Awareness

[coeliacinfostand]

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:

Open Original Shared Link

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?

Alan

[Guest mlwaller]

Ok Guys, I was diagnosed in January and have just been getting the hang of everything since. Recently I have felt the urge to raise awareness, as I was misdiagnosed for 18 years and inaccurately "tested" for celiac disease three times (including an endoscopy without a single biopsy). So my first plan of action was to write to previous docs. Several of you have mentioned doing this, but my biggest fear is coming off too strong or even rude, and not using the opportunity to open their minds. What can you suggest?

Also I wanted to distribute some pamphlets or information flyers to my local clynic and hospital and wondered if anyone knew a good source to obtain these?

Thanks so much, even though I haven't been active on the boards yet, justing reading all your previous posts has helped me a ton.

Megan

[debmidge]

I go in spurts on this. This is a topic that I am not shy to talk about; it's just the time and place sometimes don't lend themselves to the opportunity.

I purchased the celiac "living a full life" from the offical org and I give them out (sometimes I make editorial comments in the margins or yellow highlighter) ; I leave them in all waiting rooms of the medical variety (dentist, primary doctor, ob/gyn, x-ray lab, blood lab etc. ) and hair salon too. Sometimes I put a label on it with a typed note "DO NOT THROW AWAY - WAITING ROOM COPY" as these booklets are .50 each and can get pricey if I have to keep replacing the copy.

I've given them to the local Girl Scout Leader when they were selling their cookies at a table in front of the local supermarket. Of course the leader didn't know what celiac was and I didn't expect her to; but I certainly introduced her to something new. Maybe they'll make a Girl Scout badge for it! In retrospect, maybe like the person who does the Toastmasters speech, a small talk can be given to boy or girl scouts (I'm sure they run out of speakers and things like that.....).

I also made a one page flyer that I sometimes give out too. I wanted to place the flyiers on windshields of cars at supermarket, but I am afraid that the supermarket might tell me to stop and I'd be humiliated somewhat. Maybe I should do that at a supermarket parking lot where they don't know me......

In our area, at the supermarkets, we always have kids looking for funding for their particular sport/hobby/school prom, etc. They are always out there with a bucket. Most of the time it's the local little cheerleaders or softball teams. I could give them a flyer or booklet when I give them their donation at the door of the supermarket (give booklet to parent to read and ask that in return for donation they take a moment to review my info). Just looking for a creative way to share this info.

A lot of people are amazed when I tell them that 1) it runs in families 2) approx 1 in 133 people have it as per the NIH.

I'd LOVE to write to the main doctor who misdiagnosed my husband in 1994 and pretty much told him that his symptoms were in his head! I've been itching to write to him or better yet his superiors at the large, posh medical group he works for. It's been on my list of "Things to Do" for several months now, but I am so angry that I'm afraid I'll come across with my anger instead of plainly presenting the story and how we came to the celiac disease conclusion. Also, they'd probably respond by saying that my husband came down with celiac disease in 2003 and in their opinion had no signs of it in 1994 (even though the symptoms never changed since 1978!!). This group really bombed when they examined him. No specific blood test for the antibodies, no endoscopy, no colonsopy even! Better yet, I'd LOVE to contact a lawyer if the statute of limitations isn't over!

I'd like to hear from others to know how they spread this "word" around. Maybe some else uses another method that one of us can use too. Let's keep this topic open.

Also, I have told non-celiacs to come to this forum just to read it (not to join) and read the "Coping" section and the pre and post diagnosis and see what people with celiac feel, experience, etc.

[jenvan]

hey all-- I saw some of you were asking about ways to approach drs, so i am posting the text from one of the doctor letters I'm sending out-in case someone wants to use it as an example for their own. My philosophy is that the letter needs to be somewhat concise, and "kind." Even if I am angry at my drs for missing my diagnosis or frustrated with them, if anger or resentment comes through in my letter, they will disregard it. And as we know, many doctors have a fair amount of pride in their knowledge base, so I think a somewhat "humble" approach in feel might help catch some of them off guard. I'll let you know what I hear--am going to send them out this weekend!

