In 2001, during a routine visit, my family doctor was reviewing my file while I was, “once again” and somewhat rather sheepishly, repeating my regular and repetitive list of complaints.No one wants to be thought of a chronic complainer, but, at that time and with no fault of my doctor, that is how I felt about myself.For the previous nine years I had been seeing the same caring doctor and he had been prescribing medications for me to treat such ailments as indigestion, gas, iron deficiency, hypothyroidism, fatigue, insomnia, migraine, joint pain, fibromyalgia, and depression; I had some of these symptoms since childhood and back in 2001 I was 49 years old.Needless to say, I was on a lot of drugs, some at very high doses, with seeming little or no benefit.In fact, the side effects of the medications just compounded problems rather than helping.
During the 2001 visit, my doctor wondered aloud if I had Celiac Disease, which I new next to nothing about; a blood test result was showing an abnormally high indicator of CD.A quick consultation with a gastroenterologist, and subsequent biopsy for CD, showed “inconclusive results”. While there were some microscopic abnormalities noted, I was advised NOT to start a GF diet.My hopes of finally finding a manageable cause of what was “wrong” with me were dashed and I was extremely disappointed.It was back to the drawing board for me.
It was in 2004, and three years later, that another biopsy proved that in fact I did have CD and advised to start a GF diet.My first question to the specialist was “how do I do that?”I was referred to a hospital dietician and advised to join the Celiac Society.He gave me Judy Burgess’ phone number and before long I was welcomed into the Moncton Chapter and began the journey with my new family.At the same time, I had a home visit by George Warman, my mentor, who brought with him plates of goodies from his kitchen and Judy’s.George explained how the diet and chapter functioned and answered a lot of questions I had.Things were surely looking up for me.
My thoughts at the time of my positive diagnosis were a lot more positive than negative.While dieting of any type is never very appealing, I felt fortunate that with some time and careful planning I could make a huge difference in my life.
I have been following the diet now for three years and, overall, I am feeling much better.I believe at the beginning of my GF diet that I was unknowing ingesting “hidden” gluten, or gluten from sources I was ignorant or unaware of.
For me, this education (knowing “safe” from “unsafe”) is ongoing and I am constantly learning about ingredients and gluten sources, and I expect I always will. For example, at a recent chapter meeting, I learned that a toothpaste I sometimes used contained gluten!The same also applies for some soaps and shampoos.
I try to attend all of our chapter meetings, and as well, I attend a lot of the gluten free cooking classes offered by the Atlantic Superstore; I find the dieticians there very caring and knowledgeable, and an added benefit is the chance to socialize with fellow members and friends.The resource materials from the national society and the Moncton chapter, as well as the support and friendship of the fellow members, have been invaluable to me.
On the advice of the specialist, I have advised all of my immediate relatives that I had CD and, with this in mind, that they should discuss their own health with their doctors. Thankfully, my two teenagers have not shown any symptoms to this point.My mother, who passed away in 1989, had many of the same symptoms I had, but was never diagnosed.For myself, I feel fortunate that, although I was unknowingly negatively affected by gluten for most if not all of my life, we have the medical testing and dietary choices that are available today. Sincerely, Jim Gibbons, Moncton CCA Member ________________________________________________
EXPAND YOUR HORIZON!
By Sheila Jack
As we grow older and retire we are advised to keep active, expand our horizons, take up a new hobby, make new friends, keep an active social life and, perhaps, even to get a new pet.
After several months of (medically) looking into these ideas, it was decided that I was to get a new pet. This pet could not be walked or cuddled but it was to be my constant companion and its name was “celiac”
In the fall of 2006, the above mentioned was taking my life in a new direction – all because of “celiac”.
Expand my horizons-I had only heard of 2 other adults in my situation but had studied about it in children in my nursing studies.
One of my friends came for tea & served her “no flour” squares—they had 1 cup of graham cracker crumbs! Little did I know!!
Off to the library to discover “the Gluten Free Bible “by Jax Lowell. I took notes & more notes while trying to digest every word.
Gee!! Families were known to have the same pet……sister Barb & niece Tammy were on the list.
