I was born in 1948, and raised in West Bloomfield, WI; a farming community west of Appleton. I am the youngest of four, and the only one of my siblings to be born in a hospital. My parents were nearly 100% German.
This is my Celiac life story. I am assuming that you are reading this because you have Celiac disease or suspect that you have it. My Celiac symptoms are not those typically experienced by Celiacs. I hope this narrative helps you.
I was biopsied October 30, 1997, and given the diagnosis November 14. I have tried to be GF ever since, and have never knowingly cheated since the burger and fries I ate on the way home from receiving my diagnosis.
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I was born in 1948, and raised in West Bloomfield, WI; a farming community west of Appleton. I am the youngest of four, and the only one of my siblings to be born in a hospital. My parents were nearly 100% German. |
At about age 8, I experienced three unusual symptoms: 1) my legs ached when I was tired, 2) my left foot had two golf-ball diameter sacs which puffed up at times, and 3) I got nosebleeds after taking One-a-Day vitamins for at least a week. I do not recall having any of the classical Celiac symptoms while growing up, nor in my 20's or 30's. I mentioned the first two symptoms to our family doctor back then, and he said he did not know what was causing them. He did not refer me, and I just lived with the symptoms. I stopped taking vitamins.
The leg aches are most accurately described as a dull ache which seemed to originate from within the bones, just above and below my knees. I only got them when I was tired, generally in the evening. Three things seemed to help -- standing up or walking; crouching forwward while sitting, with my elbows on my knees; or lying in bed on my stomach (lying on my back made it worse). After one week of being GF, I no longer noticed the leg aches, and to this day they have not recurred.
The sacs on my left foot were on the inside, just above the bottom of my foot, and also on the bottom in the middle of my arch. They were each about the diameter of a golf ball, and 1/4 to 1/2 inch thick when they acted up, which was always simultaneously. The swelling was worst in the morning when I first got up, causing me to limp because of the pain of adding weight on them. It also tended to be worse around Thanksgiving and Christmas holidays, but I did not feel that I could correlate the swelling with any particular cause.
The pain from the sacs tended to get worse as I aged, and I mentioned them to my GP a couple of years ago. He suspected that I pulled something, and he prescribed Naproxen, which did not help. I continued to live with the pain. After going GF, the swelling in the sacs is much less frequent, and I hardly ever notice pain from them.
The nosebleeds continue to be a mystery. I resumed taking multivitamins in my 20's, and they recurred quickly, so I stopped taking them. In August 1998, after almost a year of being GF, I started taking Nature Made daily combo, and so far have not had any nosebleeds.
At my annual physical in October 1996 (a year before I was diagnosed), my GP said my Iron was low. I went through the typical, easy tests to determine if there was any internal bleeding. The test results were negative, and he recommended we wait a year and retest.
At my annual physical in October 1997, we repeated all of the easy tests for internal bleeding. He said my Iron Stores were 34 (should be 45), and we had to now do something about it. He referred me to a GI specialist who redid the easy tests and then scheduled and performed the upper and lower biopsies. My tissues appeared normal and pink (healthy) during the procedures, but the microscope examination of the tissue samples revealed villi damage. The diagnosis of Celiac-Sprue disease was indicated. During recovery, he told my wife that he truly expected to find cancer, but found no evidence of it. I recall only about 10 seconds of the procedure; seeing the image on the monitor while the scope was at its farthest reaches of the lower exam, and the nurse then spraying my throat just prior to the upper exam.
I was given the good-news/bad-news a couple of weeks later. The good news was that I had a diagnosis and that I didn't need pills or surgery to get better and live a long, healthy life. The bad news is that pills or surgery would not cure me -- I had to change my diet, for the rest of my life. I was also told to take Ferrous Fumerate for a few months, to build up my blood.
I gained 10 pounds in the six months prior to my diagnosis, and lost 15 pounds in the six weeks after diagnosis. These symptoms are opposite from those experienced by most Celiacs. My weight remained constant at 180 during all of 1998, but I put on 5 pounds during 1999 due to the increasing abundance of GF goodies and recipes I have found, and maintained about 185 during all of 2000. My cholesterol had been about 160 for most of my life, but became slightly elevated at 205 during 1999 and remained there in 2000, although my "good" cholesterol is also higher and resulted in a better (lower) ratio.
