The Dinner Party

Nothing makes me more aware of my differences than a dinner party.  Smaller parties are ok.  I can eat before and avoid the snack platter.  No biggie.  Dinner parties, even with family, are a whole new ballgame.

Family dinners are stressful.  My family tries to understand but it is complicated.  Quite often they go above and beyond when it comes to food prep, ingredients, and serving.  However, they don’t understand completely and I don’t expect them to do so.  I don’t let my guard down but I’m ok with that.  It comes with the territory.

Throughout the cooking process and dinner I have a difficult time enjoying the moment because I’m watching the food.  The tiniest crumb will make me ill for days.  I don’t have a problem with dishes that aren’t gluten free but one absent-minded move with the spoon means disaster for me.  I’m always having to watch to see who touched their regular bread with the butter knife and then stuck it back in the butter dish.  Did that contaminated spoon just touch my safe dish?  Did I miss something?  Will I be sick for a week?

It’s easier when Jon is with me.  He’s a second pair of eyes on the food.  If something gets contaminated he’ll either point it out to me or grab the dish and scoop out the contaminated portion.

It’s difficult to watch people go out of their way for me and I’m still not ok with it.

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I am sitting in a room at Jon’s parents’ house feeling totally useless.  He is going out with friends tonight to play video games leaving me here with his parents. Which is fine.

Except they are having a party tonight for their friends.

Jon’s father has gone out of his way to make gluten free food tonight.  He’s modified recipes, gotten special ingredients, etc.  Except I totally cannot go to this party.  Not because I’m sick but because eating gluten free is difficult enough when it is just family around. Now I have to do it in front of total strangers.  I just can’t do that in front of strangers…especially alone.

An Open Letter to the Waitress Who Doesn’t Believe I Have Celiac Disease

This was originally posted on Tickld.com but was flagged for review after much backlash.  Please click it to enlarge and read.  Then scroll down to read my letter to this waitress.

Click to Enlarge

To the waitress who doesn’t believe I have Celiac:

I was really upset after I read this.

I understand where you are coming from.  Working in the food industry is difficult and diners can be very demanding.  I know a lot of customers come in on “fad” diets and have odd requests regarding meal preparation.  However, contrary to your uninformed opinion, you cannot tell who has a gluten allergy and who does not.

I have Celiac Disease–that’s the autoimmune one. I have a formal diagnosis from a doctor. It’s in my medical record. It’s why I can’t join the army like I had planned 10 years ago.

I go out to eat frequently. I’ve gone to Italian restaurants and eaten their gluten free pasta (never with alfredo sauce though because that DOES have gluten in it). More often than not I’ve gone home without issue. On the flip side, I’ve gotten contaminated in the kitchen of my own house.

What you fail to realize is the fact that everyone manifests symptoms differently regardless of if they have the allergy or the disease. I get cramps, nausea, UTIs, anemia, and a rash. I have a friend who gets mild bloating. Another friend goes into full anaphylactic shock with even microscopic contact. We all have formal diagnoses.

I know going into the restaurant that I could get contaminated. Like I said, I’ve worked in the business. I know what goes on in the kitchen first hand. I do what I can to prevent it. I order from the gluten free menu and alert my server to my condition. Other than that it is out of my hands and ultimately I am taking a risk.

I refuse to seclude myself because it creates a minor inconvenience for you. I will not apologize for something that is entirely out of my control. I sure as hell did not ask for this disease. It has upended my life and changed everything. You say that it is not all about me when I go out to eat.  Well, honey, it’s not all you you either.

The fact is, your restaurant probably has a gluten free menu which is why I’m eating there. So deal with it or find a new place to work that does not cater to the 20 million gluten intolerant people in the United States alone.  Or perhaps your could just show some sympathy because I promise you, if I could trade this disease away I would in a heart beat.  But I can’t so here we are.

It’s taken me 2.5 years to start correcting 22 years worth of damage from this illness.  Please, I beg you, don’t gamble with my health because you don’t know or understand and won’t learn the facts. A little compassion goes a long way.

Sincerely,
A Card-Carrying Gluten Intolerant Diner

The Glutening

Day One:

It begins innocently enough.  A small twitch in your gut, an inkling in the back of your mind.  Something is not right.  You ignore it at first.  Surely you are just being paranoid.  You were so careful…it can’t be happening again.  Maybe, it will just go away.  Sorry, not this time.  May God have mercy on your soul.

Day Two:

Immediately upon waking your brain is screaming, “GET IT OUT!  GET IT OUT!”  The fun has only just begun.  The next 18 hours are a living hell.  Your body is overcome by a pain so intense rational thought is nearly impossible.  You can’t eat.  Drinking water seems like a cruel test.  You try to pass out but nausea mocks you and sleep is only an illusion.  By the time night falls, everything about you is exhausted: your mind, your body, your emotions, your spirit.  You lay in bed and pray to God to take this away or take you.  Mercifully, sleep overcomes.

Day Three:

As quickly as the storm hit, it is over.  Slipping away in the night like a thief; taking with it a small amount of your trust in your own body.  You wake up.  Your head clears.  You survived.

So, this was obviously a little bit satirical and overly dramatic.  However, this is not all that different from the thoughts and feelings I have after I eat a seemingly innocuous bread crumb.  One bread crumbs is all it takes.  It’s a little intimidating.

