Our Celiac Story…A Final Word
Little Bo Peep
The verdict is still out on little Bo Peep. To minimize the risk of cross-contamination, we all eat gluten free at home (but I get my “fix” when I’m at work). Bo Peep was still nursing exclusively when we did have gluten in our home, but she never had a reaction to it in my breastmilk the way that Miss Muffet did. I’m not in a hurry to find out, especially since we all eat gluten free anyway. Time will tell.
A Final Word
Our story is not unique. I’ve met a number of folks with celiac disease/gluten intolerance in the past two years, and they all have similar stories: living with disease symptoms for YEARS before getting a diagnosis. Like us, gluten intolerance was not considered by their family physician or specialist. Many of them just happen to BE physicians, or their immediate family (just because those are the circles my husband and I happen to be in with our jobs). That’s pretty incredible to me, and is illustrative of just how tricky identifying celiac disease can be.
One developed debilitating joint pain over several years, sought the help of numerous specialists, and ultimately lost her medical practice (and subsequently her home). An acupuncturist suggested she go gluten free; her joint swelling and pain resolved, and she is now able to practice medicine again.
Another retired physician, now a medical school dean, didn’t realize he was gluten intolerant until hearing my husband’s story. His joint pain and “irritable bowel” resolved once gluten was eliminated from his diet (and he lost 40 pounds to boot).
The wife of a medical pathologist had a number of vague and unexplainable symptoms that essentially disabled her. After seeing numerous specialists and desperate for an answer, she sought a naturopath who recommended she try eliminating gluten. She was able to quit all of the numerous medications she had been taking over the past 10 years prior.
I hear stories like this all of the time. I know of only ONE person whose gluten intolerance was first suggested by a physician.
Does that mean I distrust physicians? No. The medical community’s knowledge about celiac disease/gluten intolerance continues to grow and evolve. It always takes time for new findings to spread throughout ANY field.
Does that mean I recommend taking matters into your own hands if you suspect you are gluten intolerant? Please don’t. I know, I know… it sounds all “do as I say, and not as I do,” but there are many reasons to consult a physician first. For more information, I highly recommend the materials and videos available at the University of Maryland Center for Celiac Research and the Celiac Disease Foundation.