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I was finally diagnosed at age 53 after specifically asking my gastroenterologist to test me for Celiac. After ten years of an IBS diagnosis and feeling crappy even while avoiding trigger foods I had enough. I wasn't a bit surprised at my diagnosis when the biopsy came back positive.
I've now been gluten-free for five years. I really miss Dunkin' Donuts Bavarian Creme!! And at this time of year I miss Pfeffernuesse cookies!!
I also am hypo-thyroid. My doctor is now doing a study on a possible Celiac-Thyroid link. Any others out there with both?
Can you post a link to this? I have *never* heard this. Interersting, but I'd like to see some data on this....
I don't have a link to this. I got the information during Q&A after the lecture.
Dr. Shawker works for the National Institutes of Health in Bethsheda, MD and they are currently doing a study on Celiac. You may want to take a look at their website: http://www.nih.gov/
I found another site http://www.enabling.org/ia/celiac/cel-hla.html#Q2
which discusses the familial odds of developing Celiac, but doesn't specifically mention recessive or dominant tendencies.
I'm going to see if I can get Dr. Shawker to write something for our forum.
Regarding diagnosis of Celiac:
I run the education programs for a major genealogical society. Just coincidentally I had a program at the society on Saturday featuring Thomas Shawker, an MD who discussed DNA & genealogy, including genetic testing and the benefits of tracing your family's health history.
One of the hereditary diseases he discussed was celiac. I asked him lots of questions. Apparently it is a recessive disease - you need to get the genetic defect from BOTH parents in order to develop it. Because full siblings get their genetic make-up from the same two parents if both parents are carriers they have a fifty-fifty chance of having celiac. Even those who don't actually develop the disease are probably carriers. The children of carriers will only get it if the other parent is also a carrier. However, because they get half their genes from the carrier - they also may be carriers.
Another chain restaurant you might try is Thaifoon. I know they're in Salt Lake City and Las Vegas and a few other cities. I haven't seen any in the East.
They have great food and a gluten-free menu!!!
In Firdale Village
9711 Firdale Ave.
Edmonds WA 98020
Kaili's Kitchen has moved (as of Oct. 1st, 2003) and is now open for lunch and dinner. Everything in her kitchen is gluten-free and everything tastes great! For a real worry-free, gluten-free dining out experience, visit Kaili's Kitchen and give your taste buds a treat.
This place is great!!! I was in Washington for a few days and dragged my husband, sister, bro-in-law, niece & nephew, to Kaili's for a meal. It was well worth the drive as EVERYTHING on the menu is gluten-free!!! Including the delicious desserts!!!!!!
Both Kaili and her daughter are Celiacs, so they are well versed in what we can and cannot eat!!!
If you can't get to Kaili's contact her for a list of the foods she will overnight to you!!!
Hi "Cop's Wife"
I had a very similiar situation last summer in Rhode Island (see the string I started "Discrimination").
I wrote a letter to the restaurant and never got a reply, so I wrote to the RI Commission of Human Rights who felt it was an important issue and instigated a suit on my behalf against the restaurant. Unfortunately, according to the ADA regulations no special accommodations or considerations need to be made for dietary restrictions, so the suit was denied.
A substitution of something else that is also on the menu and/or a willingness to leave something off the serving to protect our health is a very small concession for any restaurant to make. It's the difference between being dietary friendly and dietary hostile.
Anyway, give us the address of the restaurant you had your problem with and I will write a letter of complaint, as, I'm sure, many others will.
Restaurants that are so unaccommodating need to be publicized. There are enough of us (especially when you add in our non gluten-free family members who eat out with us) to make an impact on a restaurant's bottom line.
We need to share the replies (or lack thereof) we get back from the restaurants to see what effect our correspondence has on them. Not too many will be as dietary friendly as Outback, but some, I'm sure, will realize they need to be less dietary hostile and will change their policies - if only to allow substitutions when necessary.
Those which refuse to allow any concessions should be placed in a "Hostile Restaurants" list and we should boycott them.
Thank you to everyone for your input. I agree with virtually everything that's been written. I do think that the best way to change things is for people to make noise. That is why my first move was to write to the restaurant and detail what had happened and ask that they be more compassionate. It was only after receiving no response that I moved to step two.
