Thursday, November 14, 2013

Celiac for me

Our son was diagnosed with Celiac during his fourth year. His antibodies were high. He was put on a gluten free diet, including oats at that time. We were blessed to have a neighbor and now friend, Deb, who was able to mentor us down this road. Deb and i were able to take this information and teach classes to our area Autistic society 15 years ago.
As we read more and more about celiac, i was positive, i too, had it. At this point i was 90% gluten free. I would eat it when there wasn't another option available, and at that time, people didn't know what it was and felt i was making it up, doctors included. I was scheduled for my third sinus surgery but didn't need it just be reducing my gluten intake, as a matter of fact, i haven't had a sinus infection since then. However, during those years i had my gall bladder and appendix removed. I had gone to a gastrologist for IBS. I asked to be tested for celiac. The antibody test was slightly elevated, but not elevated enough to be considered celiac. I was given a colonoscopy and polyps were found and a prescription for IBS. I never filled it.
Seven years ago, i began to become anemic with bruising (softball size bruises) on my joints. I was taking 2 hour naps and could hardly move one summer. After a couple of months of not being able to be my energetic self or donate blood even on iron pills, i went to the doctor. There i was diagnosed with lymphoma based on my total ferritin levels which had dropped to below 4. My liver wasn't able to store iron. Before going to an oncologist, i went to another gastrologist who believed celiac was a disease. He tested my antibodies, slightly elevated as before. He also ran the genetic marker test. I have two copies of the gene, meaning i received it from both my parents (who are in denial as are my siblings) and i had lesions but not dead cilia. At this time i also had a colonoscopy and had polyps removed.
This doctor told me 90% gluten free isn't good enough, not only did i need to be 100% gluten free, but also remove dairy and soy for 6 months. After six months i could try to add them back.
After 6 months i did try to add them back, neither are my digestive tract's friend but i can eat a limited amount occasionally.
My last colonoscopy, no polyps.
Looking back on my symptoms i was classic celiac. I had digestive issues (chronic diarrhea as an infant and constipation as an adult), failure to thrive, allergies, asthma, sinus infections, late starting of my menstruation (just shy of being 16 years old), endometriosis, fertility issues, miscarriages, twins pregnancies were the only way i could maintain a pregnancy, a ferocious appetite and slim, early menopause (mid forties), gall bladder and appendix removed... As you read this, not just digestive issues. Other non-digestive issues are cancer, mental health issues (depression, anxiety, bipolar, schizophrenia...), diabetes, ear infections, loss of tooth enamel. Did you know that most people with downs syndrome also have celiac?

This week i have been listening to the Gluten Free summit at . What a gift of confirmation for me and a blessing to those who are starting down this road.

Here are some other wonderful links:
This link is a wonderful resource for information from brands of foods, medications, general information, newsletter. The link is

This link offers monthly free webinars, newsletters, and information  to assist with living with Celiac. The link is

This is a wonderful resource for those who need help changing to the celiac lifestyle, including finding a support group near you. The link is

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