Check out my blog at my new address:
See you there!
Check out my blog at my new address:
See you there!
I’ve been away from my computer for a couple of weeks. So much to do between Thanksgiving and Christmas. I’m sure you’re as busy as I am with all of the preparations. I’m baking up a storm.
As I mentioned in a previous post, I began to develop some of my own gluten-free recipes in 2006 while I was recuperating from my cancer surgery. My goal was to offer a taste and consistency that were close to those of baked goods made with wheat flour. After I had a few good recipes under my belt, I came up with the brilliant idea to sell my delicious products to others who were eating gluten free. I founded Kitchen Tasties, LLC and created a website for my business. I did my best to advertise it without spending a lot of money. I was featured in an article about my business in the April, 2007 issue of the free publication, Natural Awakenings – Healthy Living.
I also contacted various celiac support groups around the country to get the word out. It was a real thrill when I eventually started receiving orders. One very important fact that I learned was that gluten-free baked goods didn’t have a long shelf life. Therefore, I decided to ship my muffins, cakes and brownies frozen. I was trying to keep them fresher, longer by doing this. In addition, I put frozen ice packs in the boxes. After several months I was able to return to my full-time job and do my baking on the side. I subscribed to a trade magazine geared for the baking industry. It was there that I read about an online bakery that was looking for other bakers to join forces. I visited the website at 1-800-Bakery.com. I noticed there weren’t any gluten-free items offered. I saw an opportunity here.
I called Chef Steve and asked if I could be part of his online bakery. First I had to bake some samples for him to try. After he tasted my muffins he agreed to take me on. I closed down my own website. He did all the advertising so I didn’t have that expense anymore. All I had to do was bake and ship directly to the customer. I did that for several years. When the economy started to tank, it cost so much for me to ship my products. Also, I had to pay hefty shipping charges when I had 25 lb. bags of flour shipped to me. By this point I wasn’t making a profit so I left the online bakery. It sure was fun while it lasted.
Be sure to check out 1-800-Bakery.com. They now offer gluten-free items from other bakers, as well as, wheat flour based products. You can order for special occasions, holidays or just because you want to.
Until next time…
It’s hard to believe that Thanksgiving is this week. I feel like the year has flown by. My sister is hosting Thanksgiving and it’s custom for the guests to bring some contribution to the meal. When I asked her what I could bring, she advised that a gluten-free and dairy-free dessert was needed. I’m perfectly comfortable baking something gluten-free as I’ve done in the past. Dairy-free? Now that’s a whole different ball game. My nephew is dating a gal who must abstain from gluten and dairy.
Baking this dessert was going to be a challenge but I googled some dairy-free recipes to see what ingredients they use to replace dairy. After searching around I played with a recipe and baked it for practice yesterday. I’m happy to report that my first attempt was successful and tasty. I’ve decided to share it with you in case you also refrain from eating gluten and dairy.
Since it’s Thanksgiving, I decided I should definitely use pumpkin as an ingredient. Libby’s is my favorite.
Here is the recipe I came up with and I’m calling it Pumpkin Bundt Cake. It’s really simple to make. I just threw all the ingredients into my Kitchen Aide and let it mix away.
Preheat oven to 350.
See… I told you it’s simple to make. I’ll be baking another one on Wednesday night to bring to the feast on Thursday. I’ll definitely let you know what our gluten-free, dairy-free gal has to say.
The day I found out I had cancer I informed my family. The next day I had two important phone calls to make. The first to my hematologist/oncologist to give her the news. I didn’t leave a message for her to call me back. I waited for her to be paged and pick up my call. I explained that I had seen a new GI and that he said I had adenocarcinoma of the small intestine. I felt like my announcement knocked her off her feet. She immediately wanted to make arrangements for surgery. I told her I would be having the surgery at the hospital that the GI practices out of and not the hospital that I had been going to for all my iron intravenous treatments where she practices.
