THIS IS MY STORY

By: Betty Beatty-Powers

     I must begin my story by relating a little background information.  It has been stated that “hindsight is always 20-20”.  Looking back upon events that unfolded in my life, I am able to see the possible correlation of these events and my being subsequently diagnosed with Celiac Disease.  I believe that Celiac Disease began to manifest itself following a severe traumatic experience, coupled with the genetic factor.

     In December, 1993, my first husband and I were involved in a horrific car accident which instantly took his life and left me in very critical condition for a lengthy period following the accident.  Up to this point in my life you would probably have considered me to be  a very healthy, energetic individual, holding down a full time job as a  Human Resources Officer for  School District No. 2, with  a finger in more than one  “pie”, and, essentially, “burning the midnight oil”.

     A couple of years following this accident, my Mom, who came to live with me, became extremely unwell.  Long story short…she wasted away from 140 pounds to 55 pounds at her demise.

     Within the few short intervening years since her death, great advances have been made in the medical field with relation to testing and diagnostic procedures for Celiac Disease.  : In retrospect, looking back upon her symptoms, I would say from a laywoman’s perspective that she really was suffering from Celiac Disease, which by then had ultimately resulted in pancreatic cancer...

     Now that we have established a genetic link, here is the “rest of my story….

In 2001, I began to have periods of declining health.  Some of the displayed symptoms included extreme tiredness, abnormal liver enzymes, elevated blood sugar readings, itchiness, a nasty “iron-like” taste in the mouth to name a few.  Since I had remarried, and my husband and I spend the winter months in Florida, quite a bit of time elapsed prior to my being referred to a gastroenterologist.  By the way, I often say…”I know the location of every single washroom from St. Anthony, Newfoundland to Panama City, South America and from Moncton, New Brunswick to Needles, California and all parts in between”!

     By the time that I was able to see the specialist, in addition to the above symptoms,  I  had  progressed to suffering a dramatic weight loss in a very short period of time;  had to get out of bed two or three times each night because of severe diarrhea; and suffered almost daily from bouts of nausea.  I would meet people who had not seen me in several months, and they would almost “stare” at me in disbelief….like “what has happened to you?”

     Finally, in July, 2003, thanks to the expertise of Dr. F. Schweiger, and following blood tests and a biopsy, I was diagnosed as having Celiac Disease.  Although this revelation was overwhelming at first, I took Dr. Schweiger’s advice and called Judy Burgess.  She immediately “took me under her wing”, giving me guidance, helpful information and a basket full of home-baked gluten free food.  I was amazed at the level of support that was available to me through the Moncton Chapter of the Canadian Celiac Association. 

     The GOOD NEWS is…there IS LIFE after the diagnosis!  I will be the first to agree that having Celiac Disease changes one’s life forever.  It affects one physically, mentally, as well as socially.  Unreservedly, I will say, I DO NOT CHEAT!  It is so very important to follow the gluten free diet to the letter.  I do not leave the house without my little brown bag of gluten free goodies…in fact; it has become my “signature trademark”.  If you follow the diet, you WILL feel better within a relatively short period of time. 

     We are so fortunate here in Canada to have a wealth of gluten free products that are so readily available at our super markets and health food stores.  The products are so well labeled which is a big bonus.  And….right here in the Moncton area…WE HAVE ROSIE’S BISTRO!!.   I AM TRULY THANKFUL!   Gee Whiz!  Do we really have to leave for Florida in November??

Sincerely,

DOCTORS … DOCTORS… TESTS

BY: CATHY FISHER

Mike had asked me to write up a little story about my journey with Celiac.

    Like most people with the disease . . . .when did it start?

    My Name is Cathy Fisher. I’m a proud Cape Bretoner and from a family of 9. While growing up I was always sick. I remember being in the hospital, going to the doctor more often then the other children. I can remember taking iron pills and vitamins from a very young age. I was never as active as the other children on the street. I also remember my mom buying Sunrise powered milk because the doctor told her that it was better for me. They had thought that maybe the whole milk was making me sick.

Doctors . . .doctors . . . tests . . .tests

    I was always tired. When I moved out West at age 25 I got real sick . The doctors in Edmonton told me it looked like I had allergies. But they could not find anything else. Even though I could not keep any potassium or iron in my body. But, off course, the doctors told me it was normal for a woman’s iron to be low.