In February 1998, I was given another upper biopsy, and it revealed significant healing. This confirmed the Celiac-Sprue diagnosis, and that I had indeed been eating a Gluten-Free diet.
In the first few months after going GF, accidental ingestion of gluten affected me within 30 minutes to 2 hours. Now, after a year, it tends to take longer -- 2 to 24 hours. I'm usually back to normal the day after that. I haven't noticed the malaise reported by some Celiacs after ingesting gluten, but I do notice a lesser feeling of well-being.
Through reading postings on the St. John's list server, I learned that many Celiacs take multi-vitamins. I began taking them in August 1998.
I have noticeably more energy now, as compared to most other points in my life, and my GI system has settled down into a much less roller coaster pattern.
In the mid-60's, I was diagnosed with a mild heart murmur. It has not worsened since then.
In 1989, I experienced occasional chest pains which were thought to be caused by my gall-bladder. Based upon an ultrasound examination, my physician characterized my gall-bladder as containing "gravel". It was removed, along with my appendix for insurance. The pains did not go away.
In 1990, my request for a job transfer was granted, and my wife and I moved from the wonderful (but cold) state of Minnesota to the wonderful state of North Carolina. I lived with my chest pains, because we were caught up in the move and I couldn't be bothered with a month off work. I took bottles of aspirin.
In 1991, I finally resumed diagnosis for my chest pains, first seeing a Chiropractor. After a few months of adjustments, I was referred to Dr. Robert Allen for an MRI. He found a benign, T2 intradural extramedular schwannoma tumor attached to my spinal cord. It was about the size of a cocktail hot-dog. Doctor Allen did a fantastic surgical job! The pain was noticeably absent from the moment I regained consciousness after surgery, and I have no ill effects from the surgery.
In 1996, I experienced bouts of dizziness, and my doctor discovered that I had low thyroid output. I have been taking Synthroid 0.05 since then. This is the only prescription medication I now use.
In 1997, I was diagnosed with Celiac Sprue.
After 9 months on the GF diet, I noticed increasing bouts of eyelid twitching, tingling in my arms and feet, and finger aches. I started taking vitamins, and within four months, all three symptoms subsided completely. The finger aches begin to return if I skip taking vitamins for a week.
After 13 months on the GF diet, I had a general physical and mentioned the three new symptoms above to my GP. He tested my blood for B-12 levels, and found it to be normal. I convinced him to perform a bone density test, the results of which were within normals for my age.
Based upon my wife's comments, I have always exhibited noticeable hair loss in our shower and on my towels, although my scalp hair seems to be replacing itself and I still have a full head of hair at age 50. I also chipped a front tooth this year, and cannot associate it with any event. My skin (especially hands) is somewhat dry in winter. I noticed additional dryness in the late 1980's while still in Minnesota, and some improvement after moving to Raleigh in 1990.
My low Iron Stores test result in 1997 prior to diagnosis was a definite change. I am a regular blood donor (4 gallons), and one time in the 1980's I was almost rejected because my iron was right at the upper limit for donation. I stopped donating in late 1997 (right after Celiac diagnosis) and resumed in May 1999.
I am not aware of any! The younger of my two sisters was diagnosed with Crohn's about 15 years ago, and is in remission. There are no Celiac symptoms in her, my other sister, my brother, or my father (who died in 1999 of a heart attack at age 85). My mother died at age 44 of a brain aneurysm, and all of my grandparents died in their 70's. To my knowledge, none of them had Celiac symptoms.
I have two sons, born 1968 and 1969, and three grandsons, born 1986, 1987 and 1991. None of them exhibit Celiac symptoms. I notified all of them and my siblings that they may be carriers of the gene responsible for Celiac disease, and may some day develop the symptoms I now have.
The First Days
Fortunately, I have access at work to the world wide web. Within hours of my diagnosis, I found two web links; www.celiac.com, which has links to stores in my area where I could find the things I needed; and the St. John's List Server, which gave me a daily life-line connection to people with my condition. I truly don't know how I could have coped without this mailing list subscription. Although I hardly ever post a question to the list, I always look forward to reading the daily postings, and have now begun to send direct e-mail to posters when I know something relevant about their question and feel a strong urge to reply.