A new hobby: learning something new –cleaning out the kitchen & being aware of contamination became my hobby for every meal, every day. Learning a new way of cooking (cooking not being my strong point ) was required for all meal preparations.
Had to be checked for gluten contents—this hobby keeps one busy……
Keep an active social life- join the celiac club, attend meetings, receive news letters
such as this as well as information from the Canadian Celiac Association, both full of suggestions as to how to look after our “pet”. Attending the Canadian Celiac Conference in May was quite the social event .People from all over Canada attended.
Make new friends –You bet!! A whole meeting room of them –all willing to help a beginner like me. Many thanks to all of you.
Rosie & her crew ( & her gluten free baking) are my best friends. They do my cooking. How lucky can I be?The very month I was told about celiac, Rosie’s Bistro opened. It is only a 15 min walk from our house & her GF baking is always fresh.
I felt lucky a year ago to get diagnosed quickly & no pills or treatment necessary. Once onthe diet, it wasn’t long before the embarrassing gas & mucous in my throat disappeared.
To say my horizons have broadened in the past year is an understatement.
Sincerely,
Sheila Jack
Member of Moncton Chapter CCA
MOST HAVE NO IDEA WHAT AILS THEM
By: Sheila Parker
Bread, the most basic of foods, is making millions of people sick, and most have no idea it’s what ails
them.Little did I know that I was one of those people.
I am 49 years young and most of my life I have experienced anemia, chronic diarrhea, cramps, bloating, constipation and abdominal pain.When traveling I would always become sick and thought the problem was the drinking water or food poisoning.In 1998 I had a colonoscopy and was diagnosed with irritable bowel syndrome.I was told to increase my fibre intake.So, I ate more whole wheat bread, bran muffins, whole wheat pasta, bran cereal, etc.Once again, little did I know that I was making matters worse.I continued to experience all the above symptoms, except they were more extreme. The abdominal pain would occur after every meal and was getting so bad that I physically and mentally thought I would never feel well again.My family doctor decided to send me to a gynecologist as he felt the abdominal pain may be attributed to problems with my reproductive system.After several years and numerous tests the gynecologist recommended that a hysterectomy would be the best thing for me.However, he suggested that a pre-surgical procedure be done just to make sure that surgery was necessary.It was during this procedure that the doctor discovered that everything was fine except for the bowel and that I should be tested for Crohn’s disease.
After more tests were done, Chron’s disease was ruled out.It was then and only then that my doctor suggested that I have a blood test to see if I had Celiac disease.On a crisp day in November of 2002 I tested positive and was immediately put on a gluten-free diet.Upon leaving the doctor’s office I remember thinking, “ I am literally going to starve”.No bread, no pasta, no muffins, no pizza.... I weighed 105 lbs. and would surely waste away!The next week I went to our local farmers’ market in Sackville, and noticed that a vendor was selling gluten-free muffins.Upon asking if the muffins were “really” gluten-free, Shirley Chrvala overheard my question.Shirley and her husband sell homemade soaps at the market and she has been a Celiac for many years.She was my knight in shining armour, my angel, and the best thing that had happened to me in a long time.Shirley immediately informed me that there were lots of things to eat and that I should call Judy Burgess who was a member of the Moncton Chapter of the Celiac Association for more information.The next day Shirley arrived at my office with a batch of banana muffins and the telephone number for Judy Burgess.
Upon calling Judy, another angel, I soon learned that I would not starve and that there were lots of things I would be able to eat, but I would have to learn to cook with different flours.Judy had so much information and was very understanding and compassionate; I thought I would cry with tears of joy and relief.I immediately joined the Moncton Chapter and two days later, Judy Carlisle, another angel, arrived at my home with a basket of gluten-free baked goods and lots of recipes.
After two weeks of being on a strict gluten-free diet, I began to feel better and as each month went by, I could feel myself gaining strength.
I cherish all the friends I have met at the various Moncton meetings and try not to miss any celiac social events.Through the Moncton chapter I was introduced to Rosie and her delicious gluten-free food and now regard Rosie as “the best friend a Celiac could ever have”!