My husband, daughter and I moved back East so my husband could attend University. While living in Halifax and working full time I started getting sick again. First it was a cold then my doctor told me I had an irritable bowel. I had lost a lot of weight and was very fatigued. Then my doctor told me that it was due to stress with my husband being in University full time and me trying to keep the bills paid. So he sent me to a Psychiatrist who told me I was not depressed and that he felt there was definitely something physically wrong. After ending up in Emergency on Christmas day my doctor decided to send me to an infectious disease doctor at the V.G. There they ran a bunch of tests and said I had Chronic Fatigue Syndrom (CFS ) From there they sent me to the Nova Scotia rehab as a day patient to learn how to deal with the pain I was having. I was still eating cereal with no milk and bread. My stomach was always sore. The doctors told me that some people with CFS have IBS plus bad stomachs. One day while at the doctor’s office in Halifax he told me (and I will never forget his exact words) "Cathy someday you will meet a doctor who will know the right test to do and discover what is really wrong with you." He believed that CFS was the body’s way of telling you there is something wrong. But of course my doctor in Halifax did all the tests he thought were necessary.

     From Halifax we moved to Boiestown N.B.;  I had a doctor in Fredericton who really didn’t listen to my complaints. He blamed all my troubles on CFS. He kept telling me that doctors really didn’t understand CFS and I had to live with it.

     Then we moved to Sussex. My husband and I met with Dr. Stevenson and I told him about my illness and asked him to take me on as a patient. He agreed. When I started complaining about things going wrong with my body, he did blood work and called me in to hear the results. He told me my Iron was way down and asked how many Iron pills I was on. When I told him 2 a day he asked if I ever had an upper GI done. I had never had one, so more tests, here we go. Dr. Stevenson called me back and wanted to see me.

Now we are getting somewhere . . .

     He told me it showed Celiac Disease. (I had never heard of it) He then told me that he would have to send me to a gastro intestinal doctor to really diagnose me. Plus he also told me not to start the diet till the specialist told me to. So there I go again to St John for the small bowel biopsy. After the doctor did the procedure he said it looked like I had Celiac but he would have to wait for the results. He also told me my small intestine was very bad. After 2 weeks the doctor called me back and said the tests came back positive for Celiac and to start the diet ASAP I got in touch with Georgie Charters who I was told had Celiac. Georgie gave me a lot of information and helped me through it. Plus she told me about the Moncton Celiac Society and from there I met Judy Burgess. She was a big help to me as well. After being on the diet for 6 months I had another Biopsy done. The second one showed a big improvement on the small intestine.

     That was in 1997. I still have CFS but I do feel a lot better with being on the Diet.

Sincerely,

Cathy Fisher

I aM AFTER YOUR JOB!

         Hi my name is Ryersan Bell and I have Celiac Disease.

         I was born Sept. 2000, healthy and happy, and continued to develop

normally until I was six years old.

         My teacher was the first to notice that something was wrong. I had a hard time sitting still and paying attention in class.

         Sometimes I was very tired and I was always hungry. My Mom and my doctor are pretty smart and tested me for lots of things. (Thank you Dr. James). It’s a good thing they did because my insides were getting damaged and I would have gotten much sicker.

         Going on a special diet when you’re six years old is very hard; missing out on all your favorite foods is even harder. Sometimes I get sad, like when I go to my friends birthday parties and can’t have pizza or cake.

         Sometimes it makes me mad, it’s not fair because I’m just a little kid you know. Celiac never goes away, and everyday I have to make smart choices about everything I eat. But most of the time I think about all the good things I can have, like my birthday Sundae bar.

         It would help Mom out if the foods were labeled with gluten-free labels. She would worry less about me getting sick. What would help also is if the food products were marked nice and big that it contained gluten.

         Last week I got to meet the of boss of Celiac in Moncton (also known as Mike Murphy) I told him I raised a lot of money for the Celiac Walkathon ($320.00 to date) and he said he was proud of me.

         I really wanted to do the walkathon as soon as Mom and Dad told me about it. I think it’s very important to learn about Celiac Disease and maybe someday find a cure.

         I wrote an e-mail to everyone I know and asked them to please help so maybe someday I could eat Frootloops and KFC again. Going door-to-door is very hard because not many people understand Celiac and what it does to my body.

         I am lucky that my family and friends and all my Mom’s workers wanted to help.

