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Donna's Story


About 20 years ago, I started having minor problems that did not seem related. I kept telling my doctor that I felt that all my problems were related, but he did not think so. He attributed my problems to the fact that I was getting older.

My problems, in the order they developed, were:

1. My throat hurt and my voice sounded crackly. The problem comes and goes for no apparent reason and does not feel like a regular sore throat. A throat specialist stuck a camera down my throat and decided I have “irritated vocal chords.” No cause was found.

2.  The margins of my lower eyelids became red and irritated and crusty material matted the lashes. The eye specialist decided it was blepharitis and gave me a salve. This made no difference, so he decided it was something else and gave me another salve. It made no difference either.

3. Small, itchy pimples popped up on my legs and wrists. They look like poison oak. They appear and may disappear again in a day. They may come back again and often do so in the same spot. If I scratch them, they get inflamed and never go away. The dermatologist gave me a salve, but it did not help.

4.  I often had trouble with indigestion and burping, but no heartburn. The GERD specialist wanted to do a test where they run a tube down your throat and look at your digestive tract. I really did not feel that my problem was acid reflux and I refused to have the test.

5. All my life I have had bowel problems and was told I had irritable bowel syndrome. This had gotten worse as I have gotten older.

The bowel problem got so bad that I could not leave the house in the morning and would have at least one accident per day. I could not control my bowels and would soil myself and not even know I had done it. At this point I got on the internet and started researching bowel problems. I read about celiac disease and knew I had found the answer when I read that it was caused by heredity. My mother had the same bowel problem for the last 20 years of her life!

I did not want to be sent off to another specialist, so I decided to just stop eating gluten. After 2 weeks, my bowel problem was much better. I went to my doctor and told him that I thought I had celiac disease. He said he did not think so, but sent me for the blood test. Three weeks later the lab called me and told me they had lost my blood sample.

The doctor told me that since I had not eaten any gluten for 5 weeks, I would have to go back to eating it for 2 weeks and then be tested again. I decided that I would not do it, so I have never been diagnosed! I did go back to the dermatologist and had him take cultures of the pimples on my legs and they came back negative. The lack of proof does not mean that I do not have celiac disease, because I had not been eating gluten for several months. [Note: It is important to continue eating a normal, gluten-containing diet before being tested for celiac. Eliminating gluten prior to testing could affect the accuracy of test results.]

I have been gluten-free for 1 year, and all of my symptoms have gotten better. I am hoping that with more time they will all go away. I am spreading the word about celiac disease to others. Thank you for your wonderful website.

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