My second phone call was to the oncology surgeon that my GI doctor recommended. I set up an appointment as fast as I could get one. On a chart on the wall in his examining room he pointed to the location of my tumor. It was in the duodenal, which is the beginning section of the small intestine. It is relatively rare compared to gastric cancer and colorectal cancer. He explained how he would cut the tumor out and do a resection of my intestine. He was the best in his field at this hospital so I felt I was in good hands. My GI and hematologist/oncologist were in touch before my surgery so everyone was on the same page.
On March 29, 2006 the surgeon removed a foot and a half of my small intestine. He also removed 12 lymph nodes for biopsy. We were all hoping the cancer hadn’t metastasized (spread). When I woke up in the recovery room I was in excruciating pain but I was alive. I was crying and telling my husband and the nurses the amount of pain I was in. They said they couldn’t give me anything until more of the anesthesia had worn off. My mother and sister had also been waiting with my husband so the surgeon met with all three of them afterwards to tell them the surgery went well.
The next day my GI doctor paid me a visit to see how I was doing and to tell me that all 12 lymph nodes were clear. The cancer had not metastasized. That was great news! I asked him if he just stumbled upon the tumor when he did his endoscopy. He firmly replied, “No. I knew exactly what to look for.” Thank God I had switched doctors when I did or I wouldn’t be here sharing this with all of you right now. My last GI did a colonoscopy and endoscopy the previous December and couldn’t find it.
When I was released from the hospital a week later I had a big basket of Mrs. Fields’ cookies and brownies sent to my GI’s office for him and his staff to enjoy. I was so grateful! I met with the surgeon after two weeks so he could take a look at the incision site. It was fine. He told me it was a slow growing cancer and I was very lucky it hadn’t spread. He suggested I get chemotherapy just to be sure. He sent me on my way and told me to gain weight. Of course, I contacted my hematologist/oncologist after the surgery and gave her the news. From now on I’ll just refer to her as my oncologist. I set up an appointment with her soon after. We agreed I would have the chemo treatments at her hospital so she could monitor me along the way. I scheduled an appointment to have a Porte catheter surgically put in my chest in which to receive my chemo treatments.
In the meantime, my oncologist placed a phone call to a doctor she knew at Memorial Sloane Kettering for a second opinion. After that doctor discussed my case with other doctors on a panel, it was decided that I didn’t need chemo. 1) The fact that the cancer hadn’t spread. 2) The fact I was so sick with my body starting to shut down prior to my surgery, played a big part in that decision. They didn’t think my body being in the condition it was in would handle chemo very well. The Porte catheter didn’t go to waste though. I needed more iron intravenous treatments to get my iron levels up to where they should be. So… they did the treatments through my port. That gave the veins in my arms a rest because they had pretty much collapsed as a result of all my previous treatments. Before my surgery, the nurses couldn’t find a good vein to use anymore and had to start using veins in my hands. I hated that because it really hurt!!!
Like I’ve said before, I don’t want to throw a lot of medical jargon at you. I’m telling you in the simplest of terms that we all understand. It’s important to find a GI doctor who knows what he is looking for when presented with the symptoms. If you aren’t happy with his findings, move on to someone else. It could be a matter of life and death.
So after spending a week in the hospital in December of 2005 and receiving a 6-pint blood transfusion, I wasn’t really feeling as well as I expected to feel in January of 2006. I mentioned some of my stomach issues to a coworker. She recommended her son’s GI doctor. She also said this doctor studied celiac disease for a hobby. I couldn’t wait to meet him. I set up an appointment right away. When I met with him in his office he told me he had once worked with Dr. Peter Green. I mentioned in a previous blog that I went to see Dr. Green at Columbia University in New York. I knew then that I’d come to the right place.