         I worked really hard at it but I am used to working hard, because being gluten-free is hard work too.

         Maybe when I grow up I can be the boss of Celiac and help lots of people too. (look out Mike, I’m after your job).

         Thanks to my doctors, my family, my gluten-free diet and my new friends at the Celiac Association. I am now on my way back to being my happy, healthier self.

Thanks for reading my letter.

Ryerson Bell

“A SHOCKING REVELATION”

   In the spring of 1985, I was told I might have leukemia. At this time I was an emergency room nurse mining and administering chemotherapy drugs to patients. As a result of my work, I was subjected to blood work every six months. My family doctor advised me the results of my test was not normal and ordered a repeat test with the same results.

    I was then referred to Dr Rubin; this was of great concern to me and my family. All the tests done by Dr Rubin were negative. What a relief. But he said to me “I think you have celiac sprue.”

    Thinking back I had lost weight, was always tired, frequently nauseated after eating and was taking medication for low hemoglobin and folic acid.

    Arrangements were made for me to see Dr. Lightfoot. Following a small bowel biopsy, the diagnosis was confirmed, I had celiac disease.

    Along with celiac disease I was diagnosed with thyroid disease, osteoarthritis and osteoporosis. Thus began a new way of cooking and reading labels. There were no books to read, very few recipes to be found twenty-two years ago. Today eating gluten-free is easy; there are so many gluten-free foods available.

    I have encouraged family members to be tested, to date there are thirteen diagnosed with celiac disease. Being the first in my family to be diagnosed, I am frequently called upon for advice.

    Joining the Moncton Chapter has been a wonderful experience providing much needed information on maintaining a gluten-free lifestyle.

Sincerely,

Margaret Lutes

Living With Celiac

                                                BY Georgina Steeves

I was diagnosed with Celiac in December of 1999.  With the help of the dietician at Moncton Hospital and Judy Burgess (who was excellent) I began my new way of living. The hardest was learning to shop for groceries, reading labels (that I knew nothing about), I relied on the pocket dictionary which I carried with me at all times, it seemed to take hours that first time, but, as time went on it has become a lot easier, as I now know what to look for, but label reading has become a part of shopping for me and I never pick up a can or package without reading the ingredients.

My camping Friends will tease me about not sharing with them, but they don’t mind as Reg, my husband, will share his food . Usually when we have a lunch together, I will take lunch to share with others, but mine will be on a little plate by itself. If I take some cookies or squares that are gluten free, I still take my lunch separate, and do not, if any left over, put back in with my other food but put in separate container just in case they have been touched with gluten, Reg enjoys them then.

When going to potluck suppers I always take something that I can eat as it may be the only thing that I can have, one thing I like I always get to be first.  Travelling with a cooler, by car, plane or bus, has become a way of life. I always take my own toaster, some rice cakes, crackers, cheese, muffins, Fruit and candy. Just something to get by with until we reach our destination. Travelling by motor home is the best as I have everything right with me. One of my favourite lunches is a rice cake with cheese, onion, bacon or ham and microwave for fifteen or twenty seconds, also good is a rice cake with miracle whip, and tomato or cucumber, I find they are just as good as a sandwich. I never am without the plain rice cakes or the hot kids natural crackers.

I enjoy going to Rosie’s for a treat but most of the time I do all my own baking, trying my old recipes with gluten and changing them to gluten free… some misses that go in the garbage, but are usually tried again till I get it right, usually with help from a phone call to Judy B. (Who is a great help in time of trouble.)

To me now a gluten free diet is a way of life, and you don’t have to feel sorry for yourself, as there are so many foods out there that we can have, to what it used to be, and so many more restaurants that are acquainted with gluten free diet.  I find many are so willing to help in any way possible, that I feel confident in eating at their place.

I have already purchased the new book “Stay Well With Gluten Free” and would highly recommend it to everyone. Nice job Mike and thanks to Wanda for all her hard work in putting it together, Thanks to you both for a job well done.

Even though you use the book for a guide DON’T forget to still read labels, as you never know when a product has been changed before we get the information.

Living a gluten free life since 2000 and never felt better.

Down to less than one hundred pounds in 1999, but can’t say that anymore, and extract of wild strawberry no longer a way of life.

Sincerely

Georgina Steeves

Member-at-Large, Moncton Chapter CCA