Melissa Writes

I’m having some major issues this afternoon.  I half way skimmed an article that came through my twitter stream this morning.  I blew off as an uneducated post and went on.  Then came the flood of people up in arms over said article.  Ok, now I had to go back and read it and the comments to it.  Now I’m upset.  You can read it here.

Idiots, all of them are idiots, well maybe not all of them but a good stinking portion of them are.  I don’t know one person suffering from Celiac that if given the choice wouldn’t give it all up for a slice of pizza and a cold beer from any place they wanted it from.  It’s not about moderation.  It’s not some fad diet.  It sure the hell isn’t because Elizabeth Hasselback wrote a stinking book!!!  It’s a real issue that effects not only the suffer but also the family of the person with Celiac.

Five years ago I met my husband, he told me he had Celiac.  I smiled nodded my head and went on about my business.  I later asked what that meant and he told me he couldn’t eat wheat but he wasn’t following the diet.  Oh ok, no biggie then.  I found out that he didn’t like a lot of my favorite things, he didn’t like pasta, he only ate pizza once in a great while, sandwiches were evil unless they were made from cracker like bread and loaded with as much filling as it could hold.  I could adjust, he loved my chicken and noodles, ate my baked foods like they were going out of style, and thought fry bread was the greatest thing every.  We got married and six months later we were in the doctor’s office.

It was the scariest thing in my life, ok not really but it ranked right up there.  One Sunday while I was watching a Nascar race, he was outside doing yard work.  I didn’t think anything of it.  A while later his nephew walked in with him they chatted for a while and the nephew left.  A few days later, I was finally let in on why the nephew walked him into the house.  He had collapsed in the yard.  I made a doctors appointment and we went.  It was now ten days after the collapse.  Blood work was done, EKG strip ran, full physical completed.  A few days later we got the results, the blood work showed major muscle damage, like a heart attack, but no heart damage.  He needed to see some specialists for testing.  He took the stress test and passed it with flying colors.  He went through all the testing for MS and Lou Gehrig’s Disease.  They all came back negative.  He was still having horrible pains in his arms and legs.  The doctor said he was fatigued and dehydrated.  I didn’t buy it.

I started researching, low and behold his symptoms went hand in hand with Celiac.  I was relieved I now knew what was causing it. When he came home from work that evening, I told him about my discovery.  He was happy to know too.  He wasn’t ready to go back on the diet though.  Then came the flare from hell.  It went for days.  He a few days into it and he said, “I’ve got to go back on the gluten free diet.”  I sat down at the computer figured out what I needed to started ordering stuff and removing offending things from our kitchen.  I was happy to have an active healthy husband again.  Food was hard to get a hold of but as time went by things got easier to find.  Tasty alternatives to bread and pasta were being stocked in regular grocery stores.  Wal-Mart went from one of my least favorite stores to one of my favorites.  The fact that they labeled their food gluten-free was worth shopping there.  I became an advocate via the net for education in Celiac.

Now that all seems fine and dandy right?  Our lives were back to normal thanks to a diet change.  He was happy that there were options available that weren’t there when he was first diagnosed.  It didn’t seem so restrictive.  The options were varied, available on the regular grocery store shelves, there are a handful of ready to eat dinners we can store in the freezer it’s not so bad.  I started this blog to share my thoughts, joined twitter where I have a group of celiac friends, and even started another website to share local dining out options with fellow celiac families.

Then today I see that all the work that myself and others have done to get the word out is being made fun of.  Comments to that article are cruel and ignorant at best.  People saying it’s all in the head, moderation is key, ect.  I gave you a general overview of my journey with a celiac husband.  If you want to stop reading now, do so because the next part is going to be graphic and gross.

Remember when I said earlier he got the flare from hell?  Let me describe it.  He couldn’t sleep in bed with me.  He had diarrhea so bad it was like water.  He couldn’t relax or it would just run out.  Nothing he ate stayed in his body with in moments he was in the bathroom.  The longer it went on the weaker he got.  No sleep, dehydrated, and no nutrients equalled a grouchy husband.  He couldn’t stop it and that’s why he went back on the diet.  When he wasn’t on the diet every time he ate something with gluten in it this would happen for a couple of days.  Then after being gluten free for a couple of years, it happened.  He got accidentally glutened.  He told me that evening that he was sure he had gotten into something.  We both figured it would mean a few days of bathroom time and both blew it off other than to make note of what we were sure was the offending food.  The next day I got up for work, woke him up and he was complaining his shoulder hurt.  Still I thought nothing of it and went to work.  At 10:00 AM he was on the phone asking me to come home.  I was there within minutes, I work less than two blocks from home.  By 11:00 AM we were in the emergancy room with a outlook of a heart attack.  I called his mom at work and she came to the hospital as quickly as she could.  His dad was on his way too.  I told the doctor that he was Celiac and to please make sure any and all drugs given to him were gluten free.  The blood work finally came back no heart attack.  I was thankful.  Hours later after all the testing the doctor came in and told us the news.  There were four things that could cause what he had, a heart attack, an esophageal spasm, something I can’t remember, or Celiac.  Since the other three things had been ruled out it had to be the Celiac.  We were relieved to know that was all it was.  He spent the next month at the chiropractor though.  His stomach had cramped so hard and so bad that it dislocated his shoulder.

