Hi Susan's Mum,
Every Woolworths / Safeway shop in Australia has a large red plastic covered folder called the "Nutritional Information Folder". One copy is located in the deli. The other in the Manager's office. It is updated regularly (I think around once a week) and comes under their QA system.
It lists all the products that do not arrive in the shop already labeled, and lists all the nutritional information, ingredients lists, and MANDATORY WARNINGS about allergens including products or manufacturing aids derived from wheat, rye, barley, or oats.
All you have to do is ask to see the folder, they even provide note-paper in the front for you to make your own notes. If you have difficulty finding your way around it ask the staff to help you.
A few things to ask about to get you used to using the folder.
Hash Browns, Potato Gems. One contains no Gluten, the other does not.
Having said all this, the weakest link in the chain is the cross contamination that occurs when they slice the product in the shop. Also Hash Browns and Potato Gems are often on adjacent trays, so the crumbs from one may contaminate the other.
Because of these problems I usually stick to Pre-Packaged deli items like Hans smallgoods most of which are clearly labeled "Gluten Free". Their range is increasing all the time.
This is a great set of Slides
I am burning some celiac disease-ROMs to give to doctors in my area, and also to my dentist. My dentist is very skeptical that celiac disease has anything to do with dental enamel defects.
If your Doctor is not convinced about the incidence of celiac disease compared with other conditions, get him/her to have a look at:
Except one word in the last paragraph should be corrected!!
For "Most" please read "Some"
also, an American Site listing the tests is at:
And an Australian page listing the tests is at:
All good info when you doctor needs a little information.
Until recently many medical schools taught that Coeliac was such ar rare disease that a doctor may only see a few cases in a lifetime.
Why, armed with information, would they waste their time looking for it? Only people with the very worst symptoms would be diagnosed, and then, only after every other avenue had been exhausted.
Now SOME doctors are becoming more coeliac aware. When they hear words like, oesteoporosis, anemia, miscarriage, etc, one of the first things they think of is "Coeliac". It is easy to test for, and they can easily rule it in or out as the culpret.
We should all be doing everything in our power to educate doctors. Invite them to your support group meetings. When they see a room full of coeliacs it may change their thinking.
When you have a large number of people a a celiac function, make sure it gets written up in the local press, with a photo.
Keep yourself up to date with the medical journal articles you can access on the internet. Discuss them with your doctor. eg. "I just read this article about most coeliacs being obese when they are diagnosed." etc.
[I]The point I am trying to make is this: Every 1 in 133 Americans has Celiac but the number of people that are actually diagnosed with Celiac is far different (not sure what and it was in the article I read about this blood bank study, closer to 1 in 400 maybe). So that's why awareness has to be raised because there are tons of people walking around with it and they don't know. (like most of us did)
One of the studies that came up with the 1:133 is at:
Based on this figure ANZCRF* in their recent newsletter say that over two million Americans remain undiagnosed. What a market for the gluten-free manufacturers!
I do not think the newsletter is on their website. I have a hard copy of it.
Interesting facts from this newsletter, which I have posted previously, are:
1:2 Coeliacs from Finland have been diagnosed.
1:8 Coeliacs from Australia have been Diagnosed.
1:20 Coeliacs from USA have been Diagnosed.
I believe it is very easy to purchase gluten free items in Finland.
If the 1:133 & 1:20 figures are used as the basis of the calculation this would mean that around 1:2660 Americans have already been diagnosed
I have found different doctors require different methods of approach.
Often I just approach the receptionist and ask if I can leave Coeliac Society pamphlets in their pamphlet racks. 90% of the time they give the OK. Other times they say they will have to check with the doctor, which is a golden opportunity for me to say "Can I ask him?". Once you see the doctor, they either know all about celiac disease, in which case they are happy to have the pamphlets, or they are a bit embarrassed that they do not know, in which case you can arrange to get more info for them. In one case the doctor had no coeliac patients and so required no pamphlets. I have kept revisiting him over the years, and the last time he said celiac disease was much more prevalent than he previously thought. I hope he is diagnosing a few himself.
I usually carry copies of articles on coeliac disease preferably from medical journals or medical organisations, that I can give to them if appropriate.
I visit most of the medical centres in my area once or twice a year on my way home from work, dressed in my dirty work clothes! Some may dismiss my advice because of the way I dress, the first they see me, but once they do get to know me they do respect it. I do this mainly to ensure that they do not think I am a medically trained person. My aim is to try to get them to read current medical journals on the disease.
Everyone needs to develop their own techniques for coeliac awareness. What works for one person doesn't work for another.
I have just read the last four posts in this forum. Makes me very happy to see coeliacs out there pushing things along instead of waiting for others to do it. Every seemingly small thing you do, does benefit the coeliac community as a whole.
Talking to food outlets about gluten-free. Even talking to the medical professionals may seem to be a waste of time, but if they hear it from you, then hear it from several other people over time, they may eventually decide it is worth researching it themselves. At this point you have to pray that they read modern information, and do not research old textbooks.
Anyone who promotes coeliac awareness in any way is not only helping others, but also helping themselves, by increasing the demand for gluten-free food, which in turn encourages retailers to increase the range of gluten-free they stock.
My local supermarket brings in several new gluten-free products every month. It gets better all the time.
I am always thankful that if I have to have a chronic, life long disease, I have been given coeliac disease, and not something else!
According to the latest ANZCRF newsletter.
1 half of all Fins with Coeliac Disease have been diagnosed.
1 in every 8 Australians with Coeliac Disease have been diagnosed
1 in every 20 Americans with Coeliac Disease have been diagnosed
In Finland all the Petrol (Gas) stations have gluten free sections!
I think USA is still in the very difficult stage of Coeliac Awareness.
I think Australia has recently entered a much easier phase of coeliac awareness as most people have at least heard about it but may not have considered that they may have it. They know vaguely about it, but do not know any of the detail. Many have friends with it and may have witnessed the improvement in their health.
I think that in the States coeliac awareness is very difficult at the moment, but it is going to get easier. Any awareness you promote now is going to be multiplied many times over the next few years.
It is hard to promote coeliac awareness working alone. Local support groups need to be inspired to carry out projects.
Local newspapers like to carry stories about local people who have been very ill but are now fit and well functioning people. They especially like "warm and fuzzy" stories about children, especially if there is a photo of them playing sport, or taking part in an activity they couldn't take part in before.
There is also a PowerPoint presentation aimed at General Practicioners (Is that what you call them in the US?) at:
This presentation has been used to educate GPs (by professional Gastros) as an introduction to the GESA pamphlet:
I have turned it into a flip chart presentation (printed it in colour 2 sides of the paper, plastic laminated it, and put it in a 4 ring binder. I have loaned this to several doctors who have wanted to learn more.
The have thanked me for the loan. Do not know how effective it was. Something may have been absorbed by them. A couple said they had photocopied it. That is probably a good sign.
The pamphlet I give out to doctors is the GESA one at:
Our coeliac society reprints these. I give them to doctors, and I give them to people with symptoms to give to their doctors.
If you are embarking on a project like this, could you please make it work in metric units as well as the feet, inches, pounds and ounces etc. still being used in the USA! (and use killojoules instead of calories!)
I find grams, litres, millimeters, meters etc a whole lot easier to calculate.
I have posted on a different part of this message board ("Doctors" category), some of the methods I use to educate doctors. I continually visit many of the medical centres around here dopping off "Coeliac Society" pamphlets for their waiting rooms, occasionally put up posters on their notice boards. The rest of it yo can read at:
plus the discussion which follows.
I am always looking for new ways to "spread the word".
Any comments on what I am doing or any other new ideas?