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    Nassau Cty., NY

  1. THANK YOU VERY VERY MUCH All for the help and suggestions

    As it turns out.. ugh.. we started to run low on the shampoo we were using.. i had tried others in the course of using this and nothing helped.

    I just bought some more- omgs not a single flake!!!

    what did i buy ? A Rusk shampoo and leave in spray on conditioner that is made for coloured hair. but we rinsed it out and her hair is gorgeous.. I tried it to with even better results.. I cant believe it! all that suffering for nothing! I just sent in a letter regarding menactra and will post as soon as i get an answer

    Lynn


  2. I agree that it sounds like psoriasis. T-gel Extra has helped me a lot. I can't say whether or not it's gluten-free, but it doesn't matter to me.

    richard

    Thanks Richard,

    I had tried the T-Gel on her.. it had helped somewhat, but her hair is so fine we could actually see damage happening.. and major amounts of hair breakage after use of 1x a week!.. But thanks for helping..

    Lynn


  3. I used Burt's Bees on my daughter, but... I found out she wasn't rinsing her hair well enough. A lot of what I thought was dandruff was dried shampoo! What we did for a while was to have her mix some baking powder through her hair prior to washing, to soak up the excess oil. Then shampoo for a full 60 seconds and rinse really well.

    If this doesn't help, then you should talk her to a dermatologist. It could be some other problem.

    THANKS THATS WHAT I THOUGHT TOO. BUT EVEN IF I WASH HER HAIR AND LET ME TELL YOU A 15 YO DOESNT WANT THAT.. IT DIDNT HELP ANY EITHER. I GUESS ITS TIME FOR THE DERMO.. I HAVE NEVER SEEN IT SO BAD.. ITS LIKE CHUNKS!...


  4. Sounds like a description of my head, only I have psoriasis. I would take her to a dermatologist for help. All I know is that nothing helps my head, unfortunately. I have white scales like an albino alligator that flake off and fall around me so that I look like a white Pigpen in Peanuts, because I have to scrape them off or they drive me crazy :lol: I have tried all the shampoos, prescription and non-prescription; use a daily preparation (non-oily) from a dermatologist, and they just persist. Sorry to not be more optimistic, but I think a dermatologist should check her out.

    THANKS SO MUCH


  5. HEY DOES ANYBODY KNOW OF gluten-free DANDRUFF SHAMPOOS TO TRY?

    HEAD AND SHOULDERS DID NOT HELP,

    NEITHER DID SELSEN BLUE.

    NIZORAL IS NOT TESTED.

    NEUTROGENA I DONT THINK IS SAFE?? I COULD NOT GET A STRAIGHT ANSWER OUT OF THEM.. THEY TOLD ME TO USE THE DAILY DANDRUFF SHAMPOO AND I HAD THE PHARMACIST READ THE LABEL- TOO SMALL FOR ME GOOD THING I DID BECAUSE IT WAS NOT SAFE WHEAT PROTIENS WAS THE FRIST THING ON THE LIST

    HELP!!!!!!! AND ITS BAD!

    IT IS SO BAD THAT LAST WEEK A TEACHER BETWEEN CLASSES WENT TO THE SCHOOL NURSE AND TOLD HER THEY CALLED HER DOWN TO CK.. THE NURSE EVEN ASKED HER WHY WE WERE NOT TREATING IT AND MY DAUGHTER TOLD HER THAT WE HAVE TRIED MANY THINGS AND THAT NONE ARE HELPING! SO THE SEARCH CONTINUES. AND YES THE NURSE KNOWS THAT MY DAUGHTER IS gluten-free..

    THE TEACHER MUST OF THOUGHT IT WAS BUGS! SHAME ON THEM.. I WAS SO ANGRY.. BUT ITS NOT LITTLE FLAKES- ITS ALMOST LIKE CHUNKS.. MY MUM SAYS IT ALMOST LOOKS LIKE CRADLE CAP- I KNOW USE BABY OIL BUT I CAN NOT COVER HER ENTIRE HEAD WITH BABY OIL!!!

    *SIGHS*

    ANY IDEAS OUT THERE?? PLEASE???????????

    YOU CAN SEND ANSWERS HERE OR MY EMAIL WHICH IS ON MY PAGE

    THANK YOU SO MUCH!


  6. The gastro just told me that some maalox has gluten and to check first. I'm not sure what kind has gluten. I have one in my fridge but it doesn't look like it has gluten either..