Things moved quickly once this GI was in the picture. He instructed me to have a lower and upper GI series. That is where you drink the barium drink and the technicians take x-rays of your body as the fluid is traveling through your system. If you’ve ever had to drink it you know exactly what I’m talking about. It is the grossest drink ever!!! The x-rays showed I had a blockage. It took hours for the barium to pass through me. I spent the whole day at the hospital. Following that, this GI performed an endoscopy. Unlike the first one I had many years ago, this one was done in a surgical center and I was given anesthesia. I didn’t feel a thing. My GI went down into my small intestines with a scope and took a biopsy.
On March 17, 2006 at a follow-up visit regarding the endoscopy results, my GI informed me that I had cancer: adenocarcinoma of the small intestine he called it. This is a rare form of cancer caused by untreated celiac disease for most of my life. The tumor was the size of a golf ball and was attached to my small intestine. I was bleeding internally, which was causing the loss of iron. Finally we had the answer to my severe anemia and why the iron intravenous wasn’t working. I asked him if he had treated other patients with this same cancer and what their outcome was. Since beginning his practice, he had only seen two other patients with celiac disease and this type of cancer. Neither of them survived. My outlook was bleak. I just sat there. Numb. He told me he couldn’t believe I was taking the news so well. He thought I would be crying hysterically. I told him that I’d been through so much crap that this was just one more stumbling block in the road of my life. I asked him what we were going to do about the cancer and we discussed it a bit further.
I left there in a state of shock. I drove home on what seemed like auto pilot. All I remember is the first song that played when I turned the radio on. It was Bad Day by Daniel Powter. How ironic right? Yes, it was a bad day but then again, I’d had a lot of bad days since 2003. Maybe this surgery would finally rid me of all my stomach issues. If I survived.
I arrived home and my husband was at the stove making dinner. He was mashing potatoes when I walked in. I stood in the doorway and simply said, “I have cancer.” I don’t remember his reply but I proceeded to tell him everything my doctor said. He went back to mashing the potatoes while I called my mother to give her the news. When I told her I had cancer, she said, “You’re kidding.” I said, “No… why would I kid about something like that?” I repeated to her everything the doctor said. Next I called each of my kids at college. I told them I would be having surgery on my small intestine to remove a blockage that was causing my vomiting issues, but I never mentioned the word cancer. I just couldn’t say that word to them. I didn’t want to scare them. I did my best to put on a happy face even as I was getting my living will and my last will and testament in order.
I’d like to give you a word of advice. No matter how old you are, write a will. I know it’s something that younger people don’t even want to think about but it’s so important. It’s a good idea to do it when you’re in good health and don’t have a serious illness looming over your head. Find yourself a good attorney and have them guide you through it. Luckily, my husband and I prepared our wills several years prior so I basically just updated everything and told my family where to find it if I didn’t survive.
In December of 2005, I went to the hematologist for my routine blood test. I told her how awful I was feeling. There were times I was so cold my teeth would chatter. I constantly heard a pounding in my ears or what sounded like a swarm of locusts. I walked my dogs in the backyard when I got home from work each day and I could barely stand up without holding onto the fence or a tree. She told me exactly why I was feeling so poorly. Remember I mentioned in a previous blog that the hemoglobin count doctors like to see is 12. Well… mine was now down to 3. She told me that a couple more days and my heart and kidneys would have failed. She admitted me to the hospital that very minute. My son, who had driven me to my appointment, was in the waiting room. She asked one of the office staff to bring him to her office and told him I was being admitted. I insisted on going home to pack a bag first but my doctor wouldn’t hear of it because of the seriousness of my condition.
The next thing I knew I was lying in a hospital bed and receiving a 6-pint blood transfusion. That’s more than half the blood in your body. This may sound stupid but I wondered if they would have to drain 6 pints of blood out of me before putting the new blood into me. The answer was no. The new blood would just be absorbed into my body. By the next morning I was sitting up in bed and feeling much, much better. Receiving 6 pints of iron rich blood did the trick. I was anxious to go home. I had a big smile on my face when my hematologist came in to check on me. I told her I was feeling good and ready to go home. She told me I would be staying the week so I could rest and undergo some testing. WHAT? It was the week between Christmas and New Year’s. I was hosting a New Year’s Eve party at my house. My hematologist wanted my GI doctor to perform an endoscopy and a colonoscopy to see if he could find anything. I had lost so much iron. It had to be going somewhere. However, his tests showed nothing. I was released at the end of the week and hosted my party after all. Happy New Year!
