Well, while this is never a good diagnosis, but I can't think of another mama more equipped to deal with this than you.

We had Pickle tested for this awhile ago. His came back negative and it seemed like the symptoms disappeared, but now we're seeing a resurgence so as soon as we're settled with our our new insurance we're going to looking into it again.

Kim K. said...

Glad to know that you have answers. Hang in there. Sounds like you have good resources and support available. Best wishes with all your new transitions.

Casa Bicicleta said...

Holy smokes. You know that's what they thought my DD had when she had the year of medical mysteries, right? Do you remember that? Email me if you have time, I'll refresh your memory. I know the exact path you are on. We had our negative results confirmed through DNA.
Good luck.

autumnesf said...

another with glutton intolerance here

Jennifer said...

Well, first let me just say that I'm glad you are still alive. It had been so long I was really starting to get worried. I don't even know your real name but God knows who I'm talking about when I pray for TongguMomma!

Second, I'm glad you are further down the path of answers. I know a few adults with Celiac and they are thriving!

Thanks for the update. Oh, and I'd still read your blog even if you didn't write about adoption.

LucisMomma said...

Even though it's rough on her body, I would feed her more than one serving a day to make sure you get a true test of her cilia.

Even if it does show no celiac, being gluten free is not so bad (there are lots of substitutes nowadays), and it certainly won't hurt her body (and as you noticed, it helps her so much).

I myself am gluten intolerant and I suspect my middle child is celiac. We just don't do gluten anymore at my house.

Glad you went to WebMD. :) I've diagnosed all but two ailments the kids and I've had in the past 20 years. :) Knew it before we went to the doc, and DH is just amazed.

LucisMomma said...

PS--I do miss your Sunday Linkage posts. Maybe one of them once in a while? Maybe once a month or something.

Blessings upon you, Mama T! Totally enjoy your writing and learning more about mothering.

the meaklims said...

I've heard even with tormenting your body and forcing it to eat gluten, you can still get a false negative. Darn.

Did you know we got our referral for another little girl? Yes, there is a new big sister on the block and we are ***SQUEAL*** very very excited. :)

Hope you get some answers real soon. We've missed you, terribly.


prechrswife said...

Glad to hear that you may have some answers. We have a family in our church with several adult members who have celiac, and they do just fine.

As for what is new with us...I've been substitute teaching in K's preK class while her teacher is on maternity leave and will be teaching again (3rd grade) full time this fall.

And Sherri's comment about her med student and Goofy literally cracked me up. :-)

Sunday Taylor said...

It is crazy how knowing WHAT something is wrong with a kid can be such a relief to us moms!

Sharie said...

All I have to say is HELLO!
and if there is anyone equipped to deal with Celiacs it is you my friend...

nora said...

The last thing you want is one more random commentor telling you about having Celiac, but if it helps I would recommend doing the saliva test and a biopsy. I personally would skip the blood tests. I was one of the youngest and earliest cases that was tested at 2 years old in the 70's and had a number of journal articles written on. Its totally doable and my guess is that you'll be able to cope well. I would although be lsightly surprised based ont he genetic make-up, since Celiac disease is mostly from English and Scottish European linneages.

Cedar said...

Glad to have you back :) I don't care what you right about...and I don't think you can help being a little funny. It sounds like you are on a good track with Squirt and I'm glad.

What's new here is not what should be new...we got our TA March 22nd, but they wouldn't add us to the April 1st group...so we travel May 2nd...only 3 weeks now. I spend most my days keeping busy with the kids, taking pictures, packing, and praying for the ability to let go of my anger at my agency.

Shecki Grtlyblesd said...

Good to see you posting again! I was wondering how you guys were doing.

scooping it up said...

Good luck!! That seems like an awfully tricky lifestyle/diet change. But answers are always better than "what the crap is wrong with my kid." -- we are adopting again. There. long story short. :)

Beyond Normal Mom said...

Oh, friend. I hope this is your answer. We have been playing with gluten/wheat elimination also. I just see so much research to point to it's benefits. It's really worth it. I'm sure I do not have celiac, but I can certainly tell the difference in myself! We've also been reducing dairy and I KNOW that I can now only handle a bit at a time of that. Dietary restrictions aren't fun, but it may be so worth it.

Claudia said...

my niece has celiac. Once my sister changed her diet (she's one of the ones who can't have ANY gluten at ALL) she became a different child. Total step change in her health. I hope this change improves Squirt's life as much as it improved hers - really glad to hear that she's already improving!