Published: 19/01/2023 Tags: Stories

Going gluten free has allowed me to stop taking all my GI meds

My genetic testing came back indicating mcEDS Type II.  I am homozygous with the DSE variant.  I am 69 years old and finally know what has been wrong with me all my life.  My first appointment with a gastroenterologist was when I was 6 years old.  I would see one on an emergency basis throughout my life but have been under the regular care of a GI doctor for 11 years and was recently diagnosed with Gilbert’s syndrome.

I began having dislocations of my knees when I was 4 years old.  I’ve had to have special shoes since I was a child due to a high instep. When I finally saw a podiatrist about 5 years ago, I learned that my feet are deformed, as are my knees.  I saw an orthopod when I was a teenager, who waited to do surgery until I was 18.  I fell downstairs, in front of a truck, and under a bus due to frequent (multiple times a week) dislocations.

I never attended a PE class during high school or college.  I had a doctor’s excuse due to the dislocations.  I have had skin issues for which I saw multiple dermatologists (for eczema and dermographia) and I itch all the time. I am subject to rashes and frequent cuts that appear out of nowhere. I find myself bleeding having no idea what happened.  I used creams, and one doctor just said to use moisturizer.

I had surgery when I was 18 to try to keep my left knee stabilized.  It worked for the most part, but I continued to have dislocations.  I learned to walk in a way that people would comment on, but I stopped falling, for the most part.  I ruptured three of my peroneal tendons seven years ago.  My MRI shows signs of a fourth peroneal.  I have been limping ever since.  I began seeing an integrative physician due to severe back and sciatic pain.

After a year of diagnosis and test after test, an MRI noted that I have congenital lumbar stenosis and a shortened cord.  I had nutrition tests to see if vitamin deficiencies were contributing to my nerve pain and discovered that I suffered from malabsorption and had many nutritional deficits, and the following genetic and blood tests lead to a celiac diagnosis.

Going gluten-free has allowed me to stop taking all my GI meds and reflux is very infrequent now.  I have a Hiatal and another inguinal hernia, plus a cyst on one kidney.  It was following the Celiac diagnosis that I sought out additional genetic testing which indicated EDS.  It explains everything and seems to be familial, as I have been in contact with my cousins who have reported related issues.  It took 69 years!

None of the specialists saw beyond their specialties.  I felt like all my primary physicians, until the integrative physician, thought it was all in my head.  Until I went to an integrative clinic no one looked beyond the symptom and tried to figure out what was wrong with me.  It’s good knowing.  But there is something wrong with the American approach to medicine and all the specialization when something that has had such a major effect on my quality of life is just considered to be “benign” and takes so long to diagnose.

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