Attended celiac disease Lecture By One Of Canada's Foremost Celiac Gastroenterologist Yesterday...

[love2travel]

The lecture was called "Celiac Disease is NOT a Food Allergy" by Dr. Connie Switzer. Great start!

Topics included the following (I have a handout):

Gluten Sensitive Disorders

Prevalence of Adverse Food Reactions

Spectrum of Adverse Food Reactions

Diagnosis and Outcomes

Features of Food Intolerances

Features of Food Allergy

Definition of Celiac Disease

Real Facts about Celiac Disease

Why is celiac disease Hard to Diagnose?

Physiology of celiac disease

celiac disease Prevalance in "High Risk" Groups

celiac disease in Adults and Children

Atypical Presentations of celiac disease

Canadian Celiac Presentations

Commonest Symptoms and Diagnoses of celiac disease in Canada

Changing Clinical Presentations of Celiac (US)

celiac disease Diagnosis

Who Needs Blood Tests for celiac disease?

Why Bother with a Biopsy?

Treatment of celiac disease

Clinical Response to Gluten Free Diet (Canada)

Reasons to Adhere to GFD

How Difficult is the GFD?

Research into Other Treatments

celiac disease Good News

This was followed by a Q and A. Although I knew most of the information presented, I learned a few new things (new to me, anyway):

- those with celiac disease CANNOT have oats (even certified gluten-free and processed at a dedicated facility) for TWO YEARS after beginning the GFD. She stated the gut MUST heal first. And here I've been eating Glutenfreeda's oatmeals sometimes for breakfast. Doctor said this may not cause damage to the small intestine but create problems with the gut healing process.

- only 39% of all biopsies are done correctly!!! This doctor's key focus is training new med students how to do them properly (she is also a professor). She said MOST only take 3 biopsies when she said it should be at least 8-11.

- average diagnosis times in Canada 12 years! I am so thankful I found out through screening.

- undiagnosed celiac disease 4 times increase in mortality.

- Less than 50% present with GI symptoms. I knew it wasn't terribly high but did not realize it was less than 50%.

- most common symptoms:

- 83% abdominal pain

- 76% diarrhea

- 69% weight loss

- 68% fatigue

- 38% joint pain

- 32% constipation

- 29% nausea

- most common diagnoses:

- 40% anemia

- 31% stress

- 29% IBS

- 15% PUD

- 15% vitamin deficiency

- 13% food allergy

- 9% fatigue

Several gluten-free vendors were set up outside the lecture theatre. They have much to learn because one table had set out all their dips, sauces and so on but with gluten-filled pretzels intermingled with gluten-free crackers! All sorts of issues there. So, I told them about it and they removed the pretzels. Who knows how many people had dipped them into the dips at that point? I imagine all sorts of people could have been seriously ill last night.

As mentioned I do have notes so if I have info that may help just ask (though we are pretty much celiac disease specialists ourselves!).

Have posted this under "Coping With" as well as that is probably more appropriate than here.

[Takala]

Nice writeup.

Did she mention what she thought the prevalence was of gluten intolerant and celiac people in Canada in the general population ?

I would have ratted out the vendor to whatever entity put the event on, with the regular pretzels going off the table and leaving the cc'd sauces out (altho you won't catch me using a public "dipping sauce" for that reason.) That is inexcusable.

[love2travel]

Nice writeup.

Did she mention what she thought the prevalence was of gluten intolerant and celiac people in Canada in the general population ?

I would have ratted out the vendor to whatever entity put the event on, with the regular pretzels going off the table and leaving the cc'd sauces out (altho you won't catch me using a public "dipping sauce" for that reason.) That is inexcusable.

Will look up the numbers after lunch in a few minutes.

I did rat out the GLUTEN LADY table. There was general shock and disgust. The lady felt absolutely awful and looked frightened, too. It was unbelievable. There were many attending who never would have known that the gluten-free pretzels look different than gluten ones. I would be interested to know what happened after (to both her and to the poor souls who got sick).

[love2travel]

Nice writeup.

Did she mention what she thought the prevalence was of gluten intolerant and celiac people in Canada in the general population ?

I would have ratted out the vendor to whatever entity put the event on, with the regular pretzels going off the table and leaving the cc'd sauces out (altho you won't catch me using a public "dipping sauce" for that reason.) That is inexcusable.

In the general population in Canada the prevalence is at least 1-2% but likely more. She said that over 80% remain undiagnosed largely because of the long delays in diagnosis. Waiting lists for such specialists alone can be up to two years. She said that in the US only 5% are diagnosed.

