Gluten Free Me

DSCN0787-1Last week all my  writer friends were getting excited for a conference, but not me. Instead I was overwhelmed with a great sense of anxiety. It’s the same anxiety I experience anytime I consider eating away from home.

And it’s not just the ‘what am I going to eat?’ that overwhelms me. It’s the fact that because of me someone else may be denied their choice of food so that I can be included. I appreciate the thoughtfulness of my friends and family but in the back of my mind I wonder if they are resenting me because they really wanted Long John Silvers, but because I’m there they have to settle for Wendy’s again.

My family has gotten used to my emotional ‘just eat where you want, I’ll deal’ tirade. It’s frustrating for them and for me.  I don’t want to be the cause of others going without. I don’t want to be resented. I want them to enjoy their food, not grumble between mouthfuls or have hardened hearts.

I also don’t want to deal with the questions, ‘Aren’t you going to eat? Why aren’t you having a slice of cake?’ It’s probably a good thing that I don’t eat cake very often. 🙂

If you haven’t guessed it by now, I’m one of those gluten-free people. For some reason my body cannot deal with the gluten that is found in wheat, rye and barley. The gluten protein breaks down my villi, making it impossible for my body to intake the nutrients of whatever it is I’m eating, which leads to a multitude of complications. Just imagine if your brain wasn’t receiving the nutrients it needed. Your muscles, your bones, your organs?

I’ve heard some people described it as a slow agonizing death, and they’re right. For thirty-plus years, I did not know I couldn’t have gluten. My digestion issues were off the charts, as were my triglycerides, cholesterol and a myriad of other health issues. I had been diagnosed with over twelve medical issues, none of which were mental illness but if you ask my husband and parents I’m sure they thought I was close, cause to them and the medical professionals, even though many tests proved there was something wrong, a lot of what was going on was in my head.

If only I wouldn’t think about my congenital kidney disease then it would go away. If only I wouldn’t say I had, yet another tremendous migraine, then I wouldn’t get them.

When I say my triglycerides were off the charts, I mean they were totally off the charts. For my age, the normal numbers were around 120, mine were over 1200. Yes, 1200. My normal pulse rate was around 120 as well.  Yea, I had a surgeon tell me at the time that my heart was a ticking time bomb. This was after I had had my gallbladder removed and right before I was diagnosed with congenital kidney disease (a nice way of saying, hey, we realize there is something wrong, we just don’t know what it is).

I read a recent study that indicates gluten increases cholesterol levels. It’s also well known that if your body isn’t getting enough calcium your body will go into hyper speed in reproducing that calcium. When I had my gallbladder removed there were four dozen little calcium stones in it. And since my body wasn’t able to take in nutrients it wasn’t taking in enough calcium.

When I had my first kidney surgery, they discovered I had a non-working flap. It’d get stuck, which meant I was more prone to kidney stones any way, which just caused a whole herd of other problems.

As you can imagine I was a medical disaster. And now I’ll probably go a little TMI, just warning you up front. I was diagnosed with a ‘slight’ case of IBS (Irritable Bowel Syndrome). My mouth fell to the floor when the doctor told me that, not because of the diagnosis so much as the ‘slight’. I looked at him and said, “Are you kidding? I live in the bathroom.”

I asked another doctor if there was one thing that could be causing all my issues. At this point, I was so sick. I felt like I was 90. In my mind I was going to end up in a wheelchair before long because it hurt so bad to walk and my fingers had a tendency to curl because of the pain, not to mention the difficulty in breathing. Once, I got so annoyed with my husband because of his snoring, come to find out it was me, not him. Some of this, like the muscle dystrophy I was experiencing had been compounded by the statins that I had been put on for my triglycerides, but some of it was a direct result of the gluten as well.

That doctor’s response was, “Sorry, some people are just sickly and you happen to be one of them.” I walked out of there in tears and more depressed than ever. I didn’t want my family to have to take care of an invalid. I don’t need to tell you about the deep, dark thoughts going through my mind.

It was by the grace of God that in 2008 I discovered a book by Tosca Reno called Eat Clean. Over and over I kept seeing references to gluten free. It’s something I had never heard of. And then hubs and I were watching some medical show on mystery diagnosis. This woman had many of the same symptoms as I did, but the one that got me was the dizziness in the shower when she washed her hair. I can’t count the times I near fell over in the tub.

Hubs and I kind of looked at each other and he encouraged me to check into this Celiac thing. I did some research and dug through gluten free forums. The symptoms were so familiar, some were different but so many of them were the exact same.

So, in the summer of 2008 I quit eating gluten. I ate hot dogs, rice, Reese’s Peanut Butter cups and plain lays potato chips for two weeks and I felt like I could run a marathon.

One day, about a month later, we ran to Burger King I ordered a salad no croutons and hubs got his normal BK with fries. Man, o’man did those fries smell good. Surely one wouldn’t hurt me (fries were cooked with breaded items like nuggets). By the time we reached our shop, which was only a few minutes a way, I had sweat pouring off my head, I had the chills, my stomach was in extreme pain and I was super sick, which led to about three days of being sick.

From that time onward I was really careful about what I ate. Knowing how ill gluten made me, there was no going back. Not even to be tested for Celiac. By the time I realized that I should have gone through the testing I was three months into living and I didn’t want to experience that slow, agonizing decay of my body again. And not everyone tests positive for Celiac, so it’s probably a good thing I didn’t get tested.

I’m so sensitive that one time when I grabbed a spoonful of peanut butter, which had been slightly contaminated with a bread crumb, I had become very ill.

Celiac is kind of a new disease, and it’s not a wheat allergy, it’s an auto-immune disorder. Five years ago, 95% of people who had Celiac were misdiagnosed with other things like Lupus, MS, Fibro, IBS, infertility due to lack of cycles, which is another thing I dealt with, not the infertility, but after discovering this bit I realize just how big of miracles each of my children are. The list goes on and on. With the realization that more people suffered from Celiac than initially believed doctors from other fields were being thrown into a quick study of how to treat people.

I am by no means an expert from a medical standpoint and don’t really understand all the ins and outs of this disease. However, I’ve lived it as do many others.

Gluten Free Girl was a huge blessing, as was Gluten-Free Goddess. Jeniffer Esposito, an actress, most recently of Blue Bloods is now telling her own story of hope at Jennifer’s Way.

Each gluten-free person, I won’t say Celiac here, has their own story. Some are similar, many vary. I don’t tell you all of this to pity me or what have you, I hate that. I tell you all this in hopes that if you suffer from the same sort of thing I did ‘somethings wrong but nobody knows what, it’s all in your head’ sort of thing, you’re not alone. I also tell you this because if you know someone who can’t have gluten you might understand them a little better. And hopefully, you’ll find some inspiration for a contemporary story here. 😉

By the way, most of my issues disappeared once the gluten did, even my pulse rate dropped into the 80s where it should be. I still have migraines but now instead of the three to four a week, I have them a few times a month and they aren’t even close to as debilitating as they had been. Before I couldn’t function, now I usually can.

Writing Prompt: The red second hand ticked by on the white faced clock as cold air blew down from the vent, right down the split of the  hospital gown.
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4 thoughts on “Gluten Free Me

  1. A couple in my family have to be gluten free also. Did you ever hear of the book “Wheat Belly” by Dr. William Davis? He’s my husband’s doctor. That book is a good explanation why so many people have to be gluten free now. They changed the chemical make-up of wheat about 20 or so years ago. Now it’s closer to poison than real wheat. Thus, so many people can’t eat it.

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