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Celiac Disease: It’s not all roses and sunshine

May 23, 2010

Disclaimer:  Rant below.

I’ve written some about how grateful I was when I was diagnosed with Celiac disease.   I went through years of tests and false diagnoses that did nothing but make my quality of life worsen and my symptoms more prolific.  I spent a year and a half afraid to eat vegetables because I was told that fiber was the enemy.  (I spent most of that year and a half eating french bread because I was told it was the safest, most stabilizing thing to eat.  [Yikes!])   I (and my parents) spent a fortune on medical bills that, in reality, did nothing except rule out other diseases that I probably never had a chance of having in the first place.

There was a period of time where I was sleeping 16 hours a day.  I was fortunate to be in college at the time, so I only had to shuffle myself to class for an hour a time and then I could come home and sleep.  I was honestly terrified of how I was going to enter the full-time workforce as I couldn’t make it through 2 PM without needing a 3 hour nap. 

Along the way, there had been many times that I had received a diagnosis and I thought “This is IT.”  I’d gleefully tell Matt that the doctor found what my problem was and embark on whatever treatment/diet plan they happened to suggest. 

And maybe immediately I’d feel a little better, maybe I’d feel a little worse.  After a month or two, my symptoms would inevitably be worse than they were before I tried anything new.  But instead of abandoning whatever plan I was on whenever my doctors would admit that ok, maybe you don’t have disease X after all, I’d keep on it, because well, what could it hurt?  (My doctors backed this as well… probably as part of their “I don’t know what the hell is wrong with you, so I’m just going to wing it” philosophy)

And that’s how I ended up on a diet of mostly french bread, which in hindsight, was about the worst thing I could do for my body.

When I was finally diagnosed with Celiac, I honestly thought it was just Round #893 of get my hopes up, make myself feel worse.  And so did Matt.  I remember us talking about the research I had done about cross contamination and both of us being in disbelief that we wouldn’t be able to use the same non-stick pans for gluten-free cooking that we’d always used.  We thought it was a crock of crap, honestly.  But I tried it anyway, eating egg whites, apples, and well-steamed veggies on my first day GF.

And then I woke up the next morning.  The 7 months pregnant bloating that I had been experiencing for the last 3 years was down to a 3 months pregnant bloat.  And the throbbing stomachache?  Down to a dull roar.

Fast forward a week and the bloat and pain were gone.  And then other things started going away, too.  The headaches that I thought were stress-related?  Gone.  The lower back pain I attributed to needing a new mattress?  Gone.  Acne?  Gone.  Mysterious 20 lbs. that I’d somehow packed on over 4 months?  Started falling off effortlessly at 3 lbs. a week.

So naturally, I was absolutely thrilled to have Celiac and a treatment program that couldn’t be more simple:  just don’t eat gluten.  No pills, no acupuncture, no ridiculous homeopathic treatments. 

In short, it was like a gift… for a while.

See, I was never all that angry before being diagnosed.  I always had a diagnosis to look forward to.  I believed that there was something out there – a pill, a treatment, whatever – that would cure me, we just hadn’t found it yet.  Even after diagnosis, I figured that if I learned the ropes well enough, I would feel good all the time.

Unfortunately, it doesn’t work that way.  Maybe for some people, but clearly not for me. 

Even when I follow all the rules to a T, I sometimes get sick for no reason.  (Well, I’m sure there is a reason, but not one that I can detect.)  And that’s the worst.  I can’t plan for anything and we end up canceling social plans because I feel like dirt.

And that makes me ANGRY.  I’m angry that I eat healthier than 99% of people – I eat my vegetables, choose foods for their nutritional benefits, get the right balances of carbs/protein/fat.  I follow all of the rules, and yet sometimes, it doesn’t do me any good.  I’m angry that I can’t eat at restaurants without a least a 50% likelihood of being bedridden later that day.  I’m angry that we can’t travel without me bringing a suitcase full of backup food.  I’m angry that Celiac disease, despite affecting a many as 1 in100 Americans, gets no recognition for fundraising efforts (for research) because it’s not (usually) fatal. 

