The Newburyport Blog

Actually readers of the Newburyport Blog haven’t heard from its editor, namely me, for a while, not just because of a post (no pun intended), very long, local Newburyport election letdown (see earlier entry). Something else is “amiss,” but it seems just like “too much information-tmi” for any “discussion” on the Newburyport Blog. So to process this new “amiss” thing, I found starting a new blog, “The Year of Eating Weirdly” to be highly therapeutic.

The newest blog actually takes “comments” (although there are no comments at the moment), figuring that comments on weird eating things would be far less hostile than comments about Newburyport, aka “Cannibal City.” Although this may prove not to be true.

I did not put the blog on my domain name, because I have this notion that it might be enjoyable to be “anonymous,” (although chit chatting about the new blog on the Newburyport Blog sort of destroys that notion.) It has its own domain name, “CeliacSurprise.com.”.

And I went for “easy.” I didn’t use WordPress blog software, I instead opted for “Blogger,” and the people at Google definitely have this blog thing figured out. Good grief Blogger is a breeze to use compared to good old, now going on four years of using WordPress.

So those readers of the Newburyport Blog who apparently are “appalled” at my on going policy of “not commenting for all sorts of reasons” on the Newburyport Blog, would be happy to know that I have joined the legion of bloggers allowing comments and blissful “anonymity.”

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.

My health insurance this year goes up a whopping 37%. It is so high I weirdly feel embarrassed, instead of angry and outraged.

I am one of those people who basically gets to buy their health insurance “retail,” no bargaining power for moi.

Ed Cameron graciously tells me who to email on the Massachusetts State level, and I send Representative Harriett Stanley, the co-chair of the state’s Joint Committee on Health Care Financing an email and Cc it to Representative Mike Costello and State Senator Steven Baddour, my own Massachusetts state representatives. From the article in the
Newburyport Daily News, it is quite evident that Harriett Stanley is well aware of my predicament and others like me, and is doing her dardest to do everything that she can to address the issue. But 37% ??

And, thank goodness one can no longer say that nobody is paying attention to the issue when the top guy, the President of the United States, is all over the place, talking about my exact problem. If President Barack Obama can’t pull this off, I am beyond sunk.

My health insurance sales rep has been great. She and I have worked together for almost a decade to try and get the best possible deal possible. We are now, after all these years, on a first name basis.

Two years ago a “deductible” health insurance plan was the answer. The deductible was high enough, however, that I didn’t go to the doctor (which may be the point of a high deductible??). Could Celiac/gluten free (see earlier entries) have been diagnosed sooner? Who knows. Last (health insurance calendar) year I said “To Hell with it, I’ll pay the stupid deductible,” and it turns out it was a good thing that I did.

This year to bring down the monthly cost, the deductible would be so off the charts that I would basically be paying for everything aside from very large medical bills. And the monthly premiums would not have been that much lower. The health insurance rep could think of nothing else to come up with, so 37%… beyond “Ouch.” And she was embarrassed about not being able to come up with anything except “pretty unacceptable.”

But, as I said to my health insurance rep, when my son will no longer be able to be on my health insurance plan, which is soon, in New York City he would pay roughly two and two-thirds (almost 3 times) more for the same quality of insurance that he is now getting in Massachusetts. My vow to my son is that I would make sure that he would always have health insurance. So, after much research, he will get a lesser product in the state of New York for “only” twice what he would pay in Massachusetts for a much better product. Triple “Ouch.” (This weirdly makes Massachusetts look not so bad.) One could only imagine how badly I would like health insurance reform to pass on the Federal level? Please, please, please.

I begin to figure out how to eat at home with this gluten free, Celiac thing (see earlier entries), but what about my beloved, in a pinch or not even in a pinch, Newburyport take-out restaurant.

I go to my first line of take-out defense, Chinese–Szechuan Taste on Pleasant Street. On one of my Newburyport walks I stop by during a non-busy afternoon time. I look at the soy sauce on the table, it contains “wheat, ” ie gluten. I am too discouraged to ask about how they prepare the actual food. I will come back at another time.

My next stop is my beloved Purple Onion on Inn Street. One of my favorites, their “Roast Beef Sandwich on Multigrain Bread” is obviously out, but what about their “Garlicky Saute Chicken” over rice? I talk to the owner who graciously goes and checks the labels on their tamari sauce–it contains wheat/gluten. I am crestfallen. I will return at a later date and we will check the ingredients in their guacamole, shredded cheese (yes this can contain gluten to prevent caking–good grief), hot sauce and sour cream. Too many labels in one spot for me today.

And I think “Ah hah,” Newburyport, a city that is cuisinewise diverse, has two Indian restaurants, Indian food being naturally gluten free using rice and bean based flours (who knew I would know about this sort of thing two months ago??). I go over to Pleasant Street again, enter the small, beautiful park, Tracy Place and go into Jewel In The Crown restaurant. I explain my predicament and the response is “Not to worry, no wheat.” I tell them that they have now become my new best friend, and I have found my first celiac take-out place. Whew.