I don’t know if I mentioned that I love to do Sodoku puzzles. Actually, my son started doing them years ago and got me hooked. I found his book of puzzles recently and did a few.
I saw him a couple of weeks ago and handed him his Sodoku book back. He wouldn’t take it and told me I could keep it. I asked him why and he said because he was working on puzzle #24 in the waiting room the day he drove me to the hospital and was summoned into my doctor’s office. He never finished that puzzle. I flipped to it and sure enough it’s only half finished. He never wants to see that book again because it brings back bad memories. I’m so happy I’m alive and able to do Sodoku puzzles. I try to do one a couple of times a week and will do so until the book is finished.
Then I guess I’ll throw the book away, but not before I rip out the page with puzzle #24 on it. That… I just may save.
Until next time…
So last Sunday I was hungry for a snack. A sweet snack. I opened the pantry door and rummaged around inside, searching for something to satisfy my craving. Then I spotted the box of Bisquick. They have a gluten-free version now in case you didn’t know. I could make biscuits.
But that wouldn’t satisfy the sweetness I was looking for. Strawberry shortcake would do the trick. But alas, no strawberries. When my daughter heard the disappointment in my voice, she suggested that I use a bag of frozen mixed berries that was taking up space in the freezer instead. Great idea! I baked the biscuits according to the recipe right on the back of the box. The recipe said it would make 10 biscuits. I decided to make them bigger and make only 9 biscuits. If I was going to make a sweet treat, I wanted more than a mouthful.
After 15 minutes they were done. I took them out of the oven and let them cool. Every time I bake something, I always want to taste it first before I serve it to anyone else. So…. when they cooled I tried one. Delicious! The wonderful aroma wafted down the hall which brought my daughter to the kitchen asking if she could try one. “Sure, go ahead,” I said. Noticing that I needed to start getting dinner prepared I decided we would have our mixed berry shortcake for dessert.
After dinner my daughter began to render down the frozen berries on the stovetop and added some sugar.
I set about whipping the cream.
Once finished, I sliced up some biscuits, put the fruit mixture on top, added some whipped cream and topped it off with more of the hot fruit mixture. It was heavenly!!! My husband came in search of his before I even called him.
I find myself doing this a lot lately. If I want a snack I end up baking something. I do more baking now than I’ve ever done. Have I mentioned that I’ve put on some poundage since I began my gluten-free baking adventure? Some people are under the impression that if you are eating gluten free you will lose weight. Well that hasn’t happened to me. I love to bake and I love to eat it. Remember I mentioned that I lost a lot of weight due to the fact that I couldn’t keep food down for a year. After my first cancer surgery, my surgeon’s advice to me was GO HOME AND GAIN SOME WEIGHT. Well I heeded his words and did gain some but perhaps a little too much. Now my doctors are telling me the opposite, suggesting that I lose at least 10 pounds. That’s going to be mighty hard to do unless I give up baking.
Unitl next time…
Yes… I’ll be the first to admit it. My health was deteriorating slowly beginning in 2003. Well, that’s when I first noticed it.
In 2005 I was vomiting practically every day. I was so tired and weak I don’t know how I was able to hold down a full-time job. I’d throw up in the bathroom at work. No one knew it though. More times than I’d care to remember, I would pull my car over to the side of the road on my way to work or home and throw up. In the fall of 2005 my twins headed off to separate colleges. I was barely able to help them on each of their move in days. I couldn’t carry much because I didn’t have the strength. Making the trek from the car, across the campus, and up the stairs to their rooms was impossible for me to do. I had to keep stopping to take a rest. I was more of a hindrance than anything else. Finally, I sat in the dorm room and watched everyone else move stuff in. Here they were, my daughter in August and my son in September, so nervous about moving off to a different state, making new friends, and doing well in their studies. I didn’t want them to have to worry about me.