I truly do not know what I would have done if I had not met Shirley and the two Judys.My life is better because of these people, gluten-free food and the Moncton Chapter.
Sincerely,
Sheila Parker
YOU ARE A CELIAC AND WILL HAVE TO SEE A DIETICIAN
BY : Margaret Patterson
In 1966 I was experiencing bloating and pain in the abdominal area, and underwent an endoscopy.I'll never forget the doctor's words, "You are a celiac and will have to see a dietician."The only trouble was that the dietician in my small hospital was not very well-informed about CD, and as I recall, my only instruction was to avoid bread.I tried to follow that advice, but it was difficult, and bread substitutes were expensive and not very tasty.In addition there was no real follow-up on my case, and I was left to cope on my own.
By 1998, I was very ill with knife-like pains in my abdomen.Doctors who examined me considered Crohn's Disease, bowel cancer or diverticulitis.Eventually I saw Dr. Schweiger and underwent three days of tests in the MonctonHospital.Dr. Schweiger re-confirmed celiac disease and found that my blood was dangerously low in iron, magnesium and other essential elements.A bone density test revealed that my bones were very porous.I was told my condition was grave.
I was immediately put on a strict gluten-free diet and received dietetic counselling.This time there was a follow-up scope a few months later. I joined the Moncton chapter, and although I am unable to go to all the meetings, I enjoy those I do attend, andI thoroughly digest each issue of the national and chapter newsletters. When I think of the difference between my experiences in 1966 and 1998, I am so thankful for the work of the Canadian Celiac Association and its chapters in raising awareness of celiac disease, and in helping make the gluten-free lifestyle so much easier. I recommend membership in the CCA to give the Association a larger voice in lobbying for benefits to celiacs such as research and testing, improved food labelling and a break on our taxes.
Looking back, I feel that I have no doubt been a celiac since a child.I remember frequent stomach pains, a big tummy on my small body, and the inability to put on weight.Ofmy several pregnancies, only one child was carried to full term.In retrospect, I feel that these conditions were all related to celiac disease.
I have now been living gluten-free for almost ten years, and although I have several other health problems, I am thankful that the stomach pains and bloating are gone.I am very sensitive to even a minute amount of gluten, and my body soon tells me when I accidently ingest it. I am hospitalized for other problems on occasion, and am noticing a greater awareness and sensitivityto my celiac condition.A far cry from the earlier days when I was the lady with the mystery illness.
Sincerely, Margaret Patterson
Learning and Living the Gluten-Free Lifestyle with Dermatitis Herpetiformis
In 1965 I began to experience a cycle of symptoms which would start with a intense burning itch on my elbows and knees, followed by the appearance of fluid-filled blisters which would eventually break and heal, bringing relief until the next episode. For several years I was treated for psoriasis, and was only correctly diagnosed with DH in 1973 after a skin biopsy and endoscopy procedure.I was put on Dapsone, and was told that I could eat normally, but should avoid iodized salt and shellfish. After a while, a gluten-free diet was advised and I was sent for diatetic counselling.I still have that hospital-produced booklet, which talked about the "low gluten" diet, and listed wheat starch among the substitutes for wheat flour.A couple dozen recipes were included, the only GF recipes I saw for afew years.White rice became my substitute for pasta - I didn't learn the benefits of brown rice until much later. There were a few bread mixes on the market at the time, but the end product was dry and unappetizing and made better croutons than bread.After several disappointing attempts, I gave up on bread, learned to enjoy rice crackers and rice cakes (yes really),and devised a couple of reliable recipes for cornbread and muffins which I use to this day.
Of course there was no Canadian Celiac Association at the time of my diagnosis, but I did eventually hear of a few celiacs, but not another soul with DH.When I referred to myself as a celiac, the dermatologist vehemently stressed that I was not a celiac and should not call myself that.I didn't feel that I was very ill (certainly not as ill as those celiacs I heard about) nor did I realize the critical necessity of being absolutely gluten-free.I innocently consumed Kellogg's Corn Flakes and Rice Krispies as cereal, as coating mix, and in yummy squares.I ate cream soups - after all wheat was pretty far down on the ingredient list - and I only used them as sauces.(I'mappalled by my ignorance as I write this.)How could I insult a bride by refusing a piece of her wedding cake?If I got itchy, I upped my Dapsone on the doctor's advice for a couple of weeks and then worked back down to my original dose.My dermatologist had my blood checked frequently which I expected, and consistently inquired about numbness of the fingers and toes which I always wondered about.
