kschmitz

Hello,

I have not been on the message board lately, and was so glad to see posts about St. Louis restaurants. There are two other restaurant chains that have a gluten-free menus. The first is Carrabba's Italian Grill in O'Fallon and Creve Coeur and the other is Mimi's Cafe in Chestefield. I have not have any problems eating at these places.

celiac3270, what would we do without you!!?? 

Could you send a copy of the restaurant file to

verber57@midrivers.com

Thanks, you are an angel!

bambam

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Please send copies of both lists to

kschmit@swbell.net

Thank you sooooooo much!

K

celiac3270, what would we do without you!!?? 

Could you send a copy of the restaurant file to

verber57@midrivers.com

Thanks, you are an angel!

bambam

<{POST_SNAPBACK}>

I am a life-long, active Catholic. I was dx with celiac 5 months ago. I completely understand the frustration concerning the seeming inflexibility of the Catholic Church regarding wheat-only communion wafers. I would like to share with you my personal experience with this issue.

When I met with my parish priests about receiving communion, they were very compassionate and helpful, even consulting with several religious convents that make low gluten wafers. However, since I attend daily Mass, I did not want to ingest even a small portion of a gluten-free wafer. So I decided to receive only the wine, which according to Church teaching is called transubstantiation and which I believe, is also changed into the Body and Blood of Christ. The substance of both the bread and wine are changed into the real Body, Blood, Soul, and Divinity of Jesus Christ.

In addition to the support of the priests, one of the deacons of my parish researched celiac disease and wrote an essay that was inserted in our weekly bulletin explaining the disease and why I would no longer be receiving communion under both species. This essay not only helped with my initial discomfort of other parisioners asking why I was not receiving the host, but also helped to educate our parish community about celiac disease. Recently, at a fund-raising bake sale, one of the ladies of our parish baked gluten-free chocolate chip cookies!

As you can see, I have been blessed with a loving and supportive Catholic community. I hope and pray that all celiacs who are struggling with this sensitive communion issue will be able to find a respectful resolution as I have.

kschmitz

Questions:

1. sex: Female

2. age: 56

3. ethnic group: Caucasian

4. age at which you were diagnosed: 56

5. How did you feel when you were diagnosed? Complete surprise, since no one else in my extended family had ever had this dx.

6. Did you have health problems in childhood? No

7. How well do you maintain a gluten-free diet?

_X_ I absolutely never eat gluten

__ I very rarely eat gluten that I know of

__ I try not to eat gluten but I sometimes cheat or don't know

__ I don't maintain a gluten-free diet as well as I should

__ I don't maintain a gluten-free diet at all

8. What are some of the main difficulties you face in maintaining a gluten-free diet?

__ Price of gluten-free food

__ Availability of gluten-free food

_X_ Taste of gluten-free food

_X_ Preparation of gluten-free food

__ Public awareness of gluten intolerance/celiac disease

__ Knowing and understanding what foods you can and cannot eat

__ Reading and memorizing labeling on foods

_X_ Dining out

_X_ Traveling

__ Other:

9. What type of symptoms do you face when gluten is ingested?

__ nausea/vomiting

__ diarrhoea

__ mouth ulcers

_X_ stomach pains

_X_ fatigue/tiredness

__X other(s) : Weight Loss

10. How comfortable are you eating in restaurants or public situations?

__ Very comfortable: I have no problem at all

__ Comfortable: It's not too much of a problem or embarassment for me

_X_ Slightly uncomfortable: I sometimes feel it a hassle or embarassing to ask about or identify gluten-free food

__ Uncomfortable: I often feel it a hassle or embarassing to ask about or identify gluten-free food

__ Very uncomfortable: I avoid dining in public situations if at all possible

11. If you ever do feel uncomfortable, where and why exactly does this usually happen? I am uncomfortable because even if people think they are providing gluten-free food, they do not understand at all the dangers of cross-contamination. It is easier for me to bring my own food then try to explain all the issues.

12. How do you deal with situations in which you must dine out?

__ Don't eat

__ Only eat what you know or can assume is gluten free

__ Eat what they have out of politeness, even if it may contain gluten

_X_ Ask for a gluten free dish

__X Other : Bring my own food.

13. In most restaurants, do you find that waiters/waitresses/managers/cooks are aware and accomodating to gluten free requests? Absolutely not.

14. If a device were available that allowed you to test you food for gluten in public situations, would you use it? Yes

15. What are some features it would need or you would like it to have? (for example: size, accuracy, speed, etc.) Size and weight - to easily fit in a purse or pocket; accuracy - 100% accuracy, because the smallest % of gluten affects me; speed - 60 seconds or less.

16. What aspects might make you refrain from using it? If it was not 100% accurate.

17. About how much would you be willing to spend on a device like this? If it was a one time only cost, up to $100.

18. Would you be willing to participate in later product testing and further interviewing as this project develops? Yes, I would.