And when I go to Jewel In The Crown restaurant for lunch the next day, they could not be more gracious, and are very patient in repeating the phrase that now makes me so happy: “No wheat.” And I look forward to eating every item on their menu, something I would never have done before being told to go on the gluten free diet from Hell. My celiac slump feels slightly less slump like as I try my first dish, “Chicken Saag,” in an introduction to a brand new cuisine. And I am so taken with chicken saag, that I go home to my trusty computer to find a recipe for this incredible gluten free dish and add it to my now beginning celiac repertoire.

PS. Not Your Average Joe’s restaurant in Newburyport has a gluten free menu. I tried their grilled chicken breast, garlic mashed potatoes and roasted green beans, and it was great. It was also very nice to walk into a place and no have to explain this “weird” thing, and to have them completely understand.

One of my great treats this warm season of 2009 has been a Sunday stroll down Federal Street to the Farmers’ Market at the Tannery in Newburyport, MA (see earlier entry). And my discovery of “the pie guy,” who is actually Cape Ann Pies www.capeannpies.com.

Both my grandfather and my grandmother on my Dad’s side migrated from Canada, and one of the favorite family traditions was pie, specifically apple pie, for breakfast. Good apple pie is hard to find, especially after the Baker Canadian version, and I found great apple pie, by the slice no less, from Cape Ann Pies right here in Newburyport, at our very own Farmers’ Market. Eureka.

If I had known that the slice of apple pie that I had in August was to be my very last slice of apple pie, I would have held a wake, I love apple pie that much. And as a result of the diet from hell, the gluten free diet thing (see previous post), apple pie–nevermore.

I stopped my Sunday ritual of heading down towards the mighty Merrimac River in search of apple pie. I could have gone down for all the zillions of “healthy” stuff, organic vegetable and fruits, etc at Newburyport’s Farmers’ Market–that would have been an obvious thing to do. But the thought of “no more pie” had me in Farmers’ Market avoidance.

But one beautiful Sunday in September I walked to downtown Newburyport, down historic State Street and along winding Water Street, full of its historic architecture, and, yes, there at the Tannery was the Farmers’ Market, teaming with its vendors and their customers.

Crossing the street, I made my way to “the pie guy.” I wanted him to know that I was no longer one of his regulars, not because I didn’t love his apple pie, but because of this “gluten thing,” and my apple pie mourning. And sure enough, he had a piece of apple pie set aside, all wrapped up, hoping that I would “come back.” It was a good thing that I had my sun glasses on, because otherwise he would have seen my eyes well up in tears.

When I told him about the gluten free, no more pie, bread or muffins, fun stuff, his response was, “No, it’s a lie!”

“No, this Celiac stuff actually makes sense,” says myself. And I tell him if he ever comes up with a gluten free pie to let me know ASAP. He tells me that he has tried, and we both say at the same time, “It tastes like garbage.”

Next year, or maybe by the time the Newburyport Farmers’ Market comes to its seasonal close, I will march down and scoop up all the naturally, obviously, remarkable gluten free veggies and fruit. But at the moment, since apple pie was one of my “guilty pleasures” and carrots etc. are not, I may need a little more time to grieve the passing of the “loving apple pie and eating it” years.

I open my mailbox, weeks ago, possibly now months ago, checking on when my last posting would be on the Newburyport Blog. There is a fat letter from my doctor. I cannot imagine what it could possibly be. Results from a lab test long since forgotten by moi. Apparently my body is silently destroying itself, ironically because of “comfort foods,” bread, cookies, pasta, crackers–stuff that contains something called “gluten.” I am immediately to go on something called a “gluten free diet.” Accompanying the lab results is a xeroxed list of all the things that are now “verboten.”

I, who always thought I was lucky enough to be born with the “skinny gene,” (see previous post on “shapewear”) actually have something called Celiac, a very unfortunate version of the “skinny gene.” And I who have never had to go on a diet in my life, now get to go on the diet from hell, from this point forth and forevermore, as long as I get to live. Apparently it is the only “cure” for Celiac disease, something that is nowhere close to being on my radar screen.

I immediately sit down to my trusty computer and look up “gluten free” and “Celiac.” Viola, it turns out that one of the grocery stores in Newburyport, MA carries a whole “gluten free” section. I immediately drive North from my abode, and low and behold, there it is, gluten free bread, cookies–I say to myself, “I’ll start with those.” One taste of these gluten free “treats,” out they go, $$ down the garbage hole. (Apparently I am far from alone in this initial outing and response.) I cannot bring myself to go from soft, fluffy bread and crunchy crackers to stuff that has the consistency of sand.

The Newburyport Blog has taught me how to research, and research I do, for weeks, now going on months. My initial research shows that gluten appears to be everywhere, chicken broth, soy sauce, liquorish, cereals, sunscreen, make-up, toothpaste, pudding, gravy, hot cocoa, just to name a few. And I am overwhelmed.

However, it also appears that I not only have a “wicked smart” doctor who has picked up this once possibility, but there is also now a budding gluten free awareness in the USA, and the beginnings of a huge gluten free industry, even as hospitals madly do research in this under-researched item.

And weeks, yes, maybe months after receiving “the letter,” I am not only grateful that this weird thing is not something much, much worse, like a “three months to live” sort of thing, and I am coming out of shock enough to once again post something on the Newburyport Blog.

Editor’s Note:  As a way of processing all of this, I’ve started a Celiac, Gluten-Free blog, The Year of Eating Weirdly–Celiac Surprise.