A Gluten Free Future?

February 17, 2012

Turner Syndrome Awareness Fact:  Girls and women with Turner syndrome are at higher risk for developing celiac disease

According the Turner Syndrome Society:  "When people with celiac disease eat foods containing gluten, their immune system responds by attacking and damaging the villi. Villi, the fingerlike protrusions found on the small intestine, are needed for the body to absorb important nutrients."  Source

Last Saturday we tried something different with Lily.  We fed her some rice cereal.  We are really hoping this will provide just enough extra calories to bulk her up a little - help her gain a little weight.

I, of course, had high hopes going into feeding number one - she would eat right away and love it. After 4 very small spoonfuls, which apparently she was hiding in her cheeks, a big blob of rice cereal came out of her mouth, sort of like lava flowing out of a volcano. She immediately gave me a nasty look, and started fussing. Feeding #1 of cereal was over. 
Lily 1, Cereal 0

On Sunday, I knew we had to try again.  So late morning, I made up a few teaspoons of cereal.  We did have better luck.  She actually swallowed a few bites before she got mad and started pushing me away.  A few minutes after I took off her bib, I noticed cereal all over the front of her onesie.  Apparently she was still sneakily saving it up to spit out later.

Lily 2, Cereal 0

On Monday we informed Lily's daycare that she would like to try rice cereal there.  We did not inform them, however, that she seemed to be storing what was fed to her in her cheek to come out later, at random intervals.  Evil, or conveniently forgetful?  I'm not really sure.  I just wanted to see how they would fare.

When I picked her up her daily sheet read:  2 Tbsp of cereal - ate "some".  Of course the definition of "some" is pretty squishy, but I was at least happy to hear that she was interested.

Lily 2.5 Cereal .5

Tuesday the sheet read:  2 Tbsp of cereal - ate half.
Lily 3, Cereal 1

Wednesday it read:  2 Tbsp of cereal - ALL - Note (and I paraphrase here):  "Lily did not like how long it was taking me to feed her the cereal so she starting licking what had spilled off her bib."

Woo hoo - SCORE! 

That's my girl!  It is no secret this mama likes to eat - hence the 115 pound previous weight loss.  So, I was very proud!

Lily has made some awesome progress this week with eating, and I couldn't be happier.  I have, at the same time, noticed she hasn't been sleeping as well the last few nights, and yesterday I changed 4 poopy diapers between 5 pm and 10 pm!  She also has horrible diaper rash. 

And I went there...I immediately went to thinking that she may already be experiencing a gluten reaction (and yes most baby "rice" cereals actually do contain wheat).  Never mind that it could be something "normal" for a 5 month old.  Maybe her stomach is simply adjusting to a new food, or maybe she's started teething, and is experiencing the many poops and diaper rash of teething, just like her brother did. 
Its so hard to know.  Its hard to know if what my sweet girl is experiencing is a normal baby development thing, or if its the sign of something more serious.  And I know that for the future, my mind will probably always go "there"; always go to the worst case scenario.  After my pregnancy and Lily's diagnosis, it seems to be how I've been reprogrammed.
I've already thought about the "what ifs" of celiac disease.  She won't be able to eat cake at a birthday party, and snacks at daycare will be impossible.  She won't be able to have pizza with her friends, without at least planning ahead.  It makes me worried, but even more so, it makes me sad.  How much should I as a mother worry, and how much should I just chalk up to normal development?  And how can I possibly know?

I don't know.  I don't think anyone does with any child they raise.  And well, raising a child with some special needs, makes knowing even cloudier.  While, I don't know what the future will be in this regard for Lily, I do know that one of my dearest friends has Celiac Disease.  I know it hasn't been an easy journey for her, but I fed her dinner a couple of weeks ago at my house, and I do know that she had steak, a baked potato, and salad... just like all of us did.  She is coping... and if we have to we will too.  Its just another punch on our card of symptoms that could show up at any time. 
Every new symptom, every new sign, I over analyze.  Week after week I make myself just a little bit crazy waiting for the next shoe to drop. 

I desperately want for Lily to be one of the girls that only experiences mild Turner Syndrome symptoms, given some of what she has already been through in her short 5 months, but as soon as that thought crosses my head, I remember how incredibly lucky we are.  She doesn't have a heart defect and she doesn't have a kidney abnormality, like so many of her amazing Turner Syndrome sisters, and I know instantly that I would trade having to live gluten-free for a perfect heart and kidneys any day!

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  1. I love your recount of Lily versus the rice cereal. :) And I completely understand the over-analyzing of everything when raising a child with special needs. We are gluten free here (and dairy free) and though it felt daunting at first, it does get easy and just becomes life. It's been almost 5 years now (on the gluten free part). I can answer any questions if you ever wish (we are not celiac, at least not ever diagnosed; we had reasons to suspect gluten intolerance in most of us and "tested" via elimination).

  2. You probably already know this ... but just in case ... there is an additive that can be put in the formula to ramp up the calories. My sister is a NICU nurse and had suggested it for one of my friend's babies who wasn't growing. If you don't already know about it, contact me and I'll get specifics. SZurich99atgmaildotcom.


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