Wednesday, September 10, 2008

Moment of Weakness

I feel like I am slowly falling apart. And I'm not sure what the cause is. Today is my 9-month anniversary of being gluten free. I am almost more confused by celiac disease than I was 9-months ago, or even 5 years ago when I was diagnosed!

I feel like this is a constant struggle. Sure, give up gluten and get better. But trying to figure out what has gotten you sick is rough. Is my stomach ache gluten related or is it a bigger problem? What is caused by something accidentally getting in my diet, and what is something that I should be asking doctors about??? It's so hard sometimes!

I find myself consumed with these thoughts. All I think about is food. What I've eaten, and what I am going to eat. I get sick and all I think about is the everything that has come in contact with my mouth in the past 3 days. What was it?? I don't know, I just know I feel like shit! I would say that 30% I figure out what glutened me. But the rest is just a mystery. I feel like I am walking up the wrong side of an escalator. Am I really making any progress?

I've had a terrible upset stomach and on and off stomach cramps for like 2 weeks now. So, I am obsessing. But how can I narrow it down? Sometimes symptoms from a glutening last for a day. Sometimes 3 days. Sometimes longer. How do I know that I didn't eat something 2 weeks ago and the symptoms just haven't gone away yet? How can I possibly narrow it down and remove it from my diet? And don't even get me started on cross contamination. Did something in the food get me, or did something that touched my food get me?? UGH!

It just seems impossible.

Don't get me wrong, I'm not giving up. Not now, not ever. I'm am on the gluten-free train for life. I'm just really struggling right now because I am having new health problems pop up and don't quite know what to make of them yet.

I am having contant migraine headaches. I have fatigue that makes it hard to get motivated to do anything. I have weakness in my hands so bad that I have trouble opening a ketchup lid, or a jar that's already been opened. I can't focus or concentrate on anything. It's been like this for at least 2-3 months. Finally I made a doctor's appointment and got the brush off. Oh yeah, sure, we'll run some blood tests...but it's probably just rebound headaches from taking too much exedrine. I tried everything before making that stupid doctor's appointment, because I hate going in so much. I gave up caffeine (to make sure it wasn't triggering headaches), I started drinking water (to make sure it wasn't caused by dehydration), and stopped taking all pain medications (to eliminate possiblity of rebound headaches), and yet they still brush it off as if I am making a big deal out of nothing. I have a strong history of daily migraines that was a battle to figure out when I was still in high school. They went away and I just assumed they were caused by gluten consumption, pre-diagnosis. But now I am 9 months gluten free, and they have returned with a vengence. Shouldn't my history with this account for something??

The brush off at the doctor's office really has me second guessing myself. How do I know that there is some kind of hidden gluten getting into my system causing this? Could this be caused by vitamin deficiencies? Could an associated disease or disorder be presenting itself? Or, God forbid, could I have other food intolerances or allergies that are just now surfacing?

So I am waiting it out, just like the doctor suggested. I'm waiting to see if things get better or worse, and I am waiting to hear back on my blood tests. If the blood work doesn't show anything, I don't know what I am going to do. Switch doctors? Try elimination diets? Go to a chiropractor?

I'm not sure what to do. I am confused, discouraged, and tired of explaining that "I just don't feel well and I can't help it."

On a brighter note, I made gluten free chocolate cupcakes that I am going to go frost and enjoy.


Marlow said...

I gonna be thinking about you today! Maybe you could try a fasting diet of sorts for a few days or something...however, I'm not a huge fan of those. I just know that everytime I get glutened, I feel a strong urge to do a salt water cleanse to get it all out!
I wonder if there's something about this time of year. The past two days I have wanted to cheat SO BADLY. Which is strange because I hadn't felt this urge at all. And of course when it gets down to it, I know I won't cheat, but man oh man a mozzarella stick would be good.

Endless Possibilities said...

I wish that I knew what to say. I hope that you feel like yourself soon. You know that I can feel your pain...let me know if you need anything. I love ya.

GF Steph said...


I've thought about doing some sort of fasting diet because I feel like I just need to flush out my system! But I know I don't have the will power to do just liquids for several days! I have quite the appetite and have to feed the beast! Lol. And man, what I wouldn't GIVE to eat a mozzarella stick! Yum!

Thanks for the support to the both of you. I know this'll pass, it's just been one blow after another lately.

Allie said...

hey steph --- hope you're feeling better... i like your new fall layout!

tonya said...

Your combination of symptoms sound so similar to mine before I was diagnosed with fibromyalgia. The almost constant migranes, the fatigtue, and the pain in the hands. What precipitated mine and I believe caused my fibromyalgia was a severe and debilatating accident. Only a rhematologist can properly diagnose fibromyalgia and it involves a body check of over 18trigger points on the body. Many people have found relief with the salycilate free diet that you can information about on the internet. Giving up any white processed foods like sugar and dairy usually help. Good luck and hope you feel better soon. Thanks for the snickers cake my Mom loved it. Tonya at

dj56v said...

I don't know very much about celiacs disease, but since you are having problems with the foods you eat, sometimes dairy products can give you horrible stomach pain and diarhea. I used to be able to eat ice cream, have anything with milk and eat cheese, but now that I'm older I have developed a lactose intolerance for dairy and need to take Lactaid caplets before eating any dairy. It helps most times, but I just stay away from the dairy when I can. I have to buy lactaid milk. I had no clue what was going on...that this was the problem...for a long time, until someone brought it to my attention. About your doctor, I would get another opinion! And if you don't like what the other is telling you...get another one. You are the person who is suffering from this. Something is obviously wrong so find a good doctor who really cares about helping you!