Saturday, May 16, 2009

I'm a worrier by nature.

Well, maybe a little bit by "nurture" because my Mom is a worrier, my Grandma was a worrier and I'd venture to guess that my Great-Grandma was good at it too. My girls didn't stand a chance.

If there's nothing to worry about I have this system of running through my mind, thought tumbling upon thought, until I stumble upon a suitable "worry" zone to focus on. It's not a journey I consciously embark upon, it just happens before I realize that Elvis has left the building. It's maddening but I can't for the life of me make it stop.

There is a name for this little game that goes on in my mind.

"Creating Chaos."

Children who grow up in alcoholic homes have a tendency to possess this trait and carry it on into adulthood. That's because chaos becomes the norm in their household and they feel out of control. As adults they can subconsciously live out of the belief that if everything is "normal" (by society's standards), then something feels wrong. Thus the chaos must somehow be replicated for things to feel right.

ACOA's (Adult Children of Alcoholics) go about this in many different ways. Me, I choose worry. Pondering, thinking, wondering what could go wrong. What if, what if, what if. I have always been BIG on the "what-if's."

So add in this new diagnosis of Celiac Disease and the limitations it imposes and we now have:

Gwynn + everyday worry + Celiac Disease = WORRY!!!

Worry about safe foods.

Worry about the damage that's been done.

Worry about what to eat (this is a major part of every day.)

Worry about the fact I can't just go to a restaurant & eat "normal."

Worry that I'm becoming a pain in the ass & people wish I'd shut up.

Worry about unsafe foods.

Worry about my girls having inherited CD from me.

Worry that I'm worrying too much.

You get the drift - I worry.

I know the drill - worry isn't good for me. Worry makes a person sick. Stop worrying. You can't do anything about it so why worry?

If only there were a "worry" switch in my brain that I could somehow click to shut it down. Ah, now wouldn't THAT be lovely?!

Perhaps I could market such a switch and make millions of dollars helping the worriers of the world to be free of their own little dark clouds.

Nah. It would never happen. Because then the alcohol industry would lose BILLIONS of dollars in sales of their own brand of anti-anxiety medication. And let's not forget the pharmaceutical companies who would lose BILLIONS of dollars in sales of anti-depressants and anti-anxiety meds.

Which reminds me...I haven't taken my pills today.

Now THAT'S something to worry about.

Friday, May 8, 2009

One of the sickest days I remember consisted of me laying in my bed for nearly 24 hours, only getting up to potty or to TRY and find something I could eat that wouldn't bring on the extreme nausea and/or vomiting. I drank a LOT of 7-Up and Canada Dry in the weeks before the diagnosis. I am a BIG fan of Coke, but I couldn't stomach it when I was really sick. Same went for coffee.

I continued to lose weight and people who knew me were very worried. I was very worried. My husband kept trying to get me to eat - "just a little bit to get your strength back." I tried to tell him that I used up more strength when I was throwing my socks up because of what I'd eaten. Still, I understand his feeling of helplessness. Men fix things. And things out of their control can be very scary.

But to be compliant, and because I knew what he said was true - I really DID need to eat - I began to eat a lot of Campbell's Homestyle Chicken Noodle Soup. And wow - did I ever put away the Keebler Saltine Crackers. After all, isn't that what everyone recommends to someone with an upset stomach? Looking back I realize now that all I was doing was throwing fuel on the fire. Campbell's Soup - not a good choice. Saltine crackers - a really BAD choice.

But who knew?

I've never been a member of the "Food Is My Enemy" club, but after losing 15 pounds I quickly signed up as the President. I was hungry, but my brain processed the food first and I had such a fear of the outcome that sometimes my brain overrode my stomach and shut down the hunger. It was a viscious cycle:

I'm hungry.
I want food.
Food makes me sick.
Being sick makes me hate food.

Then my stomach would start grumbling again..."I'm hungry."

For most of my life I was the one who everyone envied when it came to eating and gaining weight. I could - and did - eat anything I wanted and not gain weight. I mentioned in an earlier blog that a lot of people thought I was a secret bulimic. Ha! If only they knew what I would go through to avoid throwing up. I hate everything about throwing up.

And what my hubby & I didn't realize at the time was that no amount of eating would have gotten my strength back. Turns out I had severe iron-deficiency anemia that required an iron infusion - now that was a F-U-N day! When I had a pretty bad reaction to the iron (only one in 100 react, they had told me), hubby had just left me to go to the bathroom. When he came back it was to a beet-red wife with two nurses and a doctor hovering over her. He looked like he could have benefited from a blood transfusion right about then. The day before that he had taken me for the small bowel biopsy to confirm the Celiac Disease and here we were a day later at the Cancer Center ready for an all-day process of iron infusion. It was a busy week!