Thank you, Red 345, for your response. Unfortunately, I am not taking any new medications that could possibly account for the petechiae. My doctor and I are in the process of trying to find another cause - viral or bacterial infection, autoimmune difficulties, etc. However, since being diagnosed with celiac disease, I think that every medical problem I have is somehow related to it, because most are.

Thanks again for your post.

ks

I was diagnosed with celiac disease in August and have been managing well with the information and support from this forum. Recently, I have also been diagnosed with petechiae - which is superficial bleeding into the skin, usually on the legs - caused by low blood platelets. Have any of you ever had this diagnosis? Low platelets can be the result of an autoimmune problem, so I was wondering if petechiae could be another disorder from celiac.

Thank you.

ks

I, too am so thankful for this message board. Since I was diagnosed in September, I have learned more from all of you than from my doctor and dietician. I also try to visit the board every evening after work, and although I don't often post, I read every new message. Your names have become so familiar to me, and I feel such a connection to everyone. Thanks to Scott and to all of you who are willing to share so much of yourselves.

ks

I had a history of anemia, GERD, low thyroid function, early onset osteoporosis, bloating, gas, constant fatigue, etc. After experiencing unexplained weight loss, my internist referred me to a gastroenterologist, who after looking at my history, ordered the blood tests for celiac disease. The tests were positive, and with my other medical history, my doctor said that a biopsy was not necessary to diagnose me with celiac disease. My doctor also said that the "best test" is improvement from symptoms with the gluten free diet. If your symptoms are diminishing and you are feeling better, why would you need to have any more tests?

My sister, who was diagnosed with Type 1 diabetes and IBS about ten years ago, had the blood tests for celiac disease after my tests were positive. She also tested positive. She is encouraging her two daughters and their children to be tested.

My daughter, who had dh-like symptoms from age 12 until 19, also had the blood tests recently and was IgG positive only. She is now having her daughters checked.

I can't talk my son into having the tests, but he is soon to be a new father, and I think he will probably come to terms with the possibility of having celiac disease, especially since so many of our family are showing positive test results.

ks

I'm from St. Louis, Mo. Go Cards!!!!

ks

Didn't see "Milkduds" on the yes or no list. Does anyone know if this candy is gluten-free?

Thanks!!

ks

Thank you so much for trying the foil on your grill. I'll be waiting for your response as to the results you got.

ks

Hello,

I am recently diagnosed with celiac disease and am new to this forum. I am also very concerned about eating out. A dietician I contacted recomended bringing aluminum foil whenever eating out and asking that my meat/fish be grilled on the foil. Has anyone tried this before?

ks

Hi,

I am also new to this forum and appreciate all your experienced advice. RE: eating out - a dietician I contacted suggested taking aluminum foil to resturants and asking the chef to grill meat/fish on the foil. Has anyone tried this?

ks

Hi,

Whole Foods Markets carry a house brand of supplements called 365 that are free of wheat, gluten corn, yeast, fish, egg, dairy and lactose, no artificial colors, flavors or preservatives. I started taking the multi-vitamin, calcium and glucosamine & chondroitin for my osteoporosis, and vitamin E. I recently discovered that the iron supplement that I was taking for my anemia contains gluten - Feosol. So now I take Slo-Fe. I also must take several prescription drugs for conditions caused by celiac disease - GERD, low thyroid function. Fortunately, the medications are gluten free. Hopefully, now gluten-free for two weeks, my intestines will heal and the rest of my body will return to better health.

ks

Thank you for all of your kind responses. It is such a comfort to know that someone understands what I am going through. I have a loving, supportive family. However, they do not understand what they call my "obsession" to seek out and eliminate gluten from my life. They roll their eyes when I talk of cross contamination, labeling, and all of the other new vocabulary that I am still learning. So please keep posting, everyone, because this forum is a lifeline.

Thank you for all of your kind responses. It is such a comfort to know that someone understands what I am going through. I have a loving, supportive family. However, they do not understand what they call my "obsession" to seek out and eliminate gluten from my life. They roll their eyes when I talk of cross contamination, labeling, and all of the other new vocabulary that I am still learning. So please keep posting, everyone, because this forum is a lifeline.

Hi, I have recently been diagnosed with celiac disease. I have been treated for various symptoms for years, anemia, GERD, early onset osteoporosis, low thyroid, etc; but finally know the source of these problems. Unfortunately, I have been given very little help for managing a gluten free life. I started with a hospital dietician who knew less than I have learned from forums like this. In addition, I asked my pharmacists about the prescriptions and over the counter medications that I must take, and they had no answers for me. I e-mailed several pharmaceutical companies about their products and have received no replies. Please help!! I am severly anemic and need an iron supplement. Can you recommend a gluten free one? What about a calcium and Vitamin D supplement? Is Viactive ok? What about a multivitamin? Where can I find out information about prescription medicines - Nexium, Levoxyl, Fosomax? Thank you.