In my mind I kept thinking that my family and friends didn’t know how sick I was. On the phone one night with my mother I told her that maybe I did have cancer and the doctors weren’t telling me. I realize that was a silly notion. Of course they would tell me. If they knew.
Due to the constant vomiting, I lost 40 pounds. A woman I worked with asked me what my secret was for losing so much weight because she wanted to do it too. She had to be kidding. My clothes were just hanging off of me. I felt like hell and was desperately trying to keep food down. I decided to just eat soft things like, jello, pudding, soup, and scrambled eggs. Well, that didn’t help. I threw that up too. And most of it contained gluten.
As I mentioned in a previous post, my hematologist ordered 8-week iron intravenous treatments for me several times during the year due to my severe anemia. One particular evening I had finished my eighth week of treatments but I wasn’t feeling any boost of energy at all from this last round. I was barely able to drive myself home. I would close my eyes at red lights to rest because I was always so, so tired. When I arrived home I literally crawled in to the living room and lay there. My husband was already home from work and preparing dinner in the kitchen. I announced from the floor that I was home. He looked down at me and asked if I was all right. No… I’m not kidding you. He really asked me that. You see – when people view you as a strong person they assume you never need help. I’ve been through some tough times in my life and managed to survive it all somehow. So, I picked myself up off the floor, told him how tired I was and plopped down in a kitchen chair. I really didn’t even want to eat because I already knew within half an hour I’d be throwing it all back up.
When my kids came home from college for Thanksgiving break, I could tell by the looks on their faces when they saw me that I looked really bad. I was physically and emotionally drained. I’d like to end this post today on a happy note but I can’t. Things got much, much worse.
Until next time…
If you’re in the celiac world maybe you’ve heard of Dr. Peter Green, the Director of the Celiac Disease Center at Columbia University in New York. I can’t even remember who it was that suggested I go to see Dr. Green. It was so long ago. I took their advice and set up an appointment with him. On a beautiful autumn day, just like today, in October of 2004 with my husband driving, we made the trek into New York with my mom along for the ride.
Dr. Green looked at the x-rays of my pelvis and abdomen that I was asked to bring along. He didn’t see anything that would indicate a reason for concern. He re-enforced the need for me to strictly adhere to the gluten-free diet. He set up an appointment for me to return the following week to meet with the nutritionist. Of course this meant that my husband and I had to both take off another day from our jobs. I love to drive but driving in New York is a little unnerving for me.
So… the following week I met with the nutritionist. I found her to be very helpful. She gave me a booklet that reinforced the foods I could eat, as well as foods and ingredients to avoid. However, here at the Celiac Disease Center, I felt that they put a more positive spin on the foods that I could safely eat. One section of the booklet was termed Survival Guide. It was here I discovered I could eat ice cream again. On a previous visit to a nutritionist near home, I was told no more ice cream but to have frozen yogurt instead. I learned to like frozen yogurt but flavor choices were limited. The ability to eat ice cream again was exciting news. I left there that day feeling a bit uplifted about the gluten-free diet. I read excerpts from the booklet aloud to my husband on our drive home. Believe me… I wasn’t jumping for joy after reading this booklet. It was extremely difficult for me to steer clear of so many things I had been eating and loved for years.
There was also a Gluten-Free Shopping Guide section in the booklet that concentrated on essentials for a gluten-free kitchen. It told the reader to purchase such things as a new cutting board and colander, for example, in order to avoid cross contamination. It actually said to take my time and browse in food stores, read labels, and have fun!
