DOWNEAST CELIACS™

By: Kathe Hughes, California Celiac

Mike asked me to write an article about living the gluten-free lifestyle in California. I want to thank him for the opportunity to share with all of you.

I am a native Californian, diagnosed with Celiac 24 years ago. Contrary to sometimes believed stereotypes, we do not have a hot tub, although we used to. We have never had a pool, although we have always had neighbors with pools. We do not spend our days at the beach, although we did in our youth. I’ve heard about California Cuisine, but to me it’s just the food we eat. We do wear sunglasses, a lot. I really was born in Hollywood, CA.

California is a very large and varied state. We have mountains, beaches, large cities, small towns and desert. I grew up in Los Angeles and now live in the small town of Cameron Park, about 150 miles east of San Francisco and about 100 miles west of Lake Tahoe. California is mostly a desert state to which we have added water. No water – no California. Lately it has been very dry, and this past month we have been plagued by many fires. Cameron Park has been smoky and unpleasant, but not in danger of burning down.

I feel very fortunate to be living with Celiac. When I was diagnosed 24 years ago, no one that I knew had ever heard of Celiac, Sprue, or gluten-intolerance. I was hospitalized at 84 pounds with blood pressure that was dropping like a rock. I’d been sick for about six months and had seen several doctors. Fortunately a very astute Internist referred me to a very good Gastroenterologist. He diagnosed me with in a few days of my hospitalization. Gluten-free or die? I said, no problem, I’ll be gluten-free.

There were, in 1984, almost no gluten-free products on the market in California, and in fact across the U.S.A. Celiac was thought to be a rare disease affecting one in approximately 4000 people in the U.S.A. I ate rice cakes, peanut butter, corn tortillas, plain meats, fruits, veggies, rice and potatoes. I read lots of ingredients lists and did my best to choose food items that were gluten-free. I gained weight and became healthy again.

Within about a year I connected up with a newly formed support group in Sacramento and began a life-long friendship with Diane, the local Celiac/Sprue Association support group leader. One of our first discoveries was that two of the mills providing rice flour to the region were grinding rice flour without thoroughly cleaning the mills. Yikes! Cross-contamination! These issues were addressed. One mill immediately stepped up to the plate and changed their processes. The other mill we continue to avoid. Diane even ground her own rice flour for her family for a time. I searched for other sources and finally found Ener-g foods. The local support group, Chapter 24 of the Celiac/Sprue Association met at my house for many years. We have provided and continue to provide support to hundreds of newly diagnosed Celiac’s and on-going support for all Celiac’s and those who must eat gluten-free.

Our local support group has expanded over the years. We now have three auxiliary groups, Cel-Kids, a children’s group; a Davis, California group; and my El Dorado County group. The Sacramento group has a mailing list of over 300 people. The El Dorado County mailing list has 65 names. More and more Celiac’s in our region are being diagnosed. We work to educate doctors, restaurants, dentists, and many other autoimmune support groups who will benefit from the gluten-free lifestyles. We are also fortunate to have a Celiac clinic at Stanford University. Several of our support group members have been diagnosed at this clinic and continue to be seen by their doctors.

My family has always been supportive of my gluten-free lifestyle. Family celebration dinners are no problem. I cook most of them. One of my daughter-in-law’s picks up the other celebrations. My other daughter-in-law has some severe medical issues, but always makes sure she brings gluten-free munchies, guacamole, etc. to our events. My oldest granddaughter makes excellent guacamole.

My oldest son now eats gluten-free, although he has not been officially diagnosed with Celiac. My youngest son has tested negative for Celiac, but continues to have digestive issues. I hope to talk him into additional testing at some point. Two of my grandchildren have tested positive for Celiac, and do not follow a gluten-free diet. My other two grandchildren have not been tested, but seem to be healthy and growing well. I’d like for them to be tested also. My husband decided to eat 100% gluten-free a few years ago and has felt much better ever since. He has had digestive and esophageal issues for all 46 years I’ve know him. One of my cousins identifies herself as Celiac. Her doctors do not argue although she has not been officially diagnosed. Several other cousins have related autoimmune issues, but up until now have not been tested for Celiac.

Friends are supportive although not always knowledgeable about gluten-free issues. I do notice that before I was diagnosed with Celiac we had lots of dinner invitations. Now we only have a few friends who are willing to go to the extra effort of cooking gluten-free. A recent bonus has been the addition of gluten-free communion at our Church. There are six Church members who are gluten-free. This gesture has been wonderfully supportive.

I had one acquaintance who, when I told her I had Celiac said, "I always knew you were a little silly." I did say acquaintance didn’t I? I did say had didn’t I?