    Hi I dont know where I have it, but I could look or you can just go to the site and send a note.. I did and they amswered very quickly... I believe the classic is gluten-free.. but dont take my word// please ck for your self.. i have the respons sitting on my desk in a huge pile that i need to put into my book.. lol.. the stack is getting bigger but not my book i keep all letters in.. lol..

    feeel better.. lynn


  7. Thank you for contacting Chattem, Inc. regarding our product, Kaopectate.

    The Kaopectate liquid contains gluten. The Kaopectate Caplets also

    contain gluten. However, they have been discontinued and are no

    longer available.

    If we can be of further assistance, please write to us at P.O. Box

    2219 , Chattanooga , TN 37409 .

    Here is my response from Chattem, the makers of Kaopectate. I had

    checked www.glutenfreedrugs

    .com, which had it listed as OK. Just a

    reminder to double check info you find on-line directly if you can.


  8. Dear Consumer,

    Thank you for your phone call to Solgar. We appreciate your interest in our products.

    Solgar works to eliminate as many allergens as possible from our products. In regards to your question about gluten, the following lists the Solgar products that DO CONTAIN GLUTEN:

    Cholesterol Support Tablets (UPC 827)

    Brewer's Yeast 7 1/2 Grain Tablets with Vitamin B-12 (UPC 400 and 401)

    Earth Source Multi- Nutrient Tablets (UPC 1027, 1028, 1029 and 1030)

    Earth Source Greens and More Powder (UPC 1024)

    Earth Source Greens and More Tablets (UPC 1072 and 1073)

    Formula VM - 2000 Tablets (UPC 1186, 1187, 1188 and 1189)

    Miller's Bran Tablets 500 mg (UPC 360 and 361)

    Multiple Fiber Formula Vegetable Capsules (UPC 1787)

    Oat Bran Tablets 750 mg (UPC 2035 and 2036)

    Vegetarian Multiple Vegetable Capsules (UPC 2790, 2791 and 2792)

    Selenium Tablets 50 mcg (UPC 2500 and 2501)

    Selenium Tablets 100 mcg (UPC 2520, 2521, 2522)

    Selenium Tablets 200 mcg (UPC 2540, 2541, 2542)

    B-Complex Stress Formula (UPC 1800, 1801, 1802 and 1803)

    GTF Trivalent Chromium Tablets (UPC 1360, 1361 and 1362)

    Wheat Germ Oil Softgels (UPC 3660, 3661)

    Liquid Vitamin E (UPC 1600 and 1601)

    Octacosanol 2000 mcg Vegetable Capsules (UPC 2046 and 2047)

    At this point in time, the other products in Solgar's product line are gluten-free, including Solgar's Kangavites Multivitamin & Mineral Chewable Tablets (1015, 1016, 1018, 1019).

    I hope you find the above information helpful. If you have any further questions, please feel free to contact Solgar Technical Services at 1-877-765-4274.

    Thank you for choosing Solgar for your nutritional needs.

    Very truly yours,

    SOLGAR VITAMIN & HERB


  9. Autoimmune disease trigger possibly found

    >

    > By Euna Lhee

    > Sun reporter

    >

    > July 31 2008

    >

    > Maryland researchers have identified a key receptor in the intestine that

    > can trigger celiac disease, and they hope their findings can be applied to

    > other autoimmune disorders, such as Type 1 diabetes and multiple > sclerosis.

    >

    > The complete article can be viewed at:

    > http://www.baltimoresun.com/entertainment/....hs.celiac31jul

    > 31,0,6130837.story

    >

    > Visit baltimoresun.com at http://www.baltimoresun.com


  10. Hi Lynn,

    Thanks for writing!

    We do not specifically test our products for the presence of gluten, a

    sticky protein found in some grains such as wheat. Gluten may be

    present in products that contain derivatives of wheat, oat, rye, and

    barley. In labeling our products, our company follows the guidelines

    established by the International Nomenclature for Cosmetics Ingredients

    (INCI) process. Therefore, if we use an ingredient derived from a grain

    such as wheat, oat, rye and / or barley, those names will appear on the

    label.

    Example

    One common example is "Hydrolyzed Wheat Protein" If you see this name on

    the label, the material was derived from wheat, so the product may

    contain gluten.

    We recommend that you consult with your physician as to whether your

    exposure to grain derivatives from the use of personal care products

    will cause the symptoms of Celiac-Sprue Disease.