Dear Dr. Stout,

I am a past patient of yours, and I am writing in reference to my recent diagnosis which I think will be of interest to you. In February of this year, I was diagnosed with Celiac Disease. This came as shock to many, including my physician who thought my many health issues were IBS and sleep related. I have had several health issues for about 15 years, but because Celiac Disease is still thought of as rare and my symptoms did not fit the original paradigm of the disease, no one ever thought to test me.

I am writing to humbly ask you to examine your paradigm of Celiac Disease. Statistics show that as many as 1 in 133 people have Celiac Disease, and that now a majority of those individuals are overweight and have diabetes. I experienced no weight loss or diarrhea, but anemia, IBS, fibromyalgia and chronic constipation. More than half of individuals with Celiac experience no symptoms at all.

I have included some Celiac fact sheets from the University of Chicago’s Celiac Center. I hope you will look them over for any new information and seriously consider making them available for patients to read in your office.

I believe doctors like you are a critical piece in the increased education and of course, diagnosis of Celiac disease. Others like myself need your wisdom and recommendations. Currently, it takes an average of 11 years for a Celiac to receive a diagnosis. This statistic is consistent with my own experience. As a result of the delay in my own diagnosis, I now suffer from chronic muscle pain, reynaud’s and psoriasis. Unfortunately for many, a late diagnosis means a high risk of developing others diseases and lymphoma.

Inevitably, you will meet and diagnosis Celiacs in the future. So, it is helpful for you to know there is an active support group of Celiacs in the Indianapolis area. I encourage you to notify your Celiac patients of the website for information: www.glutenfreeindy.com. This site is a great resource and includes information on the disease itself, different aspects of living a gluten-free lifestyle and how to get connected to a local support group.

I greatly appreciate your time in this matter. I have much respect for your position and know that your level of influence within the community, and the lives of many individuals, is great. If you wish to contact me, please do so at the above information. Thank you.

Sincerely,

[coeliacinfostand]

The pamphlet I give out to doctors is the GESA one at:

Open Original Shared Link

Our coeliac society reprints these. I give them to doctors, and I give them to people with symptoms to give to their doctors.

Alan

[coeliacinfostand]

The wording and pictures from the other pamphlets I hand out is on the site:

Open Original Shared Link

Alan

[Guest mlwaller]

Thanks Guys, Jen, That letter is an excellent example, and Alan, those sources were great. I have already ordered pamphlets for distribution around my area. Tonight I am starting on informative "starter packets" for the local family practice doctors, most of these have become family friends over the years, lol. Planning to start my letters to previous doctors tomorrow. thanks again.

[coeliacinfostand]

There is also a PowerPoint presentation aimed at General Practicioners (Is that what you call them in the US?) at:

Open Original Shared Link

This presentation has been used to educate GPs (by professional Gastros) as an introduction to the GESA pamphlet:

Open Original Shared Link

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.

Alan

[jenvan]

Thanks for the info Alan. I think I'm going to put a brochure together for the doctor letters, rather than the full 8 1/2 x 11 sheets I had originally, which I feel are more likely to be passed aside.

BUT-update on me. Anyone heard of Marsh Supermarkets? They are one of the large midwest chains, and headquartered in Indy. I am meeting with their dietician, head of wellness programs, to discuss carrying more gluten-free products in their stores. I am also hoping to make a pitch for each of us to team up and get a story in the paper. Mutually beneficial--good publicity for Marsh, and great highlight for Celiac too. The timing is great, b/c she has been looking for more gluten-free foods, and trying to figure out how to get the word out to Celiacs. Talk about providence ! I have high hopes

[coeliacinfostand]

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.