My husband and I eat out frequently and travel a lot. We’ve traversed the U.S. five times by car in recent years. We’ve cruised to Mexico and Alaska and taken the VIA across Canada twice. We’ve also traveled in British Columbia and Vancouver Island and the Gulf Islands. Canada is the easiest place to be gluten-free. We have even found selections of gluten-free products in the small market on remote Quadra Island. Gluten-free products? Well sure, just look in the freezer in the back. WOW!

I also cook and bake all the time. My home made gluten-free French bread and chocolate cake are famous throughout the local Celiac community and among my grandchildren. My grandsons love my French bread and get angry if I bake anything but chocolate cake for birthday celebrations. Life as a Celiac is so much easier when you know how to cook. In my opinion, the key to cooking gluten-free is the willingness to experiment and fail. Fortunately, my husband is willing to eat almost all my failures. It must be love.

Gluten-free products are now much more readily available in the United States. Some communities and cities are better than others. Springfield, Illinois – NOTHING. Evansville, Indiana – Adele’s has shelf after shelf of gluten-free items. Des Moines, Iowa also has a health food store with two freezers full of gluten-free products. These are just a few of the cities that come to mind.

In my local area it is now relatively easy to find gluten-free items on the shelf in the Raley’s and Bel-Air markets. Nugget and Whole foods markets also have lots of gluten-free items. Costco also has some gluten-free marked items. The other local markets have a few items, if you hunt, but are not really worth shopping in for our needs. We also have Elliotts Health Food stores and some Natural Food Co-Ops. Kinnikinnick products continue to be my favorite, but Ener-g has great sesame pretzels and flours, Glutino is well liked by many local Celiac’s, and we also have a wonderful bakery here in Cameron Park, Azna Gluten-Free/Vegan Bakery. The new U.S. labeling laws requiring wheat or any wheat derivative to be listed on the label has been extremely helpful to all us Celiac’s.

We also have many local restaurants that provide gluten-free menus. Some of us have had great experiences at these restaurants. Others have been ill for several days following eating at these establishments. It seems to be related to what chef is cooking that day, and how well they have been trained in cooking gluten-free. Waite staff understanding is also key to a successful gluten-free meal.

My husband and I tend to keep things simple when we eat out. We stick to salads and plain meats and vegetables. We keep a supply of CSA Restaurant cards in our pockets and hand them out freely. Many Waite staff now recognize us on sight and say, "Oh, I remember you! No bread, right!" We continue to educate.

In conclusion, I’m wondering if living gluten-free in California is so very different from living gluten-free anywhere in the U.S., or in fact anywhere on the North American Continent. Please provide me with your comments and feedback. You may reach me kathehughes@sbcglobal.net.

Celiac, The disease of choice!

By Joanne Butland

My road to diagnoses was shorter than most, it only took 8 months from the start of the disease to my diagnoses.  The disease I have been told was triggered by my illness because I was genetically predisposed.  After my surgery, I didn’t feel like my old self and began to loose weight.  I was luckier than most as my Mother had been celiac for years so I asked to be tested.  The tests were inclusive but warranted a biopsy, which was also inclusive.  My Gastroenterologist suggested a second biopsy in a couple of months or I could try the diet.  He advised me the diet was hard to follow and would be a life time commitment.  By this time, I felt so bad and knowing what the diet entailed because of my Mom I chose the diet.   That was February of 2007 and I have been Gluten free ever since.  No more Mickey D’s or Tim’s for me.  That was hard to take for the first few weeks!  In hind sight it wasn’t such a bad thing!

I, like most people, never read a label, and had no idea what I was feeding my body.  The first time I went grocery shopping the gluten free way it took me 2 hours to buy $50 worth.  I learned my eye sight wasn’t what it used to be, or they were making the print smaller, and I defiantly needed help!  I joined the Celiac Association and began reading and researching everything I could find on nutrition and celiac. With the help of the Moncton Chapter, my family and friends I now eat better than I have most of my adult life.   My tastes have changed for the better.  Who would have thought I would ever prefer a spinach salad to a Big Mac?

I am lucky to have developed celiac in 2007 and not 20 years ago when there wasn’t the selection of food we have today.  Travel is simple because most restaurants are aware of the disease due to the hard work of Celiacs across the country.   I don’t dine out as often as I used too, but when I do I enjoy the experience much more because it is such a treat! When I road trip I pack my cooler and stop along the way for a picnic.  I never made time for a picnic before I became a celiac, and I do so enjoy them.   I am now able to cook for my Mother without worrying about making her sick by mistake, and the best part is she can return the favor without making herself sick.

Being a celiac has given me permission to take time for myself without feeling guilty.  I can now pick up my groceries in 15min flat as I don’t browse those can’t have isles anymore.  I carry my reading glasses and always check labels, when in doubt I leave it alone.   I haven’t quite covered all the chocolate bar labels yet, but I will!  If asked to choose a disease I had to have celiac would be on the top of that list, as all the good things about life, truly are gluten free!    

Doctors Said: I Was Failing To Thrive

By: JoAnne Wilson, VP of the CCA Moncton Chapter

I was born in Toronto, Ontario in 1955 and weighed about 2 ½ lbs. The doctors told my parents that I was failing to thrive. They put me on special formula and later when I had gained some weight sent me home. Growing up I was always the smallest child in the class. I did not mind too much when I was younger but as I became a teenager and the guys thought that I was the ‘kid sister’ in the group it was frustrating. I have had problems ever since I can remember. Up until 19 years of age I suffered terribly with severe constipation. I would be in such agony that I would pass out. At one point the doctors even wanted to operate to ‘correct’ the problem. At 19 this changed and I began to have painful bouts of stomach cramps and diarrhea. Later I went to a specialist in Toronto and he put me through a battery of tests, but did not give me the scope. He said that I had ‘spastic colon.’ It was something that I just had to live with, nothing serious.

In 1992, while I was working at the bank I thought that I had a bad case of the flu. My symptoms were worse than usual. I went on the ‘BRAT’ (bananas, rice, applesauce, toast) diet. This didn’t seem to help and for over a month I was living on Jell-O and Mr. Noodles. I was dehydrated and losing weight. I would look at myself in a full-length mirror and I was frightened by the image I saw. It had gotten to a point where it was very hard to concentrate. At my lowest point a customer came in with about 5 or 6 transactions and I just froze. I could not think of how to deal with any of them. My supervisor noticed what was happening and she and another employee came up to me. I was taken to the hospital where I was given an I.V., for severe dehydration. After that experience I called my doctor and told her that this ‘flu’ had really been holding on to me and that I still could not keep anything down. She sent me right away to see a Dr. Schweiger. He took one look at me and said that he thought he knew what was wrong with me but still had to perform a biopsy to be sure. My short stature, plus the fact that I have a bone disease (osteochondromatosis) were clues to what my problem was.

The biopsy confirmed I had Celiac Disease and Irritable Bowel. He told my husband that because my body was shutting down I probably would not be living much longer. He referred me to Janet Colpitts to help me with the Gluten-Free diet. Up until then I had never heard of Celiac Disease and was terrified. As I received more information about it through the dietician and receiving baking lessons from Judy Burgess, I felt better about my situation. I joined the Moncton Celiac Chapter and I immediately plunged into volunteering with the group. I began with working on the telephone committee, later doing a stint as treasurer. I was the Newsletter Editor for many years as well.

I have had the opportunity to be Vice-President for the last few years and have really enjoyed it. I also had the privilege of being on the Steering Committee, planning the 2007 Celiac Conference, which was held, in Moncton; what a fantastic experience!

Also, I am looking forward to attending the National Celiac Conference in Victoria, B.C. this coming May.

 I believe it is important to be a member of the Moncton Celiac Chapter. I also believe, by volunteering in our chapter I have gained more understanding of this disease.

As a Celiac member my hope is that our meetings will be filled with new helpful information and as always, good food to share by all.

Jo-Anne Wilson, Vice President, Moncton Chapter CCA

CELIAC FOR 27 YEARS

BY: Doris Richard

     I’ve been a celiac for 27 years and doing very well. Like everyone else I suppose before that I was either constipated or had diarrhea and no one could find out why. I sure kept skinny though; I could eat day and night and never gained weight.

     I was pregnant with twins and weighed less that 130 lbs. I had so many tests done trying to find out why I had cramps and got so bloated I felt like the blimp. But all the tests came back normal. After a while you think it’s normal to feel this way and people don’t understand why you always complain of cramps etc.

     In 1984 after I ate if I didn’t lie down for a while I would vomit. Finally after 9 months of testing I was told I was lactose intolerant. Everything went well for 6 months then I got sick again. I called the doctor and was told not to eat flour, I was a celiac. I lived in Massachusetts at the time.

      I ate no flour for nine years, never cheated. In 1993, I couldn’t keep any food in and went from 115 lbs to 82 lbs. I almost died. My gastroenterologist didn’t know anymore about celiac than I did. He kept saying eat more pasta and more bread, you’re not getting enough proteins or vitamins. After 4 days in hospital he said you’re a very sick person but I have no idea what’s wrong. I was tested for celiac and tested negative because I didn’t eat enough wheat. He sent me to Boston because my husband was ready to beat him up. ha!