    We hope this information is helpful,

    Your friends at Degree

    mrb


  11. OK ALL SORRY FOR THE CAPS ONCE AGAIN. BUT I DONT HAVE THE CHOICE IN MY FIRE FOX TO MAKE IT LARGER SORRY ALL..

    Lynn,

    Thanks for writing! All seven varieties of our chips have been tested and certified gluten-free, and all are processed on machinery that does not process any items with gluten. We hope you and your daughter enjoy them! (Not sure about the green design on the package


  12. I find cookies are much easier to make successfully than bread. They don't have to rise much if at all, and many different textures can be acceptable.

    About the readability of text, try setting a custom text size in your browser. In Firefox, you select 'Text Size' from the 'View' menu. This will set the size for all sites, not just the board.

    I know others told me about that.. But for some reason I dont have that option and I am using a new puter.and just updated the ff to the newest version..


  13. Hey All Hope every body has been having a great summer. OK we got a RADIO STATION POSTING ON AIR NOW!!!!! READ ON... LYNN

    ----- Original Message -----

    From: Eric Schwartz B-103

    To: XXXXXXXXX

    Sent: Thursday, August 07, 2008 1:14 PM

    Subject: Re: Group email

    Hi All.... I just wanted to give you an update on the Celiac Awareness campaign I have initiated.

    "CARE" (Celiac Awareness Radio Exposure)

    We will be highlighting the entire month of October as "Celiac Awareness Month".. We will schedule a 1 hour PSA program dedicated to Celiac Disease that will air on all 6 radio stations..... We will reach out to Heidi from CNN and ask Dr. Green to come in. If you have any other suggestions as to who we should ask please let me know. I was thinking of possibly asking John from Mama's to give the restaurateur's perspective....I will be recording a commercial today to air on B-103. It will be running a minimum of 20 times per week starting tomorrow 8/8.The commercial copy is a basic spot that I will be voicing and it will be a "tease" to restaurant and store owners asking if they are interested in participating in "OCTOBER IS CELIAC AWARENESS MONTH"... The Restaurant package is almost ready for me to go out and present to various restaurateurs. If you know of any restaurants/stores that you think would be interested in getting exposure please send me contact info... THANKS...

    Eric Schwartz Senior Account Executive

    Long Island Radio Group (WBZO, WKJY, WHLI, WMJC, WRCN, WLVG)

    WBZO (B-103) "Long Island's Greatest Hits" www.b103.com

    234 Airport Plaza Suite #5

    Farmingdale, New York 11735

    631-770-4262

    Fax 631-770-0113

    Cellphone 516-808-6610

    eschwartz@b103.com or eschwartz@liradiogroup.com


  14. The biggest foods for teens seem to be pizza, cookies, breads, and burger buns.

    Pizza is easy--use corn tortillas for the crust. One tortilla can be kinda thin, so either heat it in a frying pan sprayed with PAM over high heat for two minutes each side (so it blisters a little and is firmer, to take the weight of sauce and cheese), or , for a thicker crust, make a kind of sandwich with 2 tortillas and provolone cheese, heat on both sides (again, in frying pan sprayed with PAM), and THEN top with sauce, cheese, and whatever toppings, and cover for a minute or two (still in pan over heat) until the cheese is melted. Or you could shove it under the broiler, but you have to be VERY careful that it doesn't burn--it only takes a minute or two for the cheese to get nice and bubbly, but it scorches about 30 seconds later).

    Cookies and brownies are VERY easy The easiest cookies--1 cup peanut butter, 1 cup brown sugar, 2 eggs, 1 tsp vanilla. That's it. No flour at all. bake at 350 for 8 minutes, just like any other cookie. And you can add chocolate chips, nuts, whatever.

    Brownies are easy, too. Try any of the recipes on this sie, or in any gluten-free cookbook. If you follow the directions carefully, they are almost impossible to mess up.

    For burger buns, use the following recipe in 4-inch round cake pans instead of the 8" pan (the recipe should make 5 or 6):

    1/4 cup flaxmeal

    1/2 cup brown rice flour (preferably superfine grind) (I use Bob


  15. If you want, you can have your daughter email me any time. i'll send you my email, and i'd be happy to talk to her if she wants to.

    becca

    i'm fourteen years old and have had celiac for over a year. i also have another disease called eosinophilic esophagitis, and i have a feeding tube (basically a tube that goes through my nose and puts formula into my stomach) for that. the feeding tube is not for celiac.

    THANKS SO MUCH I WILL AND I ALSO GOT YOUR MAIL. FEEL GOOD GIRL..

    LYNN


  16. #1 There is a teenagers section on this board--that might make her a bit less hesitant, if she knows she can converse with others who can really connect with her.

    #2) If I were in your position, I would make absolutely every effort to make EVERYTHING in your household gluten free and learn to bake really good-tasting gluten-free breads, cakes, cookies, pizzas, etc.

    I realize that's one heckuva tall order. But I know from personal experience that the premade gluten-free stuff tastes like crap. And the homemade stuff tastes every bit as good as gluteny stuff if you get the right recipes (fortunately, all easily available on the internet).

    So when I wanted my kids to go gluten-free, I made gluten-free pasta, pizza, cake, cookies--whatever their favorite foods were. If their friends were having a pizza party, I made pizza for them to bring with them. And I made sure to invite the friends to OUR house for pizza, and served gluten-free pizza, which they gobbled up and demanded more.

    And my boys both realized that when they cheated, they got bad stomachaches and eczema--and they didn't like stomachaches and eczema.

    I know teen-age girls are different, and want to be independent, and like to turn their noses up at their moms. But perhaps if you have her invite her friends over for (gluten-free) pizza (don't tell them that it's gluten-free), after they gobble it up, you can tell them that it's a new recipe you are trying, and talk about celiac disease and the HORRIBLE, life-threatening things it can lead to like cancer. This might be especially effective if anyone in your family has had cancer, or any of the severe autoimmune problems associated with celiac, like diabetes, thyroid disease, rheumatoid arthritis, lupus, MS, etc. Then maybe they will help pressure your daughter to do the right thing when she's not home.

    And the best motivator for a teenage girl, especially if she is normal weight or a little heavy, is to talk about how overweight celiacs lose weight like magic when they go off of gluten. It's not the carbs--it's the GLUTEN!

    (And if she's underweight and unhappy about it, she can gain weight by going off gluten--a gluten-free diet is a weight-normalizing diet!

    DEAR FIDDLE FADDLE

    THANKS SO MUCH FOR ALL UR GREAT INSITE.. AS TO THE CELIACS, SHE HAS PRETTY MUCH GOTTEN OVER THE SHYNESS OF IT.. ALL HER FRIENDS KNOW, AND ALL THE PARENTS MAKE SURE THEY HAVE SAFE FOODS FOR HER TO EAT WHEN THEY KNOW SHE IS COMMING-- HOW GREAT IS THAT-- I WAS VERY SURPRISED.. IF SHE EATS AT THEIR HOUSES EITHER I SEND FOOD OR IF THEY ARE GRILLING-- NONE GLUTEN THEIR GRILLS I WILL JUST SEND HER W/gluten-free ROLLS. SO FAR IN THAT CASE I HAVE BEEN LUCKY.. AS TO CHEATING SHE IS GETTING MUCH BETTER AT TRYING NOT TO I DONT THINK SHE HAS IN A LONG TIME NOW. BUT SHE IS ALSO A NON SYMPOTMATIC. THAT WAS 1 OF THE REASONS WHY IT WAS SO HARD TO GET A DX.. BUT. WE CHANGED SOME FOODS AGAIN IN HER DIET-- STUFF THATS LISTS AS OK AND GOT LETTERS THAT WAS OK, BUT WHEN WE CHANGED 2 THINGS IN 4 MONTHS HER TTG DROPPED 40 MORE POINTS. ONLY 20 TO GO TO A NORMAL LEVEL... THANK GODS/./ AND ACTUALLY WHEN SHE WENT ON A SUDDEN MAJOR GROWTH SPURT IS WHEN WE FINALLY GOT HER DX.. U ROCK.. MAKE EVER THING FRESH.. I WISH I COULD. MAYB WHEN I MOVE I WILL I GOT SOME MIXES THAT I AM GOING TO TRY.. THAT SOUND REALLY GOOD AND EASY.. HOPEFULLY I WONT MESS IT UP LIKE HER FRIENDS BDAY CAKE LAST YEAR. IT WAS HORRIBLE BUT THE KIDS ALL ATE IT ANY WAY UNDERSTANDING THAT IT WAS MY FIRST ATTEMPT AT COOKING SOMETHING gluten-free.. THEN IT GOT CHUCKED.. LOL. ANY WAY ENUF BABBLING FROM ME.. THANKS FOR ALL YOUR GREAT INFO AND HAVE A WONDERFUL SUMMER.. BTW I DID SIGN HER UP SO SHE COULD USE THE TEEN CHAT.. SHE WONT DO IT.. THERE IS NOTHING I CAN DO TO PUSH IT.. BUT I HAD PUT UP A POST THERE AND JUST GOT A RESPONSE FROM A GIRL THE SAME AGE WHO TOLD ME TO HAVE MY DD EMAIL HER.. THAT WOULD BE A GREