Quantcast Amy's Story | NFCA
Skip Navigation Links

Amy's Story


I have been sick for as long as I can remember.  I was that kid in school who puked all the time.  I would have nightmares about drowning and would wake to find myself gagging on my own puke.  

My grandma would tell stories of how skinny I was when I was born, accusing my unwed mother of trying to starve herself to hide her pregnancy. My mom always denied it. I was 23 inches but barely 5 pounds.  I would break out in massive hives.  My grandma, a nurse, would assume it was poison ivy, since we lived in the Ohio River valley.  In pictures, I looked pasty and skinny.  

I ate potting soil all the time.  My grandma would have to hide it from me. I threw violent tantrums over nothing.  I felt miserable and unhappy as a child, and living in a family of dysfunction only masked my symptoms.  My stomach hurt all the time and my grandma would give me enemas because she was sure I was constipated.  I hated it so much I quit complaining. 

I was rejected from preschool because the teacher thought I was autistic.  My grandma didn't know what was wrong with me, but she knew I wasn't autistic.

As I got older, I learned how to control my vomiting.  I would will it to stop, which led to the other problems.  It had to come out somewhere.  Because of our family troubles, I never complained.  I only wanted peace, which happened rarely. I wanted to play sports, but I was always too tired.  I couldn't keep up with the other kids. I barely passed gym class. I always felt like my bones were breaking and my joints were frozen.  I was a "late bloomer" and began passing out when I got my periods.  

Despite all of these symptoms, I graduated from high school, got married, and had 2 kids.  My pregnancies were horrible; I was terribly ill. My doctors (military hospital doctors) joked that my babies were healthier than I was.  

The first doctor to suspect something was wrong was actually an Air Force psychiatrist.  I had been "diagnosed” with postpartum depression, but the psychiatrist wasn't convinced.  After running a nutrition & hormone panel, he knew something was wrong, but he wasn't sure what.  After that, it was still 13 years before my doctor did the celiac blood test.

I have been "diagnosed" with everything:  cat scratch fever, German measles, migraines, STDs, bacterial infections, various forms of depression, appendicitis, various topical & food allergies, even schizophrenia.  Even though I am gluten-free, I still suffer from symptoms.  My GI doctor says my intestines are damaged, I have high cholesterol, and I have inflammation throughout my body.

Now, I exercise regularly, take lots of supplements and eat small meals. I do feel better, and the "brain fog" is gone.  I use cortisone creams and Calmoseptine (a prescription ointment usually for protecting drain wounds) for the rashes.  I also bathe with dead sea salt mineral soap and use Eucerine brand lotions for the rosacea and rashes.  I drink a B-complex sugar-free energy drink to get me through the day without getting too tired.  

I hope my story can help others realize that it’s not always "in your head."

Related Content:

You know the problem. Now be the solution.

Restore Health. Reclaim Lives. Donate Today »

  • Have you or your family members been diagnosed?
    Complete our celiac disease symptoms checklist today to find out if you are at risk of having celiac disease or non-celiac gluten sensitivity ('gluten sensitivity').  We can help improve your quality of life!
  • Stay Informed!
    Join our monthly newsletter to receive news, updates, and tips for healthy gluten-free living and information about celiac disease. Sign-up for the monthly e-mail newsletter