The diagnosis was a huge blow to me. I was at an emotional low for several weeks, gradually coming out of it as I learned about new things I could still eat. I loved doughnuts, deep-fried fish (Lake Michigan breaded perch!), deep-fried anything, cookies, and especially cake. A 9 x 13 pan would seldom last 48 hours in our house. I also liked to stop at Harris Teeter on my way home from work and buy a package of cookies. Eliminating these things was very hard for me, but I have found almost-acceptable substitutes.
Shopping and Baking
I never was much of a baker before, but I am now. The price of Gluten-Free baked goods is beyond what I consider to be reasonable and appropriate. I also find that I have a much better choice of baked goods if I use my own recipes and make them from scratch. It's a lot more work though. I bought two of Bette Hagman's cookbooks and two of CSA's cookbooks. Along with an almost daily bombarding of recipes from my fellow Celiacs on the St. John's list server, I now have an acceptable collection of good recipes to fill the void.
I always freeze baked goods after cooling, so that they retain freshness and durability longer. When I need bread, I usually bake cookies and/or cake also, because I can overlap time, effort and energy costs. Fortunately, I can usually find a couple of hours every 10 days or so to devote to baking. I try to think of it as an enjoyable experience rather than work.
I keep the GF recipes I use in computer files, so that I can always have a clean copy even if I double or halve them or alter them slightly. These files also make sharing easier and ensure that I won't ever lose a recipe.
My wife is not Celiac, and although many of her meals are GF, some definitely are not. For example, we each make our own spaghetti, our own pizza, and our own toast (we have two toasters). We each have our own breakfast cereal and snack chips, although she sometimes eats my Corn Pops and potato chips. We always try to buy brands which we trust as GF, such as Ore-Ida hash browns and fries, Ball Park franks, Oscar Mayer bacon, Sara Lee lunch meats, and Edy's or Kroger ice cream. That way, we can be less concerned about contamination.
To help prevent contamination, and to help me remember which seldom-used ingredients are safe, I use a bold black marker to mark things GF which I know and trust to be GF. This includes my personal container of margarine, salad dressings, mayonnaise, mustard and some packaged mixes.
Doughnuts: I found a Hamilton-Beach doughnut maker (circa 1980) at a thrift shop, and found a good doughnut recipe in a book by Phyllis Potts. In about an hour, I can whip up a dozen doughnuts, complete with coconut, sprinkles and chopped-nut toppings. I freeze them until used, and take them one at a time to work, thawing and warming (yum!) on top of my computer monitor. Cake: I also make Bette Hagman's Lemon Velvet Cake fairly regularly, and although I don't eat it all in two days now, I usually have a piece every day until it is gone. I brought this cake to our Celiac support-group meeting, and one 10-year old boy ate seven pieces! Fish: I buy fresh fish, dust them in corn meal and cook with butter and garlic salt on foil on the outdoor grill. They don't taste deep-fried, but are close. Cookies: I make three different kinds of cookies and freeze them in small bags for snacks at home, to take with me on trips, or to take with my lunches at work. I also make ice cream sandwiches from a double chocolate cookie recipe, and they are nearly as good as what I remember from a few years ago. Pizza: I make homemade pizza, two at a time. I eat 1/2 and slice and freeze 1-1/2. The thin crust pizza is almost indistinguishable from regular pizza. I sometimes double the dough recipe to make a thick crust. This crust is less crisp than regular pizza, but this is not necessarily a bad thing. Even after a month in the freezer, the crust from either type still holds up OK. Coffee Cake: I received a good recipe for this from the St. Johns list server in August. It has cinnamon and brown sugar topping.
I usually buy white rice flour, potato starch and tapioca flour from an oriental store close to home. I use Hagman's ratio of 6-2-1 with these three flours to get pretty good results. The mix costs about 95 cents per pound. I also buy sweet rice flour there (for cookies) and rice noodles (for spaghetti). The prices for these products are still more than what I paid for gluten-containing equivalents at supermarkets, but about half of what I would pay for similar GF products at health food stores. The tax-deductibility feature of my health care reimbursement account helps to bring these expenses down almost to the price of gluten-containing equivalent products. I also use Masa harina (corn flour), available in the Mexican section of most supermarkets. This is a little less expensive and is a primary ingredient in pancakes and the double chocolate cookie recipe I use.
I bought a couple of Baker's Secret muffin-top pans. Each pan has six formed areas about three inches in diameter and 1/2 inch deep. These pans have a non-stick coating. I did not grease them at first, and the buns slide right out after baking if I tip the pan 45 degrees. After 2 years of use (every 10-14 days), the pans are starting to show some stains and I have to grease them. I use a very large spoon to scoop the dough into the 12 pockets of the two pans. There is usually enough left to fill 4 - 5 pockets of an antique cornbread pan, which has pockets that look like an ear of corn. I spray this pan with Pam before adding the dough to it. This particular pan has pockets deeper and longer than most others I have seen, and makes ideal buns for hot-dogs and bratwurst. After baking, I slice and freeze them all, making sandwiches at the same time for future lunches from most of them. I slice the hot dog buns vertically, rather than the traditional horizontal way. The tube steaks fit better. I found a 1/2-size version of the muffin-top pans recently, to make a better size of dinner rolls. It took several tries to find the right combination of baking time and temperature for each type of pan.
I initially used my Wel-Bilt bread maker to make bread, but have not used it since trying the 06/23/99 posting by Jane Conrad, which included an excellent recipe for buns (I double this recipe). They are easy and quick to prepare. Baking time is very critical -- experiment, and always start with a pre-heated oven and use a timer. Note - I once made the mistake of adding 50% more liquid than the recipe called for, and the result was excellent! I now always add 50% more liquid than specified in this recipe, and the buns are much less crumbly and have a better texture. I bake them at 350 for 30 minutes.
Eating Out and Traveling
I take one of my buns (already buttered), and a small Tupperware vial of Wishbone dressing with me to restaurants. It irks me that I cannot eat things which are already included in the price of my meal, but at least I don't have to sit there hungry while I watch others around me eating. I always show my Celiac Restaurant Card, which lends considerable credibility and cooperation with my request for special service. That also helps to educate servers and cooks, most of which have never heard of Celiac disease.
If I can't find anything on the menu that looks safe, I tell my server what I would like, and ask if they can prepare it. Rarely am I ever turned down. I have many times requested the "burger and fries", sans bun and with a baked potato or mashed potato substitution. The price is rarely higher.
On week-end trips, I bring rice cakes and peanut butter with me for breakfast, along with a few of my homemade buns and cookies (on ice) and a bottle of salad dressing for lunches and dinners.
When staying with relatives, I also bring rice noodles, GF pancake mix, rice puffs cereal and Quaker instant grits. I supplement my goodies from home with an occasional purchase of Archway coconut macaroons, Pamela's cookies (when I can find them), or a bag of Butterfingers or Hershey's candy.
GF Raisin Pecan bread with a little butter and maple syrup is also a tasty alternative for breakfast at relative's homes, or at motels which furnish the toppings and the microwave. I have had difficulty on two occasions at motels, and suspect portion-sized peanut butter I got there.
While traveling, I'm most comfortable eating at Denny's or Wendy's. I have never had a problem at either restaurant. I also have eaten several times at truck stops (I can count on getting a baked potato), and usually order a plain hamburger steak. At Denny's, I usually order a vegetable/cheese omelet and hashbrowns, or a plain hamburger steak with a baked potato and butter. I ask for the bun on the side (to give to Peggy), but that seems to be their normal serving policy. At Wendy's, I order some combination of baked potato with sour cream and butter, salad (Hidden Valley ranch is no longer guaranteed GF), frosty, and chili.
I have eaten at several McDonald's, ordering salad with dressing, fries, and a hamburger patty with no bun and no toppings (when I have a GF bun or bread with me). I get weird looks when I place my order. I had McTrouble only once, and that was also the only time I ever tried a Butterfinger McFlurry. I've eaten "cones" (by requesting the ice cream in a cup instead of the cone) and sundaes several times without problems.
If I can't find any GF bread while traveling away from home, I buy pure corn tortilla shells (in the refrigerator section of most supermarkets), and make roll-ups for sandwiches. Watch out for and never buy flour tortillas, and always check ingredients. I have seen corn tortillas with wheat listed on the label.
I am also developing a mixture of ingredients that can be pre-prepared and bagged at home, then mixed with milk and margarine (commonly provided at motels on their continental breakfast bar) and cooked using their microwave oven. This will give me fresh GF muffins while on the road. I've made these a couple of times at home, and they need just a little more refinement and proofing on the road. Watch this space.
Peggy and I traveled to Saint Thomas USVI (in the Caribbean) for 7 days in February, 2000. My summary of this vacation is at http://www.geocities.com/hotsprings/spa/8672/gfstt.htm.
My wife was hungry for pizza on a recent trip, and I found a very good alternative. She got take-out and we ate in our motel room. I bought some soft corn tortilla shells, Hunt's tomato sauce, shredded mozzarella cheese and Hormel pepperoni at a grocery store. At the motel, I made a pizza on a plastic plate using these ingredients, and warmed it in the motel's microwave oven for 30 seconds (until the cheese just melted). It was great! The "pizza" must be rolled up and eaten like a sandwich. I am considering making this at home in place of my usual crust pizza.
Later, on that same trip, we stopped at a motel that had Quaker instant grits at the breakfast bar. I mixed up a package with some milk in a cereal bowl and microwaved it for about three minutes total, stopping to let it cool a couple of times along the way (so that the foam bowl did not melt). It had the texture of cake, and wasn't half bad! I made another.
I recently tried packaging up bread and cookies at home using my Dazey Seal-A-Meal before taking them with me on trips. This seems to keep them fresh for a longer period of time.
Therapy
I consider baking to be therapy to some extent, and this outlook tends to make the extra work of baking much more palatable for me. It is an element of my diet that I can control. Although the foods I now bake and eat are not as good as the gluten-containing foods I used to eat, I can make whatever I want, whenever I want.
Our local Celiac support group has one or two meetings or dinners per year that I am able to attend. I look forward to them because I always learn something there, or become less apprehensive about eating out. I would prefer that this group be more active, but recognize that it takes a great deal of effort to put on the meetings and dinners, and am grateful for the ones we have.
After the first meeting, I realized that a web site for our support group would be helpful for all of us, and especially for those who become newly diagnosed in the future. I did some checking around, and discovered that Geocities would provide up to 15 MB of storage for a web page, free, with a few acceptable restrictions. A week later, I had it set up. It was available at http://www.geocities.com/HotSprings/Spa/8672 for about 2.5 years, was moved to http://www.tgfg.homepage.com in March 2000, then moved back to Geocities in March 2001.
Watching everyone around me eating biscuits and crackers while we wait for our meal to be prepared in a restaurant.
Finding only one thing on the menu I can safely order.
Feeling my stomach rumble after eating something the waitress and cook said was OK.
Watching my co-workers eat doughnuts, bagels and pizza.
Not being able to eat Lasagna at my favorite Italian restaurant, or pizza at Pizza Hut.
Having to skip most of the dishes on the salad bar.
Pot-luck dinners and cocktail parties.
Watching diners at my table eating cheesecake and cream pie.
Finding WWW.CELIAC.COM.
Finding the St. John's list server.
Finding Celiac people locally that I can communicate with.
Reading daily posts from helpful, caring people on the St. John's list server.
Finding all of the GF goodies at Wellspring Grocery.
Finding Arrowhead Mills Gluten-Free pancake mix (three days into my GF journey).
Wendy's fast food.
Receiving a copy of the TCCSSG shopping guide in the mail.
Bette Hagman's Lemon Velvet cake recipe.
GF rolls, fresh-baked out of the oven.
Learning of the GF status of Cain's pickles, and finding them that same day at Big Lots.
Attending a Celiac Support Group meeting or dinner.
Reading Jax Lowell's book.
Attending a wedding dinner where the father of the groom was Celiac!
Helping other Celiacs, and getting tips in return.
since March 24, 2000