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Marykay's Story


About 6 years ago, I was living in Chicago with my husband and three children.  Everything was going well, until just before Thanksgiving. I started feeling nauseous every time I ate. It got so bad, I lost 15 lbs. I looked sick. I felt sick.  

While the nausea continued, a new health issue began.  Stomach pains. Bad pains. Pains so bad I had to get on my hands and knees on the floor just to be able to breathe. My family would look on with such sadness. They didn’t know what to do to help. I just told them, don’t worry, it’s just really bad gas, it will pass. And it usually did.

This would happen almost every day. At times, it would happen while I was driving. It got so bad one time that I had to pull over and get on my hands and knees in the driver seat. 

This went on for about a year. Then another health issue started: bowel problems. Most days, this prevented me from leaving my house. 

By this time, I couldn’t take it anymore. I made an appointment with my general doctor.  “Everything looks good,” he said.  “Don’t worry about things. You’re just stressed, living in a new place, no family, a husband who travels. It’s no wonder your stomach is upset.”

Months went by and nothing changed, and I really wasn’t feeling stressed.  Now, I added to my list of ailments horrible fatigue. I just couldn’t get out of bed. I would drink three cokes a day just to stay awake.  It was so bad I thought it had to be narcolepsy. 

So off to another doctor. This time an internist. They will know what’s wrong with me because this just can’t be normal, I figured. The result of my appointment? A diagnosis of chronic fatigue syndrome and IBS. Well, this sounded reasonable, but unfortunately for me there was no magic pill that could take it all away.

More time went by. After almost 2 1/2 years in Chicago, my husband accepted a promotion for us to move back home.  I was so excited! 

I continued to go to doctor after doctor, seven in all, trying to still figure out why I felt so bad. No one could give me answer.  Oh wait, I did get another answer: “It’s all in your head.” And I   actually believed it. 

Then one day, my eye started to feel dry. Not just a little, but a lot. It felt like someone dumped sand in my eye. So, off to the eye doctor I went. Diagnosis: dry eye. “You’re 40 now. This is typical,” the doctor said. “Use some drops and you’ll be fine.”

It was good to be home. I was near family; the kids were back in their old school with their old friends.  Life was good. Except for my health.

At this point, I stopped complaining and just began living with my issues. If there was nothing I could do about, then I’d just smile and go on. And I did, until one day when I noticed my stomach swelling. Strange, I barely eat, I can’t drink (it makes me sick) so why the swelling? Could I be pregnant? Or could it be something worse?

I went to the doctor. It’s either cancer or your gall bladder, the doctor determined. I went to the hospital for testing: Negative.    Now what, cancer? An ultrasound of my stomach: Negative.  Now what? How could I have this big tummy and not have put on any weight? “IBS,” the specialist said.

I truly felt like I hit 40 and started falling apart. Could it get any worse? Yes. I began having heartburn, nothing a little Zantac couldn’t handle. But then Zantac stopped working. No more doctors. I’d had it.

Time went on, and I began getting this incredible urge to chew on ice. Not so bad. It was better than eating, and it didn’t make me sick. This went on for 8 months. By the end of 8 months, I was chewing on 8 lbs. of ice in 2 days. I knew this couldn’t be normal. The last time I did this, I was pregnant with my youngest and had anemia.  Could anemia be the problem? 

By this time, my reflux had gotten so bad I was throwing up.  The people at the gas station must have thought I was crazy as I was there every other day buying ice. I became lactose intolerant; I was exhausted all the time; I had bad headaches; I was losing more weight; I looked pale and drawn; my eyes were so dry I was using prescription drops; I had ulcers in my mouth; I looked pregnant at times; my brain was in a total fog and I couldn’t concentrate; and I was still running to the bathroom 8 to 10 times a day. I must be dying. What else could it be?

One last time, I went to see another doctor.  I threw it all at him, and left nothing out. I insisted on an iron test and begged for a prescription for the reflux . 

Finally, in June 2010, a test result finally showed something. I did in fact have anemia.  Really bad anemia.  So bad, I was only a few weeks away from needing a blood transfusion.  But why?

I insisted on being referred to a specialist, and went to a hemotologist. Within 5 minutes of speaking to him, he said, “I think you have celiac disease.”  “Silly what?” 

Sure enough, the blood tests came back positive. But to confirm, I needed to be scoped. Once that was done, I had an answer. This is what caused me 6 years of agony. But why did it take so long?

Life after my diagnosis would never be the same.  My world, my family life, was flipped upside down.  But, I have my answer and I’m happy to say, within 2 months of going gluten-free, I am 100% symptom free.

While I feel somewhat deflated about the foods I’ve had to eliminate, I am happy that I have a disease that can be 100% controlled by me alone.

I am not resentful, but it’s hard sometimes not to feel a little sorry for yourself. It’s been only 6 months since my diagnosis, and I’ve learned that with a lot of patience, support from family and friends, and creativity with cooking, the gluten-free lifestyle is quite manageable.

You know the problem. Now be the solution.

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