Tuesday, March 14, 2006

I HATE CELIAC DISEASE

Celiac Disease
A lifelong autoimmune intestinal disorder, found in individuals who are genetically susceptible. Damage to the mucosal surface of the small intestine is caused by an immunologically toxic reaction to the ingestion of gluten and interferes with the absorption of nutrients. Celiac Disease (CD) is unique in that a specific food component, gluten, has been identified as the trigger. Gluten is the common name for the offending proteins in specific cereal grains that are harmful to persons with CD. These proteins are found in all forms of wheat (including durum, semolina, spelt, kamut, einkorn, and faro), and related grains, rye, barley, and triticale and must be eliminated.

My son Jay has Celiac Disease.
I hate Celiac Disease. I HATE CELIAC DISEASE. I HATE CELIAC DISEASE.

Last night on VH-1 I was watching Kid Rock, Behind the Music. I am a multi-faceted woman.
Kid Rock used to hang out with this “little person” named Joe C. My kids called him Kid Rock’s midget. I’m not sure if that’s politically correct. Joe C was 3'9" and from our hometown. He died a few years ago. Local big news for a few minutes.
But last night there was a moment on VH-1 that made time freeze. Here it was; “And so Joe C finally lost his battle with Celiac Disease dying at age twenty six.”
I realized I was staring at the television and my mouth was hanging open. Celiac Disease isn’t fatal. Isn’t supposed to be fatal.
Why did Joe C die and why are they saying he died from Celiac Disease?
I sat there for a long time frozen and staring. Jay was in his room. The Mr. was gone, Mac was out. Just me trying to unparalyze myself.
I thought about going online and checking it out but I wasn’t prepared for the answers I might find. I went to bed. I woke up this morning and did what I didn’t want to do. I went online and checked it out. Joe C died. Some sites name Celiac Disease as cause of death, some say cause unspecified.
I was looking at my computer screen feeling my jaw clenching and my hands sweating and my brow furrowing and my skull starting to scream and tried to identify what was going on.Had I missed something in all my research? Had all the doctors I’ve spoken to hidden the truth? Is my son dying?
I was clicking and reading about a hundred miles an hour. I needed to get a grip, so I did. I slowed down to check myself, figure out what was going on. I was not afraid, not exactly. I was...angry. ANGRY. I am very good at angry.
But this is a different angry, what we used to call righteous anger. It’s powerful. I’m not going to try to quiet this anger. I’m embracing it. I am angry. Somebody better get scared. That means you devil.
So let me just tell you this, I am not about to lose my son. I am not about to accept sickness into my house. I am ticked off.
I’m glad I watched that show about Kid Rock. I’m glad I was reminded that I’m in a war zone. I had gotten a little too comfortable with this enemy in my house, Celiac Disease. Sure, I pray for Jay. For healing. I want him to be free of it. I ask people to pray. But I had stopped being angry. I was angry at first, but I got used to it.
Let me insert a disclaimer here, I realize that God chooses to heal some and not others. I accept that it is in His hands. I don’t think that if I pray a certain way for so many days or do it all “right” that I have a guarantee. But I sure as shootin’ am not going to wonder if my boy could’ve been healed. If hell wants to touch my kid with disease, it’s got a butt-kickin’ coming. Here I come.
When Jay first got sick three years ago, we didn’t know what the deal was. He was seriously ill and getting sicker fast. The doctor was openly alarmed. Lots of tests to look at some horrific possibilities like liver failure, lymphoma, leukemia. Turns out it was Celiac. All things considered, it was a bitter relief.
But I remember the day the blood work was due back I called the doctor’s office and the receptionist said that the doctor would speak to me the next day because he was busy. I asked her what the results were over the phone and she said, “Umm, abnormal. You better just talk to the doctor.”
Enter psycho-mom. That poor receptionist is probably still in therapy.
I ranted, raved and openly threatened to come to the office immediately and rip someone a new one and scare away every patient in the place. I promised that I was in my car and on my way.
“Hang on just one moment.”
And the doctor came on.
No one wants a psycho-mom in their place of business.
But see, that was back in the good old days of righteous anger, before complacency.
Well, brace yourself because psycho-mom is back and she is really mad this time. I’m going after hell with a new resolve. It’s a take-no-prisoners battle. It will last until Jay is healed or I breathe my last.
It’s time we started getting angry when satan tries to lay a hand on our families. It’s time we stopped accepting whatever garbage hell tosses onto our front lawns.
I’m going back in and I’m bringing my son out healthy and whole.
I don’t know what the date will be, but someday Jordan Trent Smith will not have Celiac Disease.
I’m recruiting you to the frontlines.
This soldier will not stand down any longer.

James 5:16 (New International Version)
16... The prayer of a righteous man is powerful and effective.


**Joe C appears to have died as a result of conditions that sometimes co-exist with Celiac, such as his short stature. While Celiac is more likely to happen with people dealing with these other conditions, Celiac does not cause those issues. The specifics of these other conditions in Joe C are not readily available. Most patients experience complete remission of Celiac through a strict gluten-free diet. Jay is one of those people and his self-discipline is awesome. He does not have any of those other more dangerous issues. He continues to claim his healing. So do we. To God be the Glory!

9 comments:

Birmingham Girl said...

Jordan, get ready to eat all the pizza your heart desires....this grandma is storming the gates of hell, and I WILL see your healing!!

Kell said...

Lots of prayers coming from me too!

KayMac said...

I have started praying for your son.

ellen said...

My son and daughter and I all have celiac disease. This was inspirational reading when I was feeling down about this horrible illness.

DreaDawn said...

Has there been any changes in your son's Celiac? I've read up that kids can out grow it, but mostly it's a life long thing. Curious because "they" (the docs) think my son may have it.

Rachel said...

I know this is a very old post. I found your blog via a google search on celiac. I noticed that you still post, and I'm hoping you get my comment via email.

My son -- 16 months old -- was just diagnosed with Celiac. Your story reminds me of my last month. In fact, it brought tears to my already teary eyes.

Thank you for sharing. Little did you know that what you wrote years ago has blessed me today.

Rachel

RighteousOne said...

This is Scary i just found out that i may have this disease and i am scared i am really scared but i know that jesus is with me and i ask your prayers.

RighteousOne said...

Someone please give me some advice i live in a country called dominica and it is not a very diverse country when dealing with gluten free diet i need soem help email me at douglasdeep@hotmail.com with your advice.

RighteousOne said...

oh im 16