Another section of the booklet concentrated on hidden sources of gluten such as in soy sauce, processed cheeses, prepared cake frosting to name a few. I would never have guessed that gluten could be found in so many food products other than baked goods, cookies and pasta. Reading labels was a very important task for me now. One of the buzz words to look for is modified food starch. This could mean it may be derived from wheat. If it says modified corn starch it would be ok because then it was derived from corn and corn is safe for consumption by someone with celiac. Soups and gravies were off limits because they may contain wheat starch as a thickener.
Dr. Green wrote the book “Celiac Disease – A Hidden Epidemic” which I later purchased. It’s packed with all kinds of information regarding symptoms, diagnosis and associated illnesses.
Isn’t if frustrating when you try to tell someone something and they just don’t believe you? Well… it happened to me all the time before I was diagnosed with celiac disease. Then it happened again when I had cancer. Doctors couldn’t find it and kept blowing off the fact that I felt sicker than usual.
Out of the blue In March of 2003, I began to feel sick to my stomach quite often. My general practitioner and the gastroenterologist he sent me to both insisted it was because I was not following my gluten-free diet regularly but I knew this pain and discomfort was something else. I was sure of it. I had a hard time convincing either one of them of that. Occasionally, I started vomiting after eating a meal. Neither doctor seemed concerned but I was concerned.
My doctor ordered some blood work and the results showed I was anemic. And yes… I was chewing ice again. He prescribed iron supplements for me but several months later when follow-up blood work indicated I was still anemic, he gave me the name of a hematologist/oncologist to see at a hospital that was over 30 miles away. She was great and to this day I love having her as a member of my medical team. She put me on iron intravenous for 8 weeks to bring my hemoglobin and other blood counts up. Wow… I never saw that coming. Since oral iron supplements weren’t working she needed to intensify the dose by putting it straight into my veins. Now I have no intention of using medical lingo on you but quite simply I can tell you that the average hemoglobin number is 12. Doctors are happy if you are at that number or higher. I was hovering between 7 and 8.
I hate to say it but it was a bit of an inconvenience to travel 72 miles round trip to the hospital and back once a week to have my veins poked and prodded in order to set up the intravenous treatment. I had to arrive at work late or leave my job early to get to the hospital. I received my intravenous in the chemotherapy treatment room. In the beginning I was a bit uncomfortable in there. Looking around at all the people sitting in chairs receiving their chemo was depressing. Some wore hats, others wigs, and others simply didn’t care to cover their bald heads. Some of their treatments took up to eight hours. Most had a family member or friend with them so they didn’t have to be alone. Other patients that were in really bad shape lay in beds to receive their treatments. Seeing all this humbled me. Who was I to complain about the trip back and forth to the hospital? My iron treatment lasted about 30 to 45 minutes and then I was done.
By the eighth week of treatment I felt like I had a little more energy and my hemoglobin was at 12. My hematologist asked that I come back in 3 months for follow-up blood work. In August of 2004 my hemoglobin was at 8 once again. She was determined to find the reason for my continuous loss of iron. I loved her for that. She suggested we do a bone marrow test. I can honestly say that was one of the most painful experiences of my life. I cried through the entire procedure. I didn’t love her then. She told me my bones were so soft she had to go deeper than she planned on. They were soft due to a lack of calcium. I didn’t receive anesthesia for this procedure and it seemed to go on forever as she plunged some sharp instrument hard into one of the bones in my lower back/hip area. The nurse who was in the room with us grabbed my hand and I held on to her tight. She kept assuring me it would be over soon.
The biopsy came back negative for bone cancer. I was certainly glad to hear that news. However, I was very depressed we still didn’t know what was wrong with me. I was at the lowest place in my life that I had ever been. I felt like I was just existing and often times I didn’t even feel like getting out of bed in the morning. I felt bad that my kids had to see me like this. I consider myself to be a strong person and I’ve been told by others that I’m a strong person so somehow I just pressed on. My parents were strong people too in tough times so I guess it’s in our genes. I still continued to hold down a job, take care of my family and the household. I was determined not to let this get me down. Whatever it was.