Alan

[Jnkmnky]

I've begun dialoguing with Albertson's recently about getting some standard gluten free products on their shelves. They've been so nice and receptive to the idea. They asked for a product list of preferred gluten free items that I had suggested earlier. Can you imagine seeing Kinnikinnick bread, Tinkyada pastas, Foods by George, Envirokidz cereals and more at Albertson's? I'm beginning to invision a world where I don't have to shop at a "specialty" store for bread. OR pay $5-$6 dollars a loaf! While I was on the east coast, I discovered Tinkyada in the REGULAR stores. All of the local stores there had aisles dedicated to "specialty" foods. There was no WholeFoods for 100 miles. I like WholeFoods, don't get me wrong. But I'm not here on this planet to make them rich over a loaf of gluten free bread. For those who are interested in encouraging their local shopping marts to carry quality gluten free products, I would say try it. In my email to Albertson's, I mentioned Wal-Mart's efforts on behalf of the Celiac community and I think that got their attention. I told them that as the awareness of C.D. increases, a new customer base of Celiacs will be looking for a store that supports their needs. It's always best to snag those new customers first. They seem very interested.

[mouse]

  jenvan said:

Good thoughts and good question.  As for myself--I actually have created a 4-fold plan to raise awareness locally where I live.  (yes--I really am a dork!)  I recently sent out letters to restaurants, and plan to send out more as well. 

The next phase I'm entering (I totally sound like a dork!), is writing letters to previous doctors (I've had many of them!), and sending along celiac disease facts sheets as well, in the hopes that they will make Celiac info available out in the lobby/waiting rooms with other health brochures and info.  Doctors are a hard group, harder than restaurants in some ways, because many of them have a great deal of pride in their knowledge base, and using consumer power doesn't work so well with them.  The letter I've written to my doctors tries to use that pride our our advantage--humbly asking them to rethink their paradigm of celiac, and acknowledging that they have great power to influence the community and individuals--and that we need their help.  I kept all my "annoyedness" at doctors to myself (like--years of being misdiagnosed!)

My third goal is to contact local grocery stores, praising for the few gluten-free products they have, discussing strong celiac community locally, asking for more products, and lastly, to try and work with local tv and newpapers to get the word out.  Next week I am meeting with a woman (b/c of work) from WFYI, our public tv station.  I plan on trying her for ideas too.

So far I've had some luck.  One of the restaurants took my thoughts to heart and made several changes to the location I wrote about. 

If these ideas don't produce great results, I plan on bungee jumping from Indy's tallest skyscraper during rush hour for attention, and then throwing stale wonder bread down on people's head.   

Hmmm....  I still want to make myself some kind of fab celiac t-shirt too.  Still working on that one... 

<{POST_SNAPBACK}>

[mouse]

Hi Jen,

If you come up with a cute Celiac T-shirt, please let me know. In Arizona I wear sleeveless in the summer (or cap sleeves) and long sleeve in the winter. And I just don't like the ones that are for sale at Celiac. com. I would wear one of those around the house, but not out and about. And then what good am I doing as far as getting "inquiring minds want to know"? Armetta

[Ruth]

I am writing an article on celiac disease for a regional parent's magazine. My deadline is Monday... should run in Oct or Nov.

I'm writing it as a thrid-party writer (not my own story...but rather reporting the facts and interviewing another celiac family about their story).

The editor was very open to the story idea!

The article is about 1,400 words plus a sidebar on sypmtoms, etc.

When it runs, I'll post the link to the publication.

[coeliacinfostand]

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!

[coeliacinfostand]

  armetta said:

<{POST_SNAPBACK}>

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.

[pixiegirl]

I just wanted to add this, in the beginning of this thread someone asked, if every 1 in 133 people has Celiac why isn't it more well known.

If I understand this correctly, this figure was derived from testing done at various blood banks (in think in the Carolina region, not sure about this bit), when people came to donate blood they asked them if they could run a test for Celiac and that 1 in 133 number are the results of that study. I'm not trying to question its legitimacy, from what I read it was scientifically done by a major Univ.

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)

My doctor told me that I did NOT have celiac, I'm going to use that letter and send it along with Celiac info to him. I changed to another doctor but he is still my mothers doctor and told her she doesn't have Celiac either, not she is not officially diagnosed but she is gluten-free and all her symptoms have gone away since going gluten-free. Just as an aside... my new doctor was born and educated in Spain and she knows all about Celiac.

