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Any Celiac(s) From Canada

Gerri

By Gerri
in Introduce Yourself / Share Stuff

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Gerri Explorer
Gerri
Posted

I am new to Celiac (54 year old female), even though I have watched what I ate for many years. I had Gluten problems for many years. Always sick at Christmas, and holidays, acid reflux problems getting worse, vitamin D deficiency, vitamin B12 low, and a list of other health issues getting worse.

Last year my doctor at the time told me to go Gluten Free for the rest of my life. He hoped it would stop the progression of other autoimmune diseases. Since going gluten free my diabetes is controlled, and my sleep apnea's pressure is coming down. I have since been diagnosed with Celiac.

I am from Ontario Canada, and wonder if there are there are others from Canada here.

Hugs

Gerri

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  • Replies 133
  • Created
  • Last Reply
psawyer Proficient
psawyer
Posted

Hi.

There are a number of Canadians on here. I'm in Toronto here at work.

Gerri Explorer
Gerri
Posted
  • Author

I am in Kitchener, just west of Toronto. I see a naturopath in Toronto, and hopefully soon a Rheumy.

Don't work too hard. Hoping to talk again soon.

Hugs

Gerri

Hi.

There are a number of Canadians on here. I'm in Toronto here at work.

leadmeastray88 Contributor
leadmeastray88
Posted

Hi there!

I'm from Winnipeg, MB.

I have a cousin who is Celiac from Halifax also.

curiousgeorge Rookie
curiousgeorge
Posted

Toronto!

I are really annoyed about ontario not covering celiac testing. I think its just criminal.

If any of you have a good celiac friendly doc in Toronto (GI) please PM me.

psawyer Proficient
psawyer
Posted

Back in 2000, when I was diagnosed, the blood tests were still very new and were not commonly done. I had the endoscopy and biopsy, which was covered by OHIP.

elye Community Regular
elye
Posted

Hi, Gerri!

I'm in Ottawa, and share the anger over OHIP not covering the blood panel cost. It cost me ninety dollars four years ago, and my dad had it done last fall for $120.00. Expensive, and at times meaningless, for my dad's results were "negative", and I continue to suspect they were false. :(:angry:

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Gerri Explorer
Gerri
Posted
  • Author

Some of the test are oovered but not them all. I had to pay $180 for two test I believe out of 4. My tissue Transglutaminase (sp) came back low celiac, plus other health issues which are associated with Celiac, gave me my diagnoses of celiac. Get your doctor to order this test (tissue transglutaminase). If you have been off gluten for a while, it is my recommendation not to go for biopsy. Damage can be done in any area of the duoderum, and missed by the biopsy. You will know that your Celiac, by the way you feel off of gluten. To go back on Gluten, causes you to become very sick.

Hugs

Gerri

Toronto!

I are really annoyed about ontario not covering celiac testing. I think its just criminal.

If any of you have a good celiac friendly doc in Toronto (GI) please PM me.

  • 1 month later...
princesskill Rookie
princesskill
Posted

im in ottawa

debbiwi56 Newbie
debbiwi56
Posted

Hello from New Brunswick. I was diagnosed about 2 and 1/2 years ago. I am 52. I was completely thrown for a loop with the diagnosis. I am an ovarian cancer survivor (10 yrs. now) so I'm afraid to say I had been suffering for what seems like eons before I finally gave in and went to the doctor. (I was so afraid that I would be told I had cancer again...my reason for putting it off). I try very hard to watch what I eat but still seem to feel like the dickens most of the time. My GI specialist tells me to continue with the diet and that's all I can do. Seems like I should be doing more....any ideas? :)

  • 3 weeks later...
Tomkitchener Newbie
Tomkitchener
Posted

Hi There, I am from Kitchener,ON,CA.

I am new to the forum, and have not yet been tested but will and pretty well am am sure I have some form of gluten intolerance. I have been on a gluten free diet for almost 2 months now and symptoms have significantly improved.

I look forward to getting to know everyone and sharing my thoughts with people in the same situation as myself.

  • 1 month later...
Northern Celiac Newbie
Northern Celiac
Posted
I am new to Celiac (54 year old female), even though I have watched what I ate for many years. I had Gluten problems for many years. Always sick at Christmas, and holidays, acid reflux problems getting worse, vitamin D deficiency, vitamin B12 low, and a list of other health issues getting worse.

Last year my doctor at the time told me to go Gluten Free for the rest of my life. He hoped it would stop the progression of other autoimmune diseases. Since going gluten free my diabetes is controlled, and my sleep apnea's pressure is coming down. I have since been diagnosed with Celiac.

I am from Ontario Canada, and wonder if there are there are others from Canada here.

