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Tom's Story

 
7/20/2011

At age 48 I was told I have villous atrophy caused by celiac disease.  I had been on B12 shots for 5 years and iron pills.  My family doctor did a few tests to find out why I needed B12 and iron, only to give up, brush it off, and just keep giving me pills and injections.

I have been sick my whole life and nobody put it together.

When I was very little I remember having horrible pains in my knees.  This was probably around the time bread was introduced.  I was very small, but still remember the pain in my joints and being hauled from doctor to doctor, having X-ray after X-ray and then told it was just growing pains and I would grow out of it.  To this day, my joints ache and I cannot bend down at the knee without both of them making a very loud cracking sound.

The bowel problems, bloating, pain and bleeding were almost unbearable.

It’s been going on my whole life. Constant cramps, feeling like you have to go all the time only to sit and sit with pressure and pain and have nothing coming out.

Then the diarrhea and blood started.

I have spent a lifetime of embarrassment. When I visited my wife’s family cottage, there was one bathroom in the middle of the place. It was very hard to hide my problem.

I have been out to many business lunches and family functions where I suddenly feel wet and after running to the men’s room find my underwear full of blood.  I end up cleaning up in a public bathroom stall, throw away my underwear, and return to the table, trying to act ok.

Whenever I am on a plane I take all the air sick bags I can get so I can keep them by the toilets in the house because sometimes the cramps and diarrhea got so bad I would have to throw up at the same time as the diarrhea.

I went to my family doctor, who sent me to my first of many gastroenterologists. I have drank more barium and had more barium enemas and colonoscopies than I can count.

Most gastroenterologists told me I needed to eat more fiber, and they put me on bran and Metamucil. Not great advice for someone with celiac.

The bleeding was so bad they sent me to a clinic that specializes in hemorrhoids. They told me I did not have hemorrhoids, but the lining of my rectum was irritated and bleeding and that I should give up coffee, cheese, beer and spices.

I am lactose intolerant and celiac, so giving up beer and cheese actually made me feel a "little" better, but not 100%.

I think the 5th gastroenterologist I saw at age 48 saw that my small intestine was trashed and put that together with my B12 deficiency and came up with celiac and the resulting lactose intolerance. I think I could have fallen over when he asked “Have you ever had a problem with wheat?”

One year gluten-free and dairy-free and I feel great. I cannot believe I lived for 48 years feeling and going through what I did.  

Now the slightest bit of gluten or dairy is almost incapacitating, yet for years I felt like that was "normal."

It ruined vacations, honeymoons, kids’ parties, etc. It was hard to put on a happy face and be fun when you just put your blood-soaked underwear in a public restroom wastebasket.

I left so many doctors’ offices in tears because they hadn’t found anything wrong and told me it was stress.  If a doctor ever tells you it is growing pains or stress, see a new doctor.

It’s been a long road.

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