Susan

[coeliacinfostand]

[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:

Open Original Shared Link

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.

*

Open Original Shared Link

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

Alan

[coeliacinfostand]

If your Doctor is not convinced about the incidence of celiac disease compared with other conditions, get him/her to have a look at:

Open Original Shared Link

Except one word in the last paragraph should be corrected!!

For "Most" please read "Some"

also, an American Site listing the tests is at:

Open Original Shared Link

And an Australian page listing the tests is at:

Open Original Shared Link

All good info when you doctor needs a little information.

[gf4life]

What do I do to promote awareness??

Well, I am a big mouth and I talk about Celiac/gluten intolerance to ANYONE who wants to listen. I swear, I've met more people at Whole Foods who need information about gluten free foods than anyone in my entier town! I don't talk about it to people who are not interested, it is a waste of time. I also pass out information to anyone who wants it, as well as web sites, restaurant info, food lists, etc...

My son Ben (Teku on this site) has a "master plan". He comes up to me one day and says that his master plan is to get a job at McDonald's (hey, he's ten) and buy himself a Toyota Celia. I said to him, "you mean a Toyota Celica?" and he says yeah. I thought for a second and said that if you switched the last two letters around you would have a car that said "Celiac". He thought that was so cool and now he plans to do that. How is that for promoting awareness! Do you know how many people would see that on his car and ask about it, or even just think about the word and then have to go look it up! Maybe we should get Toyota to make a bunch of them and they could be like our flagship.

God bless,

Mariann

[GFManiac]

I LOVE the Toyota Celiac idea!

JEN - Do you have a copy of the letter you sent to your local restaurants? Your letter to your doctor was great!

[elonwy]

Sofar, I write alot of emails. And made alot of phone calls. Currently its to manufacturors, asking about produts, asking them if they can make product lists, blah, blah. It's for me trying to figure out if I can have thier stuff or not, but I figure, the more people contact them, the more they'll want to do something to help us. Maybe.

I talk to everyone I work with and come in contact with who will sit still and listen for ten seconds. Which is quite a few people sofar. A couple of my freinds/aquaintances are getting tested based on similar experience and my mom got one of the first ever blood tests for Celiac in Hilo, Hawaii. ( the doctor had to look it up, then the lab had to look it up, then someone else had to look it up, took three days just to send out the test, and still don't have the results yet, as they had to send it here somewhere).

I bought a whole bunch of Celiac awareness bracelets ( the green ones like livestrong) and have at least ten people who are gonna wear em.

On another thread it was suggested that I make a documentary about Celiac. That's now percolating in my head, but no-one get too excited, cause it takes a long time to get movies made when you've got no money, and I've got a thriller/horror narrative to get through first .

It's kinda like recycling. If we each do our little part, it'll get better.

Oh, and I got some doctor letters to write, I'm just waiting til I'm not SOOO pissed off.

Elonwy

[jenvan]

GFManiac- I have put 2 of the letters I sent out to restaurants below. One was to PF Changs for the gluten-free menu and the other was to Ted's for issues with their menu... Hope the ideas help!

To Whom It May Concern:

I am writing in regards to your restaurant and specifically your locations in Indianapolis, Indiana. I was diagnosed with Celiac disease this year, which means I can not ingest any food or ingredients derived from wheat, barley, rye or oats. My condition is serious and I have to be concerned with issues of cross contamination in even minute quantities. Needless to say, eating in a restaurant can be a stressful time for me, and I am often reluctant to do so.

Before my diagnosis, P.F. Chang’s was a favorite restaurant for my husband and I. You can imagine how thrilled I was after learning Chang’s also had a gluten-free menu. We have eaten there several times since my diagnosis and each time the service, and my food has been excellent. I especially appreciated the visit where the manager brought me my menu and assured me the kitchen staff double checks for issues of contamination during meal preparation. I do not take for granted the times when I can eat a meal and enjoy, not worry about if what I am eating is safe for me.

