A colleague of mine just sent me an email telling me she was recently diagnosed with celiac disease. I was going to send her an email about my experience and then I thought,….hmmmm….why should one person be bored and tortured with my tale when I can blog and reach out to others who may possibly benefit from this story?
Twenty-five years ago I went home to live with my folks for a few months. I arrived with a medical chart that said I was suffering from malnutrition and I refused to be admitted to the hospital. This diagnosis was very hard to believe since I had a voracious appetite and was living in the USA. (Okay, so New Jersey isn’t the gourmet capital of the world.) The malnutrition diagnosis, however, came after they ruled out end stage cancer or aids. (Yes, I looked like one of those starving children we are asked to adopt on late night TV). So when they finally diagnosed my illness as “only” celiac disease, it really was a cause for celebration. At least for me.
In order to get back to total and complete health, all I needed to do was stop eating foods that contained gluten. That seemed like a really good deal from where I was coming from. (The next Thanksgiving my Uncle gave a toast, “to Ron…who’s still with us”…and that was the first time I heard they thought I might not make it. This possibility never crossed my mind).
My family showed their concern about my new condition in fairly typical fashion. My mother declared at most meals that she would rather kill herself then live without bread, my father continued to ask me if it was okay to drink orange juice (I never drink orange juice before or since) and my brother, upon hearing me tell someone that this was a well-known and common disease in England, Ireland and Wales, asked, “Why do whales get this”? This is thought to be a genetic disease. Hmmm. Not in my family. We only pass on the good stuff. No one was willing to go out on a limb that perhaps my Grandma Celia(c)….who chugged Pepto Bismol and chewed antacids her whole life may have had this or something related.
At that time, this was considered a relatively rare disease (my doctor said I was the first case he saw) and the stores were not plentiful as they are today with gluten free foods. Just a bit of medical info here. Gluten (from the Latin, glue) pastes down the villi on your intestines and you are unable to absorb nutrients from the food you are eating. There is a host of gastro-intestinal issues and in my case, as it was quite far gone, I had a few other complications (no clotting factor, anemia, edema, etc.). Basically, with celiac you are missing (or maybe even used up) the enzyme that breaks down the protein in certain grains. With a gluten free diet, the “sludge” is removed and the villi, after several months of no gluten, are happy to stand up and wave again. When you ingest gluten, the villi go down for the count and after a certain point of playing stand up and laying down, they stubbornly refuse to get up and fight and you may have chronic problems. (This varies greatly, from cheater to cheater).
I used to be the “go to” person for anyone suffering with gastro-intestinal problems. Today, they have a blood test to determine if you have celiac disease (common in young babies and then in adulthood). The stores are now filled with gluten free foods and many people even chose to live gluten free even if they don’t have celiac disease. Many people confuse it with a wheat allergy, but it is truly not an allergy at all. Since being diagnosed though, I have developed food allergies that I never had before, like throat closing and skin rashes from eating or even touching the skins of many fruits.
Here is what I know:
There is a continuum of gluten sensitivity and intolerance. (Some people will eat foods containing gluten and remain asymptomatic—remember, it’s not an allergy so no “allergic” reaction like eating nuts— although eating these foods may be doing gradual, internal damage). Once you are diagnosed, for all of us, it is a lifelong adherence to a gluten free diet—it doesn’t “go away” or get better. (It’s still an orphan disease and not much money is going towards finding any cures). What you need to know, however, is that gluten is in just about everything we have come to think of as “good” like in “goodies”.
The literature talks about a nun who gets sick from a communion wafer, someone else who can’t lick a postage stamp without getting symptoms, and now there’s the celebrity author, Elizabeth Hasselhorf, (The G-Factor) who keeps two sets of everything in the kitchen (heaven forbid the knife that was used to cut her kiddies sandwiches into triangles could ever be sterilized enough to cut her melon).
I don’t eat anything “overtly” glutinous. No cake, cookies, pie, bread, pasta, pizza, cereal, etc. However, I know there are trace amounts in the condiments like ketchup, mustard, salad dressing, and in some of the sauces, cheese, soup, ice cream etc. that I consume. I don’t chose to live my life at the microscopic level so I’m willing to suffer the potential consequences (long term you are a bit more pre-disposed to certain cancers and there is more internal inflammation) of the minor indiscretions of having trace amounts of gluten in my food. I do this because I don’t want to think about this condition on a day-to-day basis any more than I have to.
It’s not hard to pick your way through any meal, anywhere in the world. I don’t obsess that the bread touched the turkey on a sandwich at a meeting. I just throw out the bread and eat the turkey. There never is a restaurant that doesn’t have something I can eat, and most Asian and Indian foods (my personal favorites and always have been) don’t contain much or any gluten. There is gluten-free pizza at the place on my corner and gluten pasta in many of the Italian restaurants in NYC. I’m totally used to the internal conversation (this is what I would love to have) and then there is what I actually order. There are those people who torment waiters and are just picky, fussy, or watching their calories but that may not be what’s happening when a celiac-er is ordering.
There are smaller things in my life that I’ve made a bigger or noisier deal over than having celiac sprue. There’s not a lot of “poor me” and as I don’t really like sweets, I’m luckier than some and fine with the occasional chocolate, frosting on the cake or just ice cream. It’s really hard for kids and those are the ones I really feel sorry for. Imagine how difficult birthday parties are for them and what it’s like for the other kids in the house who are not gluten intolerant. What I miss most is pretzels…all shapes and sizes. Glutino makes a gluten free pretzel ($7.99/bag) and it’s okay but it’s not a Philly pretzel with mustard or an Anderson’s Bavarian hard pretzel.
I will say that it wasn’t until last month when my dear, sweet friend Terry invited us over for a TOTALLY gluten free dinner that I realized just how deeply I appreciated someone taking the time to pay attention to me and my celiac. She had several hors d’oeuvres and appetizers with at least 3 kinds of crackers and multiple dips and about 7 dishes all meticulously prepared gluten free. She made an amazing cake and desert which she insisted we take home (I ate it as a breakfast bread for a week)
I was so tearfully appreciative of her efforts (thoughts of erecting a statue to honor her) that it made me realize that although I suck it up and go on as if it’s no big deal that perhaps it really has been more difficult then I admit to myself. (I’m not built not to have the things I want so of course, it must be a little hard…at times.)
HINT: If you have a friend or relative with celiac….small homages of gluten free crackers in your house when they come over will be greatly appreciated.
CAUTION: If you don’t do anything to acknowledge their plight and you know they have this disease, they WILL notice you haven’t said or done anything. This could cause endless conversations depending on their personality.
So what can I say, all these years later? Relative to what some people have on their plates, this is really is NO BIG DEAL. However, if they develop the enzyme, synthetic or otherwise so you can eat gluten….I’m taking it. I have also declared that if I find out I’m dying and only have a few months to live, I’m gonna shovel in pancakes, pizza, hamburgers with the bun, and pasta like nobody has ever seen before. And every pretzel I’ve ever denied myself. And, I will make Joey Chestnut look like he’s only grazing when he wins the eating contests.
Or So They Say….Where “Piss Poor” comes from….
September 17, 2011Where did “Piss Poor” come from?
“They” used to use urine to tan animal skins, so families used to all pee in a pot and then once a day it was taken and sold to the tannery. If you had to do this to survive you were “Piss Poor.” But worse than that were the really poor folk who couldn’t even afford to buy a pot — they “didn’t have a pot to piss in,” and were the lowest of the low.
Most people got married in June because they took their yearly bath in May,and they still smelled pretty good by June. However, since they were starting to smell, brides carried a “bouquet of flowers” to hide the body odor.. Hence the custom today of carrying a bouquet when getting married.
Baths consisted of a big tub filled with hot water. The man of the house had the privilege of the nice clean water,then all the other sons and men, then the women and finally the children. Last of all the babies. By then the water was so dirty you could actually lose someone in it. Hence the saying, “Don’t throw the baby out with the bath water!”
Houses had thatched roofs-thick straw-piled high, with no wood underneath. It was the only place for animals to get warm, so all the cats and other small animals (mice, bugs) lived in the roof. When it rained it became slippery and sometimes the animals would slip and fall off the roof. Hence the saying, “It’s raining cats and dogs.”
There was nothing to stop things from falling into the house.This posed a real problem in the bedroom where bugs and other droppings could mess up your nice clean bed. Hence, a bed with big posts and a sheet hung over the top afforded some protection. That’s how “canopy beds” came into existence.
The floor was dirt. Only the wealthy had something other than dirt. Hence the saying, “Dirt poor.” The wealthy had slate floors that would get slippery in the winter when wet, so they spread thresh (straw) on floor to help keep their footing. As the winter wore on, they added more thresh until, when you opened the door, it would all start slipping outside. A piece of wood was placed in the entrance-way. Hence: a “thresh hold.”
Sometimes they could obtain pork to add to a stew of mostly vegatables, which made them feel quite special. When visitors came over, they would hang up their bacon to show off. It was a sign of wealth that a man could, “bring home the bacon.”They would cut off a little to share with guests and would all sit around and “chew the fat.”
Those with money had plates made of pewter. Food with high acid content caused some of the lead to leach onto the food, causing lead poisoning death. This happened most often with tomatoes,so for the next 400 years or so, tomatoes were considered poisonous.
Bread was divided according to status. Workers got the burnt bottom of the loaf, the family got the middle,
and guests got the top, or the “upper crust.”
Someone walking along the road would take them for dead and prepare them for burial. They were laid out on the kitchen table for a couple of days and the family would gather around and eat and drink and wait and see if they would wake up. Hence the custom of “holding a wake.”
Or so they say…..
Tags: Communication, Just for the Fun of It, Words
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