My careless ways eventually caught up with me and in 1993 I was losing weight and feeling unwell.A scope revealed flattened villi, and I was immediately sent to a dietician who stressed that DH required the same strict gluten-free diet as celiac disease, and told me of the local CCA chapter.When I telephoned the chapter, the first person I spoke to also had DH, and I was so excited to know there was another one of us out there with the obviously rare and nearly unpronounceable condition!The chapter welcomed me and gently but firmly told me I had to give up my Kellogg's crutch, my soupy sauces, and my other gluten vices.But they also told me of the many alternatives available, and provided me with information I wish I had years before.
After four years of support andfellowship and lots of GF goodies, I moved to New Brunswick and immediately joined the Moncton Chapter where the many benefits of membership continue.The food just keeps getting better and better. I recently ate fortified brown rice pasta that convinces me I can go back to my beloved macaroni and cheese. I have ventured into breadmaking again with pleasing and palatable results. I have almost stopped using the words "real bread" and "normal food", counter-productive terms to say the least.How much better to proudly say "my bread" or "our food".Non-celiacs who sample my GF food tell me they no longer feel sorry for me, and wonder what all the fuss is about.And I guess that is the attitude we all should adopt, rather than pining for our old gluten favourites.
As for my DH, I am one of those who was never able to give up Dapsone, even with a strictly GF diet.Over the years my maintenance dosage has gone from 25 mg per day, to 50 mg, and recently to 75.I certainly hope that is the last increase, because Dapsone can have unpleasant side effects.My blood tests have changed over the years, and now include creatinine, liver function, B12, ferritin, folic acid, and methemaglobin every six months.I also take folic acid tablets and an enhanced potency B Complex vitamin, and if I neglect to take them for a few days I experience some tingling in the hands and feet.I am now extremely sensitive to gluten, and have determined that I feel the itching 14-16 hours after gluten ingestion.After years of eating very few baked products, I sometimes feel a mild itching when I eat a GF meal consisting mainly of pasta and baked goods.I wear a mask when working with gluten flours, and question everything I eat - even at the risk of offending the cook. Perhaps non-celiacs consider me picky and "high-maintenance" but I no longer care what others think.
Thank goodness for the work of the CCA and its chapters, and the on-going effort to educate the medical profession and the general public about CD and DH.Now when I mention that I cannot eat anything made with wheat, rye or barley, folks often say that they have heard of that, and sometimes even come up with a passable pronounciation of "celiac".I leave it at that, and only venture into DH territory with those who love big words.