One in 133 people have Celiac disease, so in choosing to offer gluten-free dishes or menus, you are creating a loyal clientele. Because of my experiences, and because P.F. Chang’s takes an interest in those with restricted diets, myself and my family will continue to frequent Chang’s. I will continue to spread the word of my experience to others, but I know countless Celiacs across the country already choose your restaurant.

Thank you once more for your awareness of issues like gluten-free dining and your desire to accommodate those of us on restricted diets. We are grateful for companies and restaurants such as yours!

Sincerely,

________________

To Whom It May Concern:

I am writing to comment on my experiences dining at Ted’s, specifically the restaurant located in Carmel/Westfield, Indiana.

I was diagnosed with Celiac disease this year, which means I can not ingest any food or ingredients derived from wheat, barley, rye or oats. My condition is serious and I have to be concerned with issues of cross contamination in even minute quantities. Needless to say, eating in a restaurant can be a stressful time for me, and I am often reluctant to do so.

I was made aware by other Celiacs that Ted’s offered a gluten-free menu. I visited your website and was overjoyed to see that Ted’s was aware of those on a gluten-free diet and interested in trying to accommodate them. Your restaurant was one of the first I visited after my diagnosis. Unfortunately, I was not expecting the complete lack of awareness I received upon my arrival. My server, the server trainer and the local manager were all clueless as to the gluten-free guidelines and items I was asking about. One employee tried to convince me that everything on the menu was gluten-free. Luckily, I knew that was not possible. It is my understanding that another manager was contacted and he was able to retrieve the menu off of the website. This process took a long time and the apparent lack of education throughout the restaurant staff justifiably lowered the confidence I had previously had in the restaurant’s ability to provide a safe meal for me.

When we finally did receive our meals the quality of the food was excellent, (I had a plain Bison burger with steamed vegetables and a potato) and so we decided to try Ted’s again. However, on our second visit to the restaurant we were forced to go through the process of our first visit all over again. My husband and I had assumed that after an issue over the gluten-free menu had occurred once, the managers would respond appropriately and educate their servers and staff on the menu—and its existence! However, we were mistaken, and went through a similar experience as our first visit. It took us over an hour to work through the menu with the staff and receive our entrees. Even though the food has always been excellent, it is hard for me to return, wondering if anyone will be informed of the menu plainly offered on the website or of the appropriate protocol for preparing a safe gluten-free meal in the kitchen.

One in 133 people have Celiac disease, so in choosing to offer gluten-free dishes or menus, you are creating a loyal clientele. However, if your employees are not educated, the menu becomes useless. I write to ask that you would properly educate and train your servers, managers and all other employees so that the countless Celiacs across the country can trust Ted’s for a safe, smooth and enjoyable meal. I also ask that each Ted’s location keep a printed copy of the gluten-free menu guidelines accessible to customers. If a customer is required to bring the menu with them, rather than Ted’s providing it, visiting is far less appealing and those with restrictions do not feel welcome. Individuals such as myself with restricted diets are grateful for the restaurants who try to provide a meal we can safely eat. Thank you for your attention and care in this matter.

Sincerely,

[coeliacinfostand]

Jen

Keep us posted!

Alan

  jenvan said:

GFManiac-  I have put 2 of the letters I sent out to restaurants below.  One was to PF Changs for the gluten-free menu and the other was to Ted's for issues with their menu...  Hope the ideas help!

To Whom It May Concern:

I am writing in regards to your restaurant and specifically your locations in Indianapolis, Indiana.  I was diagnosed with Celiac disease this year, which means I can not ingest any food or ingredients derived from wheat, barley, rye or oats.  My condition is serious and I have to be concerned with issues of cross contamination in even minute quantities.  Needless to say, eating in a restaurant can be a stressful time for me, and I am often reluctant to do so.

