I've had a few of you ask me about this
so I decided to just write a post about it.
Kinda lengthy, but it wouldn't be me if it wasn't right? ;)
Being a parent you are constantly faced with making decisions.
Hard, easy, quick, long-term.
However it may present itself, decisions are there. Everyday. No matter what.
And while most decisions for me have been pretty easy so far, some have not been so easy. Just in these past six months I was faced with my most difficult decision as a parent yet.
I'll give you some background story to get us on the same page, then we can move on from there....
...from about September '10 to January '11, since I had stopped breastfeeding, Quinn had had some pretty random, but persistent symptoms.
He had a rash on his chin and lower back. The rash on his back started out about the size of dime, but had recently grown to about the size of a sand dollar.
It didn't seem to really bother him and it seemed like
no matter what cream or ointment I tried it just didn't go away.
But honestly it wasn't alarming. Just kind of...there.
Another thing that bothered me were his teeth.
His front bottom two teeth have a brown discoloration right in the gum area.
I brush his teeth and it doesn't go away.
He didn't drink juice or have any candy/sweets so it was always just annoying to me. But something I figured would be more of a problem if it grew or grew with him in to his adult teeth.
Again, not alarming, but pretty annoying.
Also, Quinn had never really transitioned to "big boy poop".
When you're breastfeeding, baby's poop tends to be pretty loose,
(doysters, they're on a mostly liquid diet)
but when you switch to just table food it's supposed to firm up a little bit.
Be a little more "grown up", so to speak.
Well...not Quinny's. He had what I was calling diarrhea for a while, and I tried changing up things here and there, hoping for a change, but nothing really did the trick. Again, it didn't seem to bother him and he was never dehydrated from it, so life just went on.
-- Once I started to do some research, more and more symptoms came into view that didn't even really seem like symptoms to begin with. Over-excessive appetite. Tired and sleeping all the time. General fussiness. Bloated abdomen. Short in stature. --
And one of the last symptoms, probably the worst of all, was the screaming.
Quinn would just scream. All night long.
About every three hours he would scream and cry for about 30 minutes.
He didn't want mommy or daddy.
No milk, no water, no food.
Nothing.
He didn't even want to be held.
It seemed like he just needed to scream.
Talk about feeling helpless.
I just came to terms with the fact that this is just how Quinn is.
He's different and we can handle that.
I have mentioned Tim Ferriss several times around here. He's the author of The Four Hour Body and has very much influenced how Graham and I approach nutrition these days. Well, he has a blog that I like to read occasionally and one Friday afternoon I found myself browsing his site at nap time.
It was a guest post done by Robb Wolf and about half way down he has a subtitle called "Celiac". He states that it's a commonly known autoimmune disease and goes on to discuss it briefly. Well me being the "I am always learning and love to educate myself" person that I am, wanted to know more.
I had never heard of this commonly known disease.
So what did I do? Yup. I googled it. Celiac Disease.
I went to one of the first sites that popped up.
Honestly, I don't really remember which site I went to first...or which site was the one that made it click for me, but somewhere in all the reading and searching that started I knew it.
I knew it in my gut.
Quinn has Celiac disease.
I immediately texted Graham.
He was in class, but too started googling and researching on his phone while we frantically texted back and forth.
At first it didn't seem so bad.
Just a few minor diet adjustments. No biggie.
But then you start looking hard and getting into the real stuff.
If not addressed, this can cause real problems.
Celiac's disease is an autoimmune disease
that effects the small intestine.
In normal words:
gluten messes up these tiny hairs, called the villi, which help us digest our food.
When a person with CD eats gluten it destroys the villi and causes them to have pain in their abdomen and they are unable to digest the nutrients their body needs from the food. Causing them to be malnourished as long as gluten is present.
Gluten is a protein that helps make up/contained in
wheat, barley and rye.
So in Quinn's case.
Screaming = abdomen pain and hunger because he was not
getting enough nutrients that his growing body needed
Brown teeth = result of malnourishment
Rash = they don't know why it happens, but in a case of malnourishment it can pop up
Diarrhea = not digesting his food properly
I also read that even if a baby is eating gluten foods while he's breastfeeding, the breast milk itself is so healthy it can defer the symptoms from showing up and into a later date.
(makes you think twice about breastfeeding, doesn't it? serious superfood.)
So obviously, the timeline matched up perfectly.
And if not dealt with CD can cause and turn into all sorts of other problems.
Mostly other autoimmune problems.
Diabetes. Thyroid issues. Even lukemia and cancer.
Wake up call. This needs to be dealt with. Now.
So I spent all of naptime reading and googling and figuring
out
a plan of attack.
My plan was to go gluten free for one week and just see what happens.
If no change, then we know we're in the clear.
I also made an appointment with his pediatrician for Monday morning.
When the boys got up from their naps we went straight to Trader Joe's and picked up some snack foods.
I had read online that they were a great resource and had lots of different things to choose from.