After reading all of that if you honestly can say that he would be fine if he just moderated his gluten intake you can think that.  I can’t change your mind.  He will not go back to eating a little gluten here or there.  It’s not worth it.  Until you have lived with someone who has it, you’ll never fully understand.

I’m looking for local Topeka restaurants that have gluten-free menus.  I’m setting up a seperate site that will be dedicated to those places.  If you’ve got one or know of a place that does, this will be great free advertising.  The website will be ready in 3 days and will be glutenfreetopeka.com.

I was doing a little google search on celebs that have the dreaded C.  There were like five listed.  I got to thinking why wouldn’t more people be listed.  Well, my number one guess is that people aren’t getting tested because they don’t know they symptoms and other associated issues.  So I’m going to be twittering them throughout the next few days. I’m going to try to post five tonight and five each day until I get them all. Ok so I tried that then realized very quickly it would be this time next year before I got it done.  It’s not that I want a whole bunch of people to have this but I don’t want people to suffer.

What started all of this,  why was I googling it to begin with?  I saw a quote on a message board that really bothered me.  It takes on average 11 years to be diagnosed here in the US.  It takes three weeks to get diagnosed in Europe. ELEVEN YEARS!!! Eleven years to be miserable for no reason other then our medical community doesn’t understand it.  So here we go….

1. bloating, gas and/or abdominal pain
2. Weight loss and fluid retention
3. Heart Failure
4. chronic diarrhea, pale, foul-smelling, or fatty stool, constipation
5. unexplained iron-deficiency anemia
6. fatigue
7. bone or joint pain, arthritis, bone loss or osteoporosis
8. depression or anxiety Behavior changes/depression/irritability
9. tingling numbness in the hands and feet
10. missed menstrual periods, infertility or recurrent miscarriage
11. Muscle weakness
12. Delayed growth or onset of puberty
13. Epitasis (nose bleeding)
14. Hematuria (red urine)
15. No obvious physical symptoms (just fatigue, overall not feeling well)
16. Vitamin B12 deficiency

Now for the issues that go along with Celiac check this link out Celiac Disease.  Yes, all of those things listed go along with Celiac.  So take a moment to read all the links provided there is a lot more information there then here.  If you start to wonder if you do have it go to Celiac Central do the checklist and take it to your doctor.  MAKE THEM DO THE TESTS!

References:

Celiac Central

Medicine Net

Celiac Disease Foundation

Celiac.com

This has been an interesting week for me.  My grandma spent Sunday night to Thursday afternoon in the hospital.  While I was there, I learned a woman I had worked with during high school had been told that the reason for her problems was Celiac.  Oh the joy right?

I spent a whole day emailing with her about things they didn’t tell her.  Have your parents and your child checked.  Why? It’s genetic, you had to get it from somewhere.  Check your make-up, hair dye, shampoo, and lotions.  Why?  It can all have wheat in it and you don’t want to be absorbing and undoing the healing you are trying to do.  I’m afraid I overwhelmed her, but I offered to answer what I could.

That evening my in-laws came up to sit with grandma while my husband and I went out for dinner.  We are pretty sure his mom has Celiac.  He asked her how her “rash” was doing now that she was watching her diet.  She told him the only thing she had cut out was bread because, “it hurts my stomach.”  Yeah, and you don’t think you’ve got Celiac huh?  Then the truth came out, she said, “I don’t want to have it.”  Well, no one else wants to have it.  It’s not a choice.

The next day hubby and I were discussing it and he said that if he had known he would have never had kids.  That’s how he feels about it all.  He would give up his two wonderful kids to spare them from having the same thing.

Last night I clicked on a link from twitter.  It was some one’s blog about being told that they had Celiac.  I wanted to cry.  The information given to that person was so far off that it wasn’t even funny, at least according to my research. Let me breakdown some points real quick.

• Less than 1% of the population has it.  Nope, the American medical community hasn’t caught up with the rest of the world in figuring out how to diagnosis it.  It is estimated that 1 in 133 Americans have it, but much less actually know it.
• Something has to happen for it to activate if you have the gene.  No, you either have Celiac or you don’t.  There’s no dormant Celiac.  The problem is there are so many things that actually caused by Celiac that aren’t connected to it.  Bloody noses, depression, ADD/ADHD, osteoporosis all can be signs of Celiac.  Most doctors treat the symptoms but don’t look for the cause.