Hugs

Gerri

Hi Gerri,

you found another Canadian as well. I am in Northeast B.C. in a very remote community(ft nelson) but am learning to cope with whats going on with me. I was finally diagnosed in April this yr2009 and have been working on going gluten-free ever since. I have gone through my own personal hell like you did. The worst part of it was the family doctor I was using wouldn't refer me to a specialist until he had his turn at me.

This was the worst part of it as I kept getting sicker. But you must have courage I have met celiacs who by all appearances have returned to normal health, and that is what I am shooting for.

Best Wishes

Northern Celiac Newbie
Northern Celiac
Posted
Hello from New Brunswick. I was diagnosed about 2 and 1/2 years ago. I am 52. I was completely thrown for a loop with the diagnosis. I am an ovarian cancer survivor (10 yrs. now) so I'm afraid to say I had been suffering for what seems like eons before I finally gave in and went to the doctor. (I was so afraid that I would be told I had cancer again...my reason for putting it off). I try very hard to watch what I eat but still seem to feel like the dickens most of the time. My GI specialist tells me to continue with the diet and that's all I can do. Seems like I should be doing more....any ideas? :)

Hi Debbie,

I am a brand new celiac(hahaha, april 2009) and have come to terms with the disease quite quickly. I realize that if I want to get healthy and stay healthy the only way to do it is to stick to the diet. I keep telling myself"no dammit I don't want to be sick anymore.

Best wishes

Felidae Enthusiast
Felidae
Posted

Hi,

I'm from Alberta. I haven't been on here much lately. But hopefully I can get here more often.

nomentanus Newbie
nomentanus
Posted

Victoria, BC here, moving to Toronto someday.

Forget the test if you are avoiding wheat now. The test looks for anitbodies and assumes you are eating a lot of wheat right now. If not, the test doesn't work.

Everyone should be screened for celiac - it would save your province an immense amount of health care dollars. So says Fasano himself:

Gut. 2003 Feb;52(2):168-9. [bELOW]

Comment in:

Gut. 2003 Feb;52(2):170-1.

Gut. 2004 Jan;53(1):154-5.

Gut. 2004 Oct;53(10):1545-6.

European and North American populations should be screened for coeliac disease.

Fasano A.

Division of Pediatric GI and Nutrition, Center for Celiac Research, University of Maryland School of Medicine, Baltimore, USA. afasano@peds.umaryland.edu

PMID: 12524393

Open Original Shared Link

misshollydolly Newbie
misshollydolly
Posted

Hi Everyone! I'm Holly and I'm from a little town outside of Edmonton, AB! I'm 22 and was diagnosed in feb this year and am having a pretty hard time coping with the diet change...there's no one else in my family with celiac disease, although my little sister is being tested right now, we're waiting for her results :( we're hoping it's negative b/c this really sucks.... anyways i dont really know anyone else with the disease, so i guess i'm looking for some friends that know what i'm going through

cooki.dough Rookie
cooki.dough
Posted

I'm from Halifax. =) Representing the east coast.

  • 2 weeks later...
Melusine Newbie
Melusine
Posted

Hi

i'm in Lethbridge, AB. Not sure if its celiac or gluten intollerant or ....??? but gluten free makes me feel so much better! I can sleep. I can eat. I can live!

Pac Apprentice
Pac
Posted

Hi,

I just moved to Dawson City, Yukon. I'm originally from Europe and to be honest, I have hard times adjusting to the canadian-style gluten free diet. :( If anyone of you have time and patience to answer my probably trivial questions, I'd be really grateful.

Have a great day everyone!

Pavla

psawyer Proficient
psawyer
Posted

Hello, Pavla, and welcome to the board.

Living in Dawson City will pose some challenges. It is a lovely place, but is small and somewhat isolated. My wife and I visited in the summer of 1994, well before my gluten-free days. My brother and his wife spent three months in Dawson City in the summer of 2007.

If you are looking for specialty gluten-free items, you will probably need to order them online. But there are lots of mainstream products available in Canada that are gluten-free.

Here is a list of companies/brands that will always clearly disclose gluten if it is present in any of their products:

Arrowhead Mills, Aunt Nelly's, Balance, Baskin Robbins, Ben & Jerry, Bertoli, Betty Crocker, Blue Bunny, Breyers, Campbells, Cascadian Farms, Celestial Seasonings, ConAgra, Country Crock, Edy's, General Mills, Good Humor, Green Giant, Haagen Daz, Hellman's, Hormel, Hungry Jack, Jiffy, Knorr, Kozy Shack, Kraft, Lawry's, Libby's, Lipton, Martha White, Maxwell House, McCormick, Nabisco, Nestle, Old El Paso, Ortega, Pillsbury, Popsicle, Post, Progresso, Ragu, Russell Stover, Seneca Foods, Skippy, Zatarain's.

