Monday, August 19, 2013

Piper's New Journey

Many of you know that we have been going through the process lately to have Piper tested to determine if she has Celiac's disease.  However, this journey has been long coming.  Many of you have asked what has been going on and I've been slow to report anything until we had all the answers, which we received today, so here's the long and short of it, from the beginning.

Three years ago, Piper was 2, almost 3, and was having some major digestive issues.  We were in the midst of potty training, so her issues (let's just leave it at that) were very obvious and very troublesome.  I took her to the pediatrician and she ran an allergy panel, which showed nothing food related, save a VERY low level reaction to wheat.  This isn't something that isn't totally abnormal for a child that age to appear, so no one even thought twice about it.  Jes has always had issues with milk, so I decided to start there and eliminate milk from her diet.

Miraculously, her issues became manageable, but never completely resolved.

As Piper aged, she began to constantly complain of a stomach ache and would cease eating for days on end.  Naturally, this was very disturbing to us, but we thought it was typical 3-4 year old behavior and her asserting her will, trying to control one of the only things she was in control of.  Needless to say, mealtime became a struggle and a time of day that we all dreaded.

This past May, I took Piper into the doctor for what I thought was a sinus infection.  We left with a strep diagnosis and strict instructions to rest.  That turned out to be a non-issue, as my normally happy, bouncy, funny, full of life 4 year old turned into a non-eating, sleeping all the time (like 18 out of 24 hours a day), grouchy, difficult to be around child.  I knew in my gut that something was amiss and was determined to get to the bottom of it.

At the end of June, Piper had her 5 year well child check up where we discovered that she had grown a bit in height, but had actually lost weight and was lighter than she was at 4.  If you know Piper, she really couldn't afford to have lost weight, much less grown at all upward and not gained a pound.

Along with all the symptoms that Piper had been having, the pediatrician decided to run a full Celiac's panel on her and see what that brought about.

About a week later, I got a phone call informing me that P's blood work showed that she had the antibodies (these show that the body is actively attacking something, in this case, the lining of her small intestine), which set the wheels in motion to have all the testing done.

In mid-July, Piper had an endoscopy, where they took biopsies as well as drawing an extensive blood panel to check for thyroid issues (one can't be too careful with her genetic pool).  Those results came back as showing mild inflammation, but normal thyroid function.

So, 2 weeks ago, we drew more blood to test Piper for the gene and see if she has genetically inherited the predisposition for this disease.  Today, we received word that Piper has 1 copy of the gene, so the conclusion is that she does, in fact, have Celiac's disease.

Many people think that Celiac's is an allergic reaction to wheat, when in reality, it is gluten (a thickener found in most every product, food related and not) that causes an auto immune response within the body.  So, basically, when a person with Celiac's disease eats something with gluten in it, their body thinks that their small intestine is a foreign body and starts to attack it to destroy it.  Almost all absorption of nutrients happens in the small intestine, which is a very cantankerous organ, so if there is even any mild inflammation, that drastically reduces or even eliminates nutrient absorption.  In a growing child, that's a really problem.

So, that's what was going on inside my poor baby's body.  I feel a certain amount of guilt that we didn't know all these years, but am thankful that we did the testing now and have a solid answer.  Piper has been gluten free for about 2 weeks now and she doesn't complain near as much of her stomach hurting and when she does I think it's her being hesitant about eating in general.  She eats small amounts but much, much more than before.  She's actually hungry which is not something we've experience with her much in all her years!  Her mood has improved, she's more alert, and sleeping less (but normal amounts for a 5 year old).

All in all, this is not the end of the world, but will certainly be a journey and learning experience for my girl and I.

Oh, and as a side note, Piper's GI doctor is highly suspect that I might have Celiac's too.  So, this might get even more interesting...

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