     I went to Brigham and Women’s Hospital and saw a doctor there. He took one look at me and said I know you’re celiac. He had me eat wheat for 2 weeks and got tested again. Of course I tested positive. I joined a support group in New Jersey (we had none around home) and bought Bette Hagman’s cook book.

     I moved to New Brunswick in 1997 and joined the support group. What a godsend. We have a newsletter every few months with so much information, we have pot luck lunches 4 or 5 times a year, where we get to try new dishes different people make. The support group is great because you always have someone who can answer your questions. I do peer counseling. I wish we would have had them when I was diagnosed. It’s pretty scary when you don’t know where to shop or if you’ll ever eat something good again. I love seeing people’s reaction when I counsel them and serve them a piece of pie or some bread and they realize it’s good.

     It’s not so bad when you know you’ll be able to eat well. Volunteering is good because you always get lots of info and make new friends. Think about volunteering if you can. It takes a lot of people to run a support group, people to run the committees, calling people, put together a great newsletter,  make and sell fudge twice a year, participate in the walkathon, set up for lunches. Think about it

     And remember don’t cheat, we’re lucky our diet is our medication.  See you in February,

Sincerely, 

 Doris Richard,  Moncton CCA Member.

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“A Gift in Disguise”

On a fall day, in the year 1996, I was trying to nap after a long jog and a hard work out at the gym. I was thinking of how a work out such as what I had just completed was supposed to make me feel more energetic; in my case however, it seemed to have zapped my energy. I spoke with my doctor about how I was feeling and he referred me to a specialist. He mentioned that I may possibly of leukemia. Thankfully, that did not prove to be the case. Instead, I was diagnosed with anemia at that point in time. In Sept of 1999, I was thrilled to accept a job offer with school district 2. My excitement quickly began to bring me a sense of uncertainty and worry as I started to wonder how I could possibly have the energy to carry out my work duties and obligations for the next 25 years. At this point in time, I was unable to fathom how I could even survive an eight hour work day. I was often so overwhelmed with feelings of tiredness that all I could do was simply cry. This is how I felt most of the following four years. While I was experiencing anemia, my mother was drastically losing weight. She went from a healthy 135 pounds to a devastating 89 pounds. She was experiencing the most typical symptoms associated with Celiac’s disease. In January of 2003, my mother was diagnosed with Celiac’s disease. Since my mother was so frail, I knew that I had to take charge for her. I remember phoning Judy Burgess to learn everything I could about this disease. Judy was a “life saver” in giving my mom the literature, support and very tasty goodies to help my mother until we were ready to embark on this journey ourselves.

Since I didn’t want my mother to have to start this path on her own, my sister and I took it upon ourselves to clean and organize her whole kitchen with the intent of restocking it with gluten free food. While in the process of setting up her kitchen, the reality of this disease began to set in for me. Many days after she was diagnosed, my mom and I did a lot of reading to learn as much as we could about this disease. The more I read, the more I began to feel that I probably have this disease as well; it certainly offered an explanation for how I’ve been feeling. In the spring of 2003, my blood work tested positive for Celiac’s disease, and on June 30^th 2003, the scope confirmed that I in fact have this disease.

I remember my mother feeling very guilty about possibly transferring this disease on to me. I tried reassuring her that this was good, because, I can now begin to feel better. Although this diagnosis was a relief for our family, we were also aware of the seriousness of being undiagnosed for many years, and how that can play havoc on one’s immune system. Looking back at my mom’s childhood, her two sisters remember my mother being very sickly even as a child. Unfortunately, 65 years of being undiagnosed resulted in a weakened immune system in my mother, and was later diagnosed with lung cancer. My mother sadly passed away on July 5, 2004.

The second scope I underwent was to determine if there has been an improvement in my condition since I have been on a gluten free diet. Unfortunately, this resulted in me being diagnosed with barretts’s esophagus with dysplasia. Had it not been for my mother’s unfortunate illness, I would not have known that I have this very serious upper digestive disorder that could have resulted in esophageal cancer if undetected. Today, I am full of gratitude for so many things: I am thankful for Rosie and her daughter who have been dear to me and have been feeding me so well, they are both “real angels”, and for Mike Murphy’s enthusiasm, for the staff at Rosie’s and for the members at our association who make me feel like a part of the family, but  I am most thankful for having had an incredible mother, who always took care of me in life, and now, continues to do so in spirit!

In loving memory of my dear mom, June Saulnier.