I’m not going to argue that Celiac is worse than breast cancer, or heart disease, or MS.  It’s not.  But it does affect quality of life and I think it takes having it to understand it.

So many times, I think people are afraid to be angry about something that happened to them that wasn’t their doing.  It isn’t limited to having a food allergy (Celiac isn’t an allergy, it’s an autoimmune reaction, but you get the picture) – it could be an athlete getting injured and being forced to stop practicing their sport, etc. 

BUT

Bad things happen to people everyday and everyone has problems in their lives.  Be it be relationship problems, financial issues, heath, etc. 

My “problem” is that sometimes my body doesn’t treat ME right.  That’s not the end of the world.  I have a great husband and family, good friends, a great career.  If I didn’t have health issues, maybe I wouldn’t have a supportive family life, or perhaps I would be in a dead end job.

Things could always be worse. 

If I had to have a disease, there are numerous afflictions that are much, much worse than having Celiac, and I’m blessed that this is really the only thing wrong with me.  I could have a fatal heart condition, or schizophrenia, or be missing my right arm. 

I generally set a very positive tone about being gluten-free, and I really am grateful that I discovered the gluten-free diet because despite being upset about being a Celiac, I am very happy that there is something I can do that makes me feel better most of the time.  If I have to be sick, I’m happy to have something that is relatively inexpensive in terms of medical costs and can be treated simply by abstaining from eating something (that simplifies it, but you get the picture).

So rather than wallowing in what I can’t do, I’m going to focus on what I CAN do.  Yesterday morning, I rode 60.3 windy miles in 4 hours.  My body carried me through and I finished strong.  I may not be able to always make plans far in advance, but my body CAN do lots of things that other people can’t.  And  that’s what I need to remember next time I’m upset about having to cancel plans because I feel like death:  Things could always be worse, and I’m very lucky to have what I do have.

[/rant]

What are the biggest obstacles you have faced?  What are you most proud of your body for doing?

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9 Comments leave one →
  1. May 24, 2010 4:17 AM

    Great post!

    I’m proud of me and my body for overcoming the obstacles I faced early on in life. I think it takes a certain kind of person to rise above instead of wallow and I did that.

    • thedallasceliac permalink*
      May 27, 2010 6:23 PM

      I’m proud of you for not wallowing given everything you went through. I think most people in your situation would.

  2. May 24, 2010 5:40 AM

    A great post. Especially for those out there that are just finding out they have celiacs. I think its great that you focus on what you CAN do vs. what you can’t. BTW- I’ve totally been missing you 🙂

    • thedallasceliac permalink*
      May 27, 2010 6:22 PM

      I’ve missed you too! I’ve been reading every post, just not commenting as much.

  3. May 24, 2010 12:06 PM

    I loved this post, although it did make me sad. I made a similar point in my post about gaining weight (I realize that is not as big of an issue) about how feeling like something is done TO you can make it hard to cope. It seems like we have really similar outlooks – I call it pesimistic optimism – I’m happy about bad things because I know they could always be worse.

    • thedallasceliac permalink*
      May 27, 2010 6:26 PM

      I think the worst part of both of our situations is dealing with the fact that (some of it) wasn’t a choice we made that went wrong. I can move on easily from feeling upset when I know that I did it to myself but it’s much harder to accept it when it was through no fault of your own that it happened.

  4. June 3, 2010 8:13 AM

    What an amazing and honest post. Back in HS I was diagnosed with Celiac through a blood test (not endoscopy) but then decided I didn’t have it. So who knows. I’m definitely not as ill as you but I do think I have gluten sensativity. It’s such a hard diet to follow and I admire you for doing so well on it. And yes you can do a lot of things others can’t, like that 60 mile bike ride!

  5. Kelly permalink
    June 22, 2010 12:20 AM

    Wonderful insight from a wonderful person. It is absolutely the little things in our lives that we often take for granted and miss the most when they are gone. I bet you would have tried to enjoy all of that french bread just a little more if you knew that your relationship with it would be coming to an end! I admire you more than you know for how well you take it all in stride.

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