Before my diagnosis, P.F. Chang’s was a favorite restaurant for my husband and I.  You can imagine how thrilled I was after learning Chang’s also had a gluten-free menu.  We have eaten there several times since my diagnosis and each time the service, and my food has been excellent.  I especially appreciated the visit where the manager brought me my menu and assured me the kitchen staff double checks for issues of contamination during meal preparation.  I do not take for granted the times when I can eat a meal and enjoy, not worry about if what I am eating is safe for me.

One in 133 people have Celiac disease, so in choosing to offer gluten-free dishes or menus, you are creating a loyal clientele.  Because of my experiences, and because P.F. Chang’s takes an interest in those with restricted diets, myself and my family will continue to frequent Chang’s.  I will continue to spread the word of my experience to others, but I know countless Celiacs across the country already choose your restaurant.

Thank you once more for your awareness of issues like gluten-free dining and your desire to accommodate those of us on restricted diets.  We are grateful for companies and restaurants such as yours!

Sincerely,

________________

To Whom It May Concern:

I am writing to comment on my experiences dining at Ted’s, specifically the restaurant located in Carmel/Westfield, Indiana. 

I was diagnosed with Celiac disease this year, which means I can not ingest any food or ingredients derived from wheat, barley, rye or oats.  My condition is serious and I have to be concerned with issues of cross contamination in even minute quantities.  Needless to say, eating in a restaurant can be a stressful time for me, and I am often reluctant to do so.

I was made aware by other Celiacs that Ted’s offered a gluten-free menu.  I visited your website and was overjoyed to see that Ted’s was aware of those on a gluten-free diet and interested in trying to accommodate them.  Your restaurant was one of the first I visited after my diagnosis.  Unfortunately, I was not expecting the complete lack of awareness I received upon my arrival.  My server, the server trainer and the local manager were all clueless as to the gluten-free guidelines and items I was asking about.  One employee tried to convince me that everything on the menu was gluten-free.  Luckily, I knew that was not possible.  It is my understanding that another manager was contacted and he was able to retrieve the menu off of the website.  This process took a long time and the apparent lack of education throughout the restaurant staff justifiably lowered the confidence I had previously had in the restaurant’s ability to provide a safe meal for me. 

When we finally did receive our meals the quality of the food was excellent, (I had a plain Bison burger with steamed vegetables and a potato) and so we decided to try Ted’s again.  However, on our second visit to the restaurant we were forced to go through the process of our first visit all over again.  My husband and I had assumed that after an issue over the gluten-free menu had occurred once, the managers would respond appropriately and educate their servers and staff on the menu—and its existence!  However, we were mistaken, and went through a similar experience as our first visit.  It took us over an hour to work through the menu with the staff and receive our entrees.  Even though the food has always been excellent, it is hard for me to return, wondering if anyone will be informed of the menu plainly offered on the website or of the appropriate protocol for preparing a safe gluten-free meal in the kitchen.

One in 133 people have Celiac disease, so in choosing to offer gluten-free dishes or menus, you are creating a loyal clientele.  However, if your employees are not educated, the menu becomes useless.  I write to ask that you would properly educate and train your servers, managers and all other employees so that the countless Celiacs across the country can trust Ted’s for a safe, smooth and enjoyable meal.  I also ask that each Ted’s location keep a printed copy of the gluten-free menu guidelines accessible to customers.  If a customer is required to bring the menu with them, rather than Ted’s providing it, visiting is far less appealing and those with restrictions do not feel welcome.  Individuals such as myself with restricted diets are grateful for the restaurants who try to provide a meal we can safely eat.  Thank you for your attention and care in this matter.

Sincerely,

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[jenvan]

More good news, I am mtg with my contact at Marsh Supermarkets again next week--so far on tap we have: gluten-free resources to give out in store, monthly gluten-free food basket give-a-way, month of october gluten-free food tasting in store, hopefully a newspaper/tv spot. I made another contact with a fellow celiac who is a nurse/dietician who said she will get our info out to the drs/practices in the area, and that is also working on a tv spot herself. We are going to combine our efforst on the publicity. I think we have a great chance of getting a story done. We'll see!