Nicole Gauvin

LIVING WITH CELIAC DISEASE

By Cécile Robichaud

             Mike Murphy asked me if I could write my story as a celiac for this newsletter.  I thought about writing about when and how I was diagnosed (1991), but I thought I would put a different spin on my story and talk about how it is to “LIVE” with celiac disease.

             I am writing this for those of you who are newly diagnosed and for those who have been diagnosed  for quite some time and have  yet to come to terms with it.    My message is only meant to make you reflect on the wealth of your life.  By that, I do not mean how much money you have in the bank account or the tally of all your worldly possessions, but the riches that money cannot buy like family, friends, love and laughter.  Millions of people would trade places with you if they could;  those dying with cancer or other fatal diseases,  those hooked up to a dialysis machine three times a week,  those in chronic pain,  those who are in wheelchairs,  those who cannot see a sunset, those who cannot hear a symphony, those who cannot speak words of love.  Of course, there are also those in nursing homes, depleted of their memory and sometimes left with no family left to visit them.   And what about those with mental illnesses who are unable to function and often shunned by their families and society?  And then there are those who live in countries where war, oppression, prejudice and hunger are a constant in their lives.  Each and every one of these people would trade places with you in a heartbeat and exchange their plight with you in exchange with living with celiac disease.

            Celiac disease is just a small part of who you are and it does not define you as a person and it does not take away any of the beautiful qualities you each possess.  It does not enable you to laugh, love, walk, and talk or even run if you want to. Celiac disease does not stop me from gardening, painting, reading a good book, being with family and friends and enjoying the simple pleasures of life.  Celiac disease has made me appreciate even more all of those things and especially all the kind giving persons that have crossed my path that have given me their gift of  love, support, knowledge and compassion.

            So go forth and LIVE your life, not in spite of Celiac disease, but with gratitude that it is ONLY Celiac disease.

Cécile Robichaud

I was officially diagnosed with Celiac disease in 2001.  Two of my sisters also have celiac disease and my 86-year-old mother was diagnosed five years ago.

My journey began in the summer of 2000, the year our oldest daughter was married.  I began having severe nausea and diarrhea.  Of course, I blamed it on the stress of organizing a wedding.  But after the event was over, I continued to have problems.  Nausea was so bad one day that my husband took me to outpatient because I was too sick to drive the car.  Tests were done but all were negative.  I then consulted my family physician and he ordered more tests including a celiac blood test but all the tests came out negative.

My symptoms continued off and on until the fall with numerous visits to my family doctor.  Although I did not have the common symptoms for gallstones, my doctor sent me for an ultrasound on my gall bladder and, sure enough, it showed I had gallstones.  It was March of 2002 before I saw a surgeon and had the stones removed.

I felt pretty good for a few weeks and then the symptoms showed up again.  I saw the surgeon for my six-week checkup and he told me some patients may encounter problems after surgery because the liver does all the work.  He prescribed some Zantac for a few months in the hope it would settle my nausea and said he would get in touch with me in three months to see how I was doing.  To my surprise, the surgeon’s office called at the end of three months and, since the symptoms were still present, they asked me to come in for a chat.  After discussion, the surgeon referred me to a gastroenterologist, Dr. Schweiger.  When I told him that I had two sisters who had Celiac disease, he immediately ordered more tests – including the new and improved celiac blood tests.  Sure enough, the doctor called me with the news that the celiac blood test was positive and that I would have to have a biopsy.  Two weeks before Christmas I received confirmation that I had celiac disease.  When looking back, over the years, I had always had digestive problems and diarrhea but always blamed it on stress from work or catching another flu bug – I realized I had a lot of these.

Even though I was familiar with the diet, since I had two sisters with celiac disease, Dr. Schweiger suggested that I see a dietician.  My husband and I met with a dietician and then paid a visit to Judy Burgess to make arrangements to join the Moncton Celiac Association.  Judy also gave us a lot of good cooking tips.  Then my sister Cécile, who was the first one in our family to be diagnosed with celiac disease, came over to my house to go through my cupboards and eliminate foods that I could no longer have.  It turned out that I did not throw out much, except flours, because when I cooked for my sisters I would buy gluten-free things like spices, ketchup, dressings, etc.  Cécile also helped us with our first gluten-free grocery shopping.

Living with celiac disease is not the end of the world as long as you have support from your spouse, your children, your family and your friends.  I am lucky to have all that.  My husband is a great cook and is always trying out new recipes or modifying recipes so they taste better.  My children always make sure that the meals they cook for me are gluten-free.  Some family members are familiar with the diet and do their best to accommodate me.  We are also very lucky to have great support from the Moncton Celiac Association.

Like everything else, keeping a positive attitude will get you through anything.