Sincerely, Judy Carlisle
I was finally diagnosed with celiac disease about 38 years ago after a ten year battle of fatigue, low blood, nausea, loose bowel and severe muscle weakness. As a child I seemed to tire easily but had no health problems. It all began with weight loss even though I seemed to be eating o.k., followed by being very nauseated most of the time. I noticed a lot of weakness in my muscles especially in my legs I began a series of doctor visits from G.P.S. to specialists which totaled approximately 20 doctors before I was finally diagnosed. I was told it was arthritis, M.S.; several blood disorders etc. until finally it was all in my head. During all these visits to the doctors I spent a month in the Saint John regional hospital, a month in the Moncton city hospital and finally a month in the investigation clinic at camp hill hospital in Halifax where I was finally diagnosed by Dr Langley. During my stay in all the hospitals I underwent constant testing for every disease you could imagine. I was put in the whirpool at Moncton city for my muscle weakness, had numerous x-rays, scans, iron injections, b12 injections, bone marrow testing and biopsies. When I was finally referred to Dr Edgett in Moncton thinking it was an arthritic problem he was the one who finally decided I should be sent either into the states or Halifax as he wasn't sure what the problem was. I opted for Halifax and had a consultation with Dr Langley who immediately felt if I would go into hospital he was almost certain he knew what my problem was. We were living in Moncton at the time and I was not sure I wanted to be there for a month of more testing etc. It was a miserable month being away from home knowing no one and so sick. I was immediately put on a non restricted diet eating everything. All the while I was having constant tests, biopsies being done by interns who sometimes had problems and the same thing would be done over and over again. I was finally put on a gluten free diet and sent home to return in 6 weeks for my checkup. When I left hospital I was so weak I had to have help walking out. Six weeks later after thinking I was going to starve to death with no bread to make a sandwich and absolutely nothing in a sweet at all, I returned much stronger and amazed both Dr Langley and all the interns how quickly I came around. I thought it was a miracle. I continued to improve and went to Dr Lightfoot for a checkup who told me about the Moncton celiac chapter and had Judy Burgess call me. What a blessing that was. I was introduced to gluten free breads, rolls, sweets and given so much information. It was wonderful to receive the bulletin with new recipes and information on locations to find certain foods as well as updates on products. Numerous members of my family have had the blood test done for celiac disease and thankfully no one has any problems. I feel public awareness is one of the main things our chapter should do lots of work on so no one will have to go through the long ordeal I encountered. Sincerely, Ruth Lambe - Member of the Moncton Chapter CCA
By Doug Stoddart
I WAS AN UNKNOWN CELIAC UNTIL 15 + YEARS AGO As a young person growing up, I was never into sports or such activities; I just didn’t have the stamina that was needed. During my high school years I didn’t take sandwiches to school as they seemed to hurt me. On the small island in Nova Scotia where I lived no one ever heard of Celiac disease. I learned to live with the discomfort, both bowel and abdominal, for many years. Approximately 17 years ago I became very ill, lost a lot of weight, and was diagnosed as anemic and malnourished. My family doctor was having trouble with a complete diagnosis as he felt there was something more happening with me. Dr. Schweiger was called in and many tests were done and I was told I had Celiac disease, along with Primary Biliary Cirrhosis of the liver. The PBC was a result of my immune system breakdown. A liver transplant is a common treatment for people with advanced PBC (I had a successful liver transplant in January 2002.) I have osteoporosis, both as a result of Celiac and PBC, taking Fosamax, Oscal and Vitamin D for many years. Also as a result of PBC I am now on dialysis at the Dr. George Dumont Hospital three times a week and patiently waiting for a kidney transplant. (I went into acute kidney failure in November 2001, which made it possible for me to get a liver transplant quicker). I attended the first meeting of the Moncton Chapter CCA and joined shortly after. My wife and I have found that we would have been lost without them. Just attending and talking with fellow celiacs has been so helpful. Even more helpful has been the exchange of recipes and learning how to cook gluten free. (My wife has had many successes and many failures in the kitchen) . It all takes time. We do not buy any prepared gluten free food. Bread, rolls, pies, sweets, etc., we make ourselves. Over the years we have not eaten out a lot, but when I have, there has been no problem getting served gluten free. Most restaurants are very willing to be of help. In closing, my advice to all celiacs is to become a member of your local association. The fellowship is important and it will keep you informed and up to date. Sincerely, Doug Stoddart
CELIAC DOESN'T HOLD ME BACK!
BY Keillor Steeves
The long buffet tables are piled high with a large assortment of delicious casseroles, sandwiches, and pastries typical of the occasion. Two lengthy queues snake their way past both sides of each table while those in line help themselves to generous portions, heaped eagerly onto their plates.
This scenario is one played out often for Celiacs all over the globe as they frequently miss out on the ever-present food found at social gatherings.
Just like the disease itself, the consequences of Celiac disease affect those of all ages. As a grade ten student at Harrison Trimble high school, I regularly experience situations where I must refuse to eat certain foods due to my "allergy". Although my Celiac disease makes me rather unique, for the most part, my friends are always understanding and willing to accommodate. The odd time, however, someone will forget:
"Do you want one of my cookies,"
someone may ask innocently.