In Canada the mean age at diagnosis is 46 (+/-16) years. For every 3 females diagnosed only 1 male is.

- 37% consulted 2 or more GPs

- 40% consulted 4+ physicians

- 14% consulted 2+ gastroenterologists

- 96% of those on the GFD have experienced vast improvement

More interesting data:

- 90% of Canadians with celiac disease adhere to the GFD BUT it has the following impacts on their lives:

- 94% take gluten-free food when traveling

- 85% have trouble detecting if food is gluten-free

- 83% have trouble finding gluten-free food

- 80% avoid eating out

- 40% avoid travel

- 40% are left out of meal invites

- 30% are afraid of hospital gluten-free food

[Takala]

Well, hopefully in the future, Gluten Pretzel Woman of Doom will be more careful !!! Good catch!

Interesting statistics, was wondering if their (Canadian) population had a higher prevalence because of where their population was originating from, combo of Indigenous and a lot of northern European.

Also there seems to be some pushback coming from the business sector on the need for increased rates of diagnosis (here I am making the assumption that sick people would like to know what is wrong with them so they could stop eating the wrong thing and become healthier, which is a win- win situation for everybody ) when I've read various articles over the past 2 years out of the Wall St Journal, NYT etc with "experts" opining the gluten free diet is a fad that won't help most with the symptoms and then there is what I call the "foodie troll" problem in the general blogosphere, where real people are using fake identities to make "scientific" "expert" statements like "gluten intolerance is a made up disease." See also the recent story here in the publications section of this site "More resistance to the large prevalence of Celiac Disease"

Link to Dr Hoggan's takedown of the research article here https://www.celiac.com/articles/22550/1/More-Resistance-to-the-Large-Prevalence-of-Celiac-Disease/Page1.html

This increase in recognized prevalence is largely the result of studies that are conducted by testing blood from healthy blood donors to determine these numbers (more on this shortly). Yet a recent article from the medical literature asserts that current reports of the prevalence of celiac disease are over-estimating the actual portion of the population that is afflicted by this ailment. This article, published in the Annals of Medicine and Expert Opinion in December of 2010, offers its own estimate the prevalence of celiac disease at about 1 in 160 (2). What are we to believe? Is the rate of celiac disease really overestimated by many of the experts conducting research in this area? Or is there some other explanation?

The researcher was achieving his lower numbers partially by excluding already diagnosed celiacs from his pool because they didn't have blood test reactions now ..... hellooooooo.

I thought that was very relevant to my own situation, as I am sero negative and had also been tested again several years ago with a blood panel, after years off of gluten, and been declared officially "not" celiac for being.... sero negative again.... which I thought was actually funny at the time. (current PCP accepts my interpretation of gluten intolerance after the infamous miss by the neuro about the brain lesions, and the disappearance/lessening of many of the other problems)

There is a tendency for the general population to confuse experts and expert opinions.... in a court of law, the witnesses for either side may hire "professional experts" to give an "expert opinion," it's an actual legal term for a person who is hired and paid to express something, they are not the same as a judge which is supposed to be unbiased and make the decision after being presented with opinions by both sides. I noticed that it was the Annals of Medicine and Expert Opinion, which was the source of the research purporting the incidence was lower.

It's our own pushback that is needed against the endless cycle of the doctors saying the rate of diagnosis is very low, while the patients are getting blown off because the "experts" are saying the rate is actually lower than the "food faddists" (or other derogatory term for layperson) would have one believe - meanwhile the docs seem to be using diagnostic criteria that don't work out well for the actual patients with a gluten intolerance or celiac problem, and the insurance mechanisms seem to be stuck on this sequence of 1. must have successful blood test 2. must have successful biopsy --- or it is not real.

[Bluebee]

love2travel - Where did you see her speak?

[love2travel]

love2travel - Where did you see her speak?

In Alberta.

[butterfl8]

I had the absolute JOY of hearing Shelley Case speak (in the US) about 4 months after my diagnosis, and I must admit, after that, I feel that everywhere other than the US is a bit ( ) more up in the research area than we are! So exciting for you to have gone! Sounds exciting.

-Daisy

[ElseB]

Celiac Disease is NOT a Food Allergy.......I confess, in restaurants I usually say I have a gluten allergy. I figure the word "allergy" is more meaningful than Celiac Disease, and better conveys the seriousness of the disease.