I did not initiate, nor did I have any inclination to sue Cap'n Jack's over their treatment of me. I simply filed a letter of complaint with the Commission for Human Rights in Providence. I fully expected that if they did anything, it would be to contact the restaurant to inform them that a complaint had been made against them. It was the idea of the Commission to file suit against Cap'n Jack's. Perhaps they thought this would be a way to change the status quo to make things more accessible for those of us with dietary restrictions.
As long as the Commission sees fit to bring this suit, I certainly feel it is incumbent upon me to support their efforts - after all they are trying to make life a bit easier for us.
I, too, resent when the government tells us what we should and should not do. As adults we should all be willing to wear seatbelts, not litter, put on our headlights when it's raining, be civil to one another, etc., etc. Unfortunately too many so called adults have little common sense and/or common courtesy, which is why we have so many "DUH" laws. This seems to fall into that catagory. If you can make someone else's life a little easier by making a small concession, why not do it?? Cap'n Jack's has the attitude, "I don't HAVE to make your life any easier, so I not gonna, and you can't make me!" It seems like a very short-sighted way for a service oriented business to operate, but that's their choice.
Because of my current involvement, I don't think I should be encouraging you folks to write of your displeasure to Cap'n Jack's of Wakefield, RI, but I certainly wouldn't discourage it.
My first course of action was to write to the restaurant - Cap'n Jack's of Wakefield, RI - detailing my complaints.
They didn't respond after two months, so I resent the letter and sent a copy to the Commission for Human Rights. That's how this ball got rolling.
I would have expected, since I had eaten at that restaurant several times before my diagnosis, that they would have preferred to keep my business and at least respond with a modicum of civility, but no such luck.
The only communication I received from them was an extremely nasty letter in response to the Commission's notice.
In the three years I've been gluten-free I have never experienced such an uncompromising, intractible establishment.
Why do you suppose then the Commission for Human Rights choose my complaint to go to suit? I would have thought they they would have a pretty good handle on what is and isn't permitted and wouldn't choose something that didn't have a chance of succeeding.
I certainly would not have pressed the issue further than a complaint on my own.
I didn't choose to sue the restaurant. I wrote a letter of complaint to the R.I. Commission for Human Rights in the hope that they would send a letter to the restaurant instructing them to be more sensitive and accommodating. It was the Commission that decided that this would make a good human rights suit and told me my complaint had been selected to go to suit.
My whole argument is that I was asking for a very minimal accommodation, not something that would in any way inconvenience them, and I was denied that.
I am hoping to get an opinion from a R.I. lawyer on this as they came back to me citing a refusal by the court to force a day care to accept a child with a severe food allergy when they said they couldn't guarantee the safety of the child.
It doesn't seem to me that one thing has much to do with the other, but I would really like to get a professional's opinion.
Hi - Can you cite the reference to C.D.'s listing? I got another reply that says it isn't covered:
problems with food do not constitute disabilities under the ADA, which means there is no entitlement to reasonable accommodations.
I just seems to me that people who are in the business of serving the public would want to be as friendly and accommodating as reasonably possible. This restaurant is just driving people away!
Is there a celiac lawyer out there????
I ran into a problem in a restaurant in Rhode Island - they refused to substitute rice or a baked potato for the pasta that came with a chicken dish. After patiently explaining that I cannot ingest wheat products to both the waitress and manager, I was still told their policy was absolutely "No Substitutions" and that nothing could be done for me.
I wound up choosing another, less appetizing selection (which had a fries or baked potato option!!).
I was frustrated and embarassed over this incident and later wrote a letter of complaint to the RI Board of Human Rights. The Board felt my compliant was sufficient for them to initiate a case of discrimination against the restaurant in question.
The restaurant's response to the suit was that they were within their rights in denying me the accommodation of rice or potato instead of pasta!!!!
If there is someone out there who might be willing to take up this gaunlet, I will provide details of the complaint and the (extremely mean-spirited) response.
This restaurant had a ramp for wheelchairs and grab-bars in the bathroom - all I wanted was a potato or rice - WHICH THEY HAD ON THE MENU!!!!!!
I cannot believe that such a small accommodation, due to medical necessity, could be denied. Can anyone help?? I need to respond within the next week or so, so please get back to me as quickly as you can.
Lauren in New Jersey