"I’d love a cookie," I respond with a good-natured grin, "but I can’t have one.""Why not" were the words barely out of their mouth before they would have remembered? "Oh yes! – It is gluten, right?" On a more positive note, since being diagnosed with Celiac disease, I am more aware of those around me with other diet restrictions. I am definitely more sympathetic to diabetics or those with anaphylactic allergies. Nevertheless, being a Celiac doesn’t hold me back! My marks in school have stayed constant and, as a member of the J.V. soccer team, I’m heading to the provincial championships this weekend!
Finally, I publicly thank my family for their wonderful support, particularly my father, who is also a Celiac.
Sincerely, Keillor Steeves,
Member of the Moncton Chapter CCA
BY CAROL FRASER
A Personal Experience
A Chapter Member’s Experience With
Celiac Disease
_______________
In January 2003, almost 4 years ago I was diagnosed with Celiac disease after Dr. Lightfoot performed a small bowel biopsy. During the previous 17 years I had been troubled with what was believed to be Irritable Bowel Syndrome. I found it tolerable as most episodes occurred perhaps only once a month or even less frequently. These episodes usually occurred during periods of extreme stress.
Since 1994 I have skin rashes occurring on elbows, abdomen and legs that I thought were caused because I have a very sensitive skin and must use hypo-allergic and fragrance free products. The Dermatologists that I was sent to were unable to determine the cause. The medications that were prescribed helped the itching but did not clear up the rashes completely.
In 1996 I felt extremely fatigued and visited my family doctor. She ordered blood work since my daughter had been diagnosed as having hypothyroidism two years previously. I was diagnosed with hypothyroidism, which means the body does not produce enough thyroid hormone and I now must take medication daily.
I regained my energy levels but again in November 2000 I was feeling very fatigued. When I visited the doctor he suggested perhaps I could be deficient in Vitamin B12 and he ordered blood work. I now take Vitamin B12 tablets daily and enjoy energy again.
I read an article in July 2002 in Woman’s World Magazine about Celiac disease. It discussed in the article that a person could have Celiac disease without the severe bowel symptoms but have a skin disorder. On my next visit with my family doctor I discussed this article with her. She was previously aware and discussed the fact that my sister had been diagnosed with Celiac disease 9 years earlier after her doctor investigated her severe anemia. She also suffered various bowel symptoms and fatigue. My doctor then felt I should have the screening blood work for Celiac disease and I tested positive for antibodies to wheat. She said I would need a small bowel biopsy as soon as it could be scheduled.
At the same time I was diagnosed with Celiac disease my fasting blood sugars were slightly elevated. As my mother was diagnosed with Type 2 diabetes, my doctor
sent me for Diabetic teaching at the clinic along with
another dietician for assistance with the gluten free diet. Following both the diabetic and gluten free diet I have lost 30 pounds and my blood sugar levels are in normal range. I do not require medication to regulate my blood sugar levels but I need to be vigilant with my diet as I’m at a greater risk of developing diabetes because of my family’s health history.
Needless to say I found the diagnosis of celiac disease and diabetes overwhelming. With my husband’s total support I have adjusted to this diagnosis. The first few visits to the grocery store were often 2 to 3 hours as we spent a lot of time reading labels.
In these past 3 years I am feeling well and happily no longer suffer any episodes of irritable bowel. I did have some problems with constipation when first on the gluten free diet but my dietician had several suggestions and my favourite is flax seed. I enjoy flax bread and I spread flax meal on cereal, yogurt, etc.
I have encouraged my siblings to be tested and my brother was diagnosed last year. Since talking with some of our more senior members I realize how much harder it was for them in years gone past. I realize how fortunate I am to be diagnosed at this time with so many gluten free foods available. I also realize the need for public awareness and I am thankful for the founding members of the Moncton Chapter and the present executive for providing a vehicle where we can receive information, support and friendship.
I received some very good advice when I attended one of my first chapter meetings. She said "sit at a different table with different members at each meeting. Each person has their own story and are open to assisting and supporting each other". It is Celiacs helping Celiacs. It is our Maritime Way!!