(that didn't taste like cardboard)
So when I got there, I asked one of the sales associates to help me locate where the gluten free products were. He was so kind. He printed me off a list of everything in the store that was gluten free (GF). He showed me that on all the GF products they will have a little 'g' with a leaf letting you know it's a GF product. And he showed me some of the GF stuff he had tried and thought that a 16 month old might like and actually eat.
Awesome.
So bags in hand we headed home for new snacks at snacktime.
I had also read a good quote that started to shape the way I felt about CD :
When one person in the family get's CD
and goes gluten free,
the whole family goes gluten free.
So I knew it would be better to just give Lincoln and Quinn the same GF snacks and not try to keep things separate.
By the time we showed up to his appointment on Monday, he was already looking and sounding better.
He hadn't screamed in his sleep for three whole nights.
The rash on his back was significantly smaller and the rash on his chin completely gone.
And his poops were firmer.
If that's not an indicator I don't know what is.
So basically I went into the appointment already knowing the truth, but looking for a confirmation.
Boy, that didn't happen.
You see, I hadn't taken Quinn in for a while to see the pediatrician because at the time we didn't have health insurance and we have chosen not to vaccinate. Why pay $40 for a well visit just to have a doctor tell me what I already know. He's fine. He's a toddler.
And let me remind you, all of his symptoms had come at staggered times, were seemingly unrelated, and dealt with easily by Quinn himself. So I never felt an urgency to take him to the doctor.
As I sat there and explained to the doctor what I had read and what had been going on and what I had decided, things took a turn for the worse. He questioned me for not bringing him in when he had all these "supposed symptoms". And he went on to tell me that since he hadn't been seeing Quinn on a regular basis he cannot look at his chart and track his progress since he stopped breastfeeding.
He said, more than likely, I was jumping to conclusions and he probably didn't have CD. He said he also wouldn't test him for CD until we came for three more well visits.
I was shocked.
Disappointed and shocked.
I had always loved our pediatrician and couldn't believe what he was saying.
He told me the rash was due to drooling (chin) and the cold weather outside. (back)
The poops were a symptom of teething. (he actually wasn't teething at the time)
And the teeth were because I wasn't brushing well enough. (uhhh, ok?)
So I asked him why then things had gotten better in just the three days time if it wasn't CD?
He said he didn't know.
So I asked him if we do test him after a third well visit does he expect me to keep feeding him gluten during all that time? Because I couldn't do that in good conscience. Not knowing how fantastically he had responded to getting rid of it.
He said it was up to me, but not really necessary.
Hmph.
So there I was, faced with this monstrous decision.
Do I go with my gut? Make this hard on my family and go through this huge transition...?
Or listen to the doctor and just shrug things off....?
Of course (as you all know) I went with my gut.
I ended up scheduling a well visit for his 18 month check up and knew I'd be back with a different baby.
We went GF and never looked back...and when we went back two months later
the difference was phenomenal.
At 16 months he was in the 40th and 50th percentiles for his height and weight. Now I know that's nothing to be alarmed by, but when we went back
- just two months later -
we was in the 75th and 90th percentiles.
Huge change.
And not only that, but obviously happier and healthier.
I think maybe my pediatrician had gotten up on the wrong side of the bed that first visit because by the second visit he was singing a different tune.
He totally agreed that he could see big differences in Quinn, behaviorally and physically, and told me I had made the right choice by going GF. He said he would still like to have one more well visit before we do the test, but that we agreed there was either a strong gluten-intolerance present or CD.
Now, that was a bittersweet moment.
Everybody loves to be right, right?
But at the expense of your child?...never.
I was so happy to have made the right choices for Quinn and to be so dialed in to him as a person to know what he needed at just the glance of a blog post.
But my heart broke knowing that this would forever change his life.
People don't often realize how much gluten actually goes into stuff.
Until they hang out or cook with/for us!
Some things you may not know about gluten that I found quite shocking.
These are all items that contain gluten:
applesauce
bacon
deli meat
most peanut butters
all canned fruit and vegetables (with the exception of tomatoes and legumes)
soy sauce
ketchup (with the exception of the oh so expensive, Heinz)
and many more...
Gluten is used as a preservative in most foods. So while it may not be your obvious bread, they use wheat in many different forms to make foods last longer.
So you see, it's been a huge transition for us. But one I'd like to think has been for the better...
So he never gets to eat birthday cake.
Or eat normal pizza at a pizza party.
Or drink normal beer when he's older.
I'm sure he'll just be glad that we made the right choices for him so early on in his life.
At least I hope so.
All we can do is make the best decisions with the information we have now.
And hope that that's good enough.
{We plan to have Quinn tested one day, but not quite sure when that will be. It's quite invasive and might be difficult to explain what's going on to a 2 year old. His next check-up is in September and we'll get the doctor's opinion then.}
1 in 133 people have Celiac's Disease.
About 90% of people with CD don't know they have it.
If you have any similar symptoms or digestion issues I urge you to do some research for yourself.
This is serious and can easily be dealt with now.
Feel free to check out celiac.org for more information.
