I will admit that I was hoping that I would turn up some fellow Newburyport and Massachusetts North Shore gluten free/Celiacs (see earlier entries) by writing about the subject on the Newburyport Blog.
And voila, so far someone local who makes gluten free cookies and a fellow Newburyport Celiac has contacted me. Thank you! But according to the statistics, 1 in 133 people have Celiac disease, there have to be a whole lot more folks out there–and I could sure use your help.
One of the things that I have discovered, is that although gluten free awareness is spreading by leaps and bounds, my experience of being told to go on a gluten free diet (no wheat, barley or rye) immediately, which is life altering and overwhelming, and then pretty much left hanging with no recommended support system, is by and large the norm.
From what I can make out, Beth Israel Hospital has a research and Celiac center in Boston, and Children’s Hospital in Boston has support for families with Celiac disease, but Massachusetts appears to be lacking behind many, many states in Celiac support. (And for a state full of cutting edge medical stuff, this seems odd.)
And I think our health care system doesn’t help much either. In researching why in the world my health insurance could possibly go up 37% in one year, I discovered that doctors will only be paid for office visits, not phone calls, much less emails. One of my doctors that I have known for years, recently told me that he now has to become a “businessman,” seeing as many patients as possible in a day, instead of spending the time talking with them, making sure that he knows them, and helping them with individual problem solving approaches, because otherwise he will go out of business. Discouraging to say the least.
And because Celiac is just beginning to be researched, it appears that a person would be “lucky” just to be diagnosed, but having a “Celiac team” to help figure out how to adjust to this weird thing, in most cases seems elusive.
I’m all for having a Newburyport or Massachusetts North Shore Gluten Free/Celiac support group. I’m sure there are a whole lot of people beside me who could use one too. And although there are no “comments” on the Newburyport Blog (see many earlier entries), I do have a contact email–info (AT) marybakerart.com.