The list does not include every brand sold by the listed companies, but look closely at the label for the name of a large company such as Kraft or Unilever. Their brands can be trusted even if they are not on my list.

Soft drinks made by Pepsi and Coca-Cola are all gluten-free. Caramel colour in North America is safe, as is maltodextrin.

VH sauces are a ConAgra brand, and are only sold in Canada. Most (but not all) are gluten-free, and in particular, their soy sauce is widely sold in Canada and is gluten-free.

I've given you a start, but you will have many more questions. Ask away, we are all here to support you. :)

canadianalli Newbie
canadianalli
Posted

didnt see anyone from Saskatchewan, but i am! straight from saskatoon!

Pac Apprentice
Pac
Posted

Hello Peter,

and thanks for your warm welcome.

If you visited Tasty Byte Internet caffe while in Dawson, you might even know me. I was working there in summer 2007. Plus I was goldpanning for the Czech team, (still have the gold). :-)

The list of companies is exactly what I needed, thank you a lot. As for the specialty gluten-free products, I haven't found any breakfast cereals or biscuits, but I can't eat any starchy or too sweet stuff anyway, so it doesn't really bother me. For those celiacs who want to come here, there are gluten-free tortillas, puffed-rice bread, spaghetti and lots of flours - all purpose, corn bread, muffins, pancakes, chocolate cake from Red Mill company.

I still have two more questions. First one - are there any gluten-free beef jerky you can recommend? I've seen some that don't have any gluten in their ingredients list, but just don't know if I can trust them. The second is not related to gluten-free diet. I tried to find sour cream and cottage cheese that are made from milk only but I had no luck so far, all of them contain at least corn starch and guar gum. Should I search more or is this just the "purest" form I can get in Canada? I honestly don't know.

Well, need to go back to work. Hope you have a great day.

Pavla

Hello, Pavla, and welcome to the board.

Living in Dawson City will pose some challenges. It is a lovely place, but is small and somewhat isolated. My wife and I visited in the summer of 1994, well before my gluten-free days. My brother and his wife spent three months in Dawson City in the summer of 2007.

If you are looking for specialty gluten-free items, you will probably need to order them online. But there are lots of mainstream products available in Canada that are gluten-free.

Here is a list of companies/brands that will always clearly disclose gluten if it is present in any of their products:

Arrowhead Mills, Aunt Nelly's, Balance, Baskin Robbins, Ben & Jerry, Bertoli, Betty Crocker, Blue Bunny, Breyers, Campbells, Cascadian Farms, Celestial Seasonings, ConAgra, Country Crock, Edy's, General Mills, Good Humor, Green Giant, Haagen Daz, Hellman's, Hormel, Hungry Jack, Jiffy, Knorr, Kozy Shack, Kraft, Lawry's, Libby's, Lipton, Martha White, Maxwell House, McCormick, Nabisco, Nestle, Old El Paso, Ortega, Pillsbury, Popsicle, Post, Progresso, Ragu, Russell Stover, Seneca Foods, Skippy, Zatarain's.

The list does not include every brand sold by the listed companies, but look closely at the label for the name of a large company such as Kraft or Unilever. Their brands can be trusted even if they are not on my list.

Soft drinks made by Pepsi and Coca-Cola are all gluten-free. Caramel colour in North America is safe, as is maltodextrin.

VH sauces are a ConAgra brand, and are only sold in Canada. Most (but not all) are gluten-free, and in particular, their soy sauce is widely sold in Canada and is gluten-free.

I've given you a start, but you will have many more questions. Ask away, we are all here to support you. :)

dnwiebe Newbie
dnwiebe
Posted

Newly diagnosed (May 2009). 20 years old from Edmonton! :D

miloandotis Apprentice
miloandotis
Posted

HI, I'm from Vancouver Canada, and joined this site today. I got my world turned upsidedown just three days ago. I'm also blessed with a severe, severe dairy allergy, eggs, and sunflower seeds, just to name the most severe.

In the past three days I've come to understand that my carefree eating will now be very, very changed. Thank god I can have coffee still!!!!!!

I too will have a bunch of questions that will probably be repeats...like...I'm already confused...cornstarch is out as well? hmmm...is there a list of foods to avoid on here somwhere?

I think I'm very lucky. I live in a large city, so access to special diet items may be easier....and I work in a clinic with many fabulous professionals with great advice and experience with this. I guess life could be worse. lol

Anyone know how long it takes to start feeling relief from symptoms?

miloandotis Apprentice
miloandotis
Posted

opps double post...this forum and I are not getting along yet...sorry

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    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      Are Lindt chocolate balls gluten free?

      By trents · Posted

      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
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