This is only one version of a reaction to gluten, a common protein that is found in foods, dental products, drinks, even things the most health conscious gluten-free veteran might not think about checking.  My reaction is usually over in a few days, some people react for a week or more.  My reaction, though it might not seem true, is relatively mild while other sufferers may be hospitalized.

Celiac disease is not all that rare.  I was shocked to find out it is one of the more common G.I. disease, yet one of the most least likely to be diagnosed.  I most likely have had this disease since I was born.  I was not diagnosed with it until last December, nearly 25 years later.  My story is not the only like this.  Countless people have suffered in silence, believing this was simply the hand they were dealt, until some doctor finally whips out their ace in the hole.  Still many more continue to suffer without answers.

The symptoms for celiac are all over the board.  It is an auto-immune disease so it not only affects the G.I. system but every single part of the body.  Short stature is a symptom, hair loss, mood swings, diarrhea, nausea, indigestion, anemia, urinary tract infections, even itching that won’t ever stop is a symptom.  The disease is so widely variable that many doctors are unable to put the pieces together.  Simply looking for failure to thrive doesn’t cut it anymore.  Doctors need to look deeper, yet many are unable or unwilling to do so.

I am asking everyone to be aware.  So many people are going undiagnosed.  Having suffered though the pain, nausea, and fear for almost 25 years, I would not wish this on anyone.  Unfortunately so many people are unaware of this silent epidemic.  The more informed you are the more helpful you will be to yourself and to those you know.  Having knowledge is powerful.  Knowledge can help beat celiac disease.

Resources:

MayoClinic.com

NIH.gov

Celiac.com

CeliacCentral.com

Gluten Free is the Way to Be (For Me at Least)

Wheat is Evil

Remember, how I said it was possible that I might inundate you with multiple posts a day now that holidays are over…I apologize again.  I’ve been working on this post since December and I think it may finally be ready to go.

So, I was dealing with that mystery illness for the past three years.  If you hadn’t already guessed from the title, it was a gluten intolerance.  After I found out, it made so much sense.  Even weird symptoms that I never would have linked together (generalized itching, UTIs, and indigestion for $1000, please) all fit into a nice little package now.  Even issues I had as a kid all come together to round out this neat little diagnosis.

As I said previously, there would be a champagne toast to whoever figures out what was wrong with me.  And the winner is…my boyfriend and I.  After I made an appointment with a gastroenterologist, I was filling out his paperwork and it wanted to know if I suffered from…generalized itching.  I did some research on my symptoms and gluten intolerance kept popping up.  It had crossed my mind in the past that this could be the issue but I never seriously thought about it.  Even though all the information said, ‘DO NOT DISCONTINUE GLUTEN UNTIL DOCTOR TELLS YOU TO DO SO,” I discontinued gluten.

It was like night and day.  I felt better almost immediately.  Many of the icky symptoms were gone and I felt better.  Three weeks later I still saw the gastro guy.  He told me it sounded like Celiac’s which was when I told him I had stopped eating gluten.  The doctor then told me that in order to get an accurate diagnosis, I needed to stuff myself full of bread for two weeks and then come back for a blood test and upper endoscopy.  Umm…HELL NO.  Since I was feeling better without gluten, I decided to forego the two weeks of torture just so the doctor could tell me I shouldn’t eat gluten.

Gluten Free is the Way to Be!

So that’s where I am now.  I had a relapse last week due to some cross-contamination somewhere in the food chain (God only knows where).  It was a wake up call as to how badly I had been feeling…for three years.  It was unbelievably awful and I didn’t even realize it because it was routine.  Freakish.  One day I hope to get over my new-found fear of cross-contamination and be desire to take Xanax before eating (I kid).

For now, I am happy, healthy and excited for 2012.  Here are some gluten-free posts to look for in the future:

• Whole Foods is My Homeboy
• The Gluten-Free Traveler
• Jesus Makes My Tummy Hurt (Gluten Where You Least Expect It)

How I Became an Optimist Without Really Trying (or Realizing It)

Telly Monster is always very, very worried.

If you’ve never watched “real” Sesame Street, Telly Monster was a HUGE worrywort.  He was always concerned about everything that could go wrong, no matter how irrational.  Growing up my nickname was “Telly Monster” because we both had the same mantra, “What if…?”

For the better part of the past twenty-odd years I’ve been alive, I’ve been a worrier.  If worrying were a college degree, I would have graduated with a 4.0 when I was ten-years-old.   The worrying eventually gave way to pessimism.  If I had a cold, I would just assume I was going to die and then when I lived, it was a great feeling.

It was a miserable existence and I didn’t even realize it.  I was so caught up in my wallowing and complaining, I had no idea how terrible it felt to be a pessimist.  I thought that wallowing made me happy (how that makes sense I have no idea)!

Then I got sick…and I stayed sick.

Yesterday, while talking to my counselor, I realized that I have become a happier more optimistic person.  She asked me to describe myself in seven words and five of the seven were very positive and the other two ended up with a positive spin.

I have no idea when it happened but my thoughts, moods, and behaviors have shifted. I don’t want to get out of bed and go to class each day.  I know if I stop now, I’ll never go back.  I have horrible stomach pain on occasion and I respond with, “At least that endometriosis was good training!”  The world has suddenly become this weird, shiny, smiley place and I have no idea how I got here.  My mantra suddenly went from, “what if…” to “this too shall pass.”

Getting sick with this mystery illness is the best worst thing to ever happen to me.