It turns out the iron deficiency anemia was a blessing in disguise, because it pointed the doctors in the direction of Celiac Disase. Damaged villi in the the intestines don't allow nutrients (including iron, and iron supplements) to be absorbed into the bloodstream. And from there comes the iron deficiency.

Looking back I can say for certainty that I've learned some things.

1. Not everything can be cured with chicken soup.

2. The brain is a powerful organ when it comes to seeking comfort.

3. I will be careful how I define myself as "sick" from now on. I thought I knew sick before, but it turns out that sick and I had only had a passing acquaintance before I got SICK.

Well, I'm ready to start the weekend. I need to get some food planning done and I also need to do nothing but veg out for awhile too. I still have Gray's Anatomy unwatched on my DVR - I hear it was a good one.

Wish they'd get a character with Celiac at Seattle Grace. Or maybe Dr. House could have a complex case that turned out to be Celiac Disease. Or a new character falls from the sky on Lost and he or she is gluten intolerant.

So many little time.

Thursday, May 7, 2009


That's what I've become - obsessed.

Obsessed with food. Thoughts and thoughts and thoughts of food randomly spinning around in my head all day long. What can I eat? Is it really safe? Do I want to risk it?

I sort of have this conveyor belt in my mind with all of the "safe" things I've discovered since going gluten-free. They are all foods that I like and some are even good for me! Ah, but let me just say that when that conveyor belt has made lap after lap after lap in front of you, even the good things don't look so good any more.

I am the type of person who generally has an obsession or two going at any given time, but the difference is that this particular obsession wasn't my idea. And I'll be honest - I'm more partial to things that are my idea than things that weren't.

I believe the key to making this new way of life a positive thing instead of a drudgery is to begin to shift my focus. I need to find a way to channel my "food-thought" obsession into an obsession for cooking healthy meals that all of us can eat.

My next step after the Dexascan on Monday is to check with my insurance and see if the Registered Dietician that was recommended is on my plan. I already looked online and didn't see her there, but I'm just hoping it was wrong. And if she's not on there, then I'll go to the one (and only one) who was listed. I think if I can talk to a real live person who understands the diet then I'll feel a whole lot better.

This next part is sort of random, but I wanted to post the symptoms of Celiac Disease for those who have asked me. I didn't fit the profile on some of what doctors used to deem the "classic" symptoms, therefore I was never tested. You can find out more information at

Celiac Disease Symptoms


Celiac Disease may appear at any time in a person's life. The disease can be triggered for the first time after surgery, viral infection, severe emotional stress, pregnancy or childbirth. CD is a multi-system, multi-symptom disorder. Celiac Disease symptoms are extremely varied, can often mimic other bowel disorders and are not always gastrointestinal.


Infants, toddlers, and young children often exhibit growth failure, vomiting, bloated abdomen and behavioral changes.

Symptoms of Celiac Disease May Include One or More of the Following:

  • Recurring bloating, gas, or abdominal pain
  • Chronic diarrhea or constipation or both
  • Unexplained weight loss or weight gain
  • Pale, foul-smelling stool
  • Unexplained anemia
  • Bone or joint pain
  • Behavior changes/depression/irritability
  • Vitamin K Deficiency
  • Fatigue, weakness or lack of energy
  • Delayed growth or onset of puberty
  • Failure to thrive (in infants)
  • Missed menstrual periods
  • Infertility male & female
  • Spontaneous miscarriages
  • Canker sores inside the mouth
  • Tooth discoloration or loss of enamel

Have You or a Family Member Been Diagnosed With the Following?

  • Type 1 Diabetes
  • Chronic Fatigue Syndrome
  • Fibromyalgia
  • IBS
  • Eczema
  • Sjogren's Syndrome
  • Peripheral Neuropathy
  • Thyroid Disease
  • Dermatitis Herpetiformis
  • Osteoporosis

Dermatitis Herpetiformis (DH) is skin manifestation of celiac disease characterized by blistering, intensely itchy skin. The rash has a symmetrical distribution and is most frequently found on the face, elbows, knees and buttocks. DH patients can have gastrointestinal damage without perceptible symptoms.

Tuesday, May 5, 2009

Well allrighty then!

Challenge: My daughter's eighth grade awards banquet this evening, catered by a local restaurant.

So I made the phone call and got the scoop on the buffet (which I like to say BUFFETT, ya know, like Jimmy in Margaritaville?)

Marinated chicken breasts - yes there is soy sauce in the marinade and not knowing what brand and if it's gluten-free, not willing to take a chance there.

Ham - no soy sauce there, it should be okay. Gonna weigh that one when I get there.

Mashed potatoes and gravy - if they were real they would be okie dokie (and let's face it, when did you ever get REAL potatoes at a catered middle school assembly?) So left with the sad fact of instant - the taters are a no-no. And gravy, well - don't even have to toss that one around the old noggin.

Green beans - no added sauces. Yay!

Tossed salad - just greens, carrots, etc. No croutons. Note to self: Don't forget to bring your own salad dressing.


Spice Cake - Good thing I'm not a huge fan of spice cake, but I'm sure it will look pretty enticing tonight.

And of course the food is not the main event and I just need to keep in mind that I am so blessed to have a healthy daughter who garnered us this invite by keeping her grades up. It's not about me, it's about her.

And that will be the icing on cake!

Monday, May 4, 2009

I always loved food. For as long as I can remember, food has represented comfort, love, happiness, satisfaction and pure joy. Like most everyone else, for me food is connected to so many memories. Memories from childhood - coming home from the city pool to find that my Mom had made my favorite - tacos! Nothing felt better than to come through the door and be greeted by the smell of what I came to know as heaven in a shell.

As the years go by there are new favorites, new memories - all fused together much the way the spices blended together to create something unique and wonderful. Something that can't be replicated by anything on the face of the earth. Eating is the means of getting nourishment into our bodies, but the marriage of food and memories is the very heart of who we are.

I was fortunate to have the metabolism that allowed me to consume whatever I desired and not gain weight. It was a good thing, but it has had its drawbacks as well. I cannot begin to tell you how many times I have been accused, whether vocally or in a passive-agressive manner, of being anorexic or bulimic.

"How do you stay so THIN?" (I don't know, just the way I am.)

"It must be nice to be able to eat whatever you WANT!" (Yes it is, but I can't take credit for that.)

"Do you ever eat?" (Why yes, I do eat, thank you very much. And I enjoy it immensely.)

"How much do you weigh?" (Seriously? Are you really asking me how much I weigh? Would you mind telling me YOUR weight first?"

And my favorite unspoken question of all: "Are you anorexic or bulimic?" (No, but I doubt you believe me so it really makes no difference how I answer that question.)

I always felt guilty when I had those silent comments running through my head. After all, most people were simply envious that I appeared to have learned some ancient secret for being thin. I knew that most of the time the comments weren't made maliciously or to hurt me. Still, it became more and more of a challenge not to fire back with a retort that would make them understand that this seemingly wonderful weight loss secret was not a blessing, it was a curse.

When I became seriously ill around three months ago and lost 15 pounds I didn't have to spare, I ended up being the envious one. I found myself looking at women on TV who would probably have killed to lose 10 pounds and I was wishing I could somehow take those pounds from them for myself. I looked at butts, boobs, upper arms, calves, thighs and tummies. I longed for some of the fat I saw around me. It was crazy, but it was real.

Food quickly became my enemy. At first it was just the mild stomach pain that I'd been dealing with all of my adult life. I'd been diagnosed (wrongly, as it turns out) with IBS (irritable bowel syndrome) shortly after my second daughter was born in 1994.

"Drink lots of water." "Add fiber to your diet." "Use Metamucil or Citrucel."

I did those things and my tummy seemed better. For awhile. And then I'd have those bouts of nausea, light-headedness, heart palpitations and depression. More doctors, more drugs. Many, many tests. Blood tests. Gallbladder tests. Colonoscopy. Upper endoscopy. Exploratory laproscopic surgery. More doctors. More drugs. No real diagnosis.

And then this year when all hell broke loose in my stomach. Everything went haywire. The iron-deficient anemia that took away every ounce of extra energy I might have.

Finally the diagnosis of Celiac Disease which finally gave a name to the mysterious stranger that had invaded my body and my mind. Finally an answer. Finally someone told me something that answered the questions everyone had been asking me, silently or aloud, all these years:

"How do you stay so THIN?" (Celiac Disease)

"It must be nice to be able to eat whatever you WANT!" (It was, but now I have found out I have Celiac Disease and must avoid all gluten. Other than that I can still eat whatever I want.)

"Do you ever eat?" (Why yes, I do eat, thank you very much. As long as it's gluten-free. And I enjoy it immensely.)

"How much do you weigh?" (I weighed 85 pounds when complications from Celiac Disease took me to the mat. Right now I'm gaining weight at a slow and steady pace. My doctor says the weight will come and not to obsess over it.)

And my favorite unspoken question of all: "Are you anorexic or bulimic?" (No. And I never was.)

Sunday, May 3, 2009

Today marks the official third day of my self-started pity party. I intend to ride this day out and tomorrow I MUST begin to get over myself and implement a PLAN!

All my life I have hated planning. I hate someone telling me this has to come next, that has to come before, here's what you do - you get the idea. Living gluten-free does not come without planning. Living gluten-free is not a diet, it is a lifestyle. And it is time for me to embrace the lifestyle and stop the incessant worrying.

I have been having the stomach pain again, which leads me to believe I've accidently ingested gluten. I think that's what started all of the self-pity and increased my anxiety and depression. It was a matter of thinking that gluten is just lurking out there - waiting to pounce on me sort of like a mountain lion hiding behind a tree. From that thought process, I went to the thought, "I have to do this (read labels, be vigilant) for the REST OF MY LIFE!" And once my mind grabbed ahold of that thought, all of the other crappy thoughts followed.

Yesterday was a BAD day. Stomach pain, a full-blown panic attack (which I haven't had for months), isolation, depression. I had jumped into my pity party with both feet and it has been like quicksand, slowly pulling me down. Doesn't help that the weather here in Southern Indiana has been gray and rainy and cool for the past 3 days.

But I have to believe that yesterday was a GOOD day as well. I got a thought process out of my head and onto this paper - I had been thinking of starting a new blog dedicated to Celiac Disease and living gluten-free but wouldn't take the time to sit down and set up the blog. I guess yesterday with all of my sitting around moaning "oh poor me" to myself, I found the time to get the ball rolling.

My head knows this lifestyle will ultimately make me feel better for good and that these feelings will pass. I have come across some very interesting information about the effects of gluten-withdrawal - something I had not been told about, hadn't read about, didn't even know existed. When you add in leaky gut syndrome (which I have & will discuss down the road), it can be a prescription for a whole lot of the symptoms I mentioned above. One site likened gluten-withdrawal to what an alcoholic goes through after they stop drinking. And I have experience with that as well - 9 years sober on November 15, 2008. That was a battle, and I need to get it through my head that this too will require vigilance and determination.

I am praying that today WILL be the day I pop all of the black balloons at my party, stop lamenting the fact that I can't eat the cake sitting in front of me in all of it's white-flour glory and gaze around at all of the others who CAN have that glutenous enemy of mine. Instead I have to blow up some new, bright-yellow balloons, bake a scrumptious gluten-free cake and pull that girl out of the quicksand and place her feet solidly on the luxurious green grass that represents the possibility of a new, ABUNDANT life!

Saturday, May 2, 2009

I guess they really have no way of knowing when my body started attacking itself whenever I ingested that nasty little protein gluten. When I think back over my lifetime so far, I remember having "stomach problems" as far back as my early teenage years. Me and my friend, who also had stomach problems, always had a bottle of Pepto Bismal on hand. That would put almost 34 years between the "problem" and the diagnosis. But maybe those early years of the nausea, stomach aches, pain and other symptoms were attributable to something else and the Celiac Disease was triggered much later in my life. Who knows?

I guess it doesn't really matter - the WHEN is far less important than the WHERE DO I GO FROM HERE that the Celiac diagnosis has brought to the forefront of my life. After two months of severe symptoms that had me spending at least 2 days a week in bed just to replenish the energy it took to get through the other 5 days, I finally got to a place where someone FINALLY could tell me the answer to a lot of the WHY's of the past few years of my life.

The good news is that Celiac Disease is manageable with nothing more than strict adherance to a gluten-free lifestyle. The bad news is that a strict adherance to anything has always been, well, something of a challenge to me. I've been compared to a cat at times - I'm all for doing something as long as it's my idea. This is something that I have to figure out to use to my advantage in living this new lifestyle.

I plan to write more about the past few weeks since my "official" diagnosis following a small bowel biopsy, April 7, 2009. Not even a month has passed and already I have been through a myriad of physical and emotional changes. I had a wonderful week of feeling at the top of the world and then things sort of leveled off. And recently the leveling has begun to take a downward slide. Mostly emotionally, but there have been some old familiar pains which has put me on a backwards quest to identify the gluten that I somehow accidently ingested.

My hope is that I will use this blog to dump all of the stuff in my head so I don't become someone my friends and family avoid. I'm pretty sure the topic of gluten will become something everyone will run from after hearing about it a few hundred times.

And I hope to be able to list some good links I've found from other reliable sites and blogs of others who have walked this path a whole lot longer than I have.

I don't dream of sugarplums anymore...I am too busy dreaming of the ingredients of what seems like the thousands of labels I spend my days reading. They say it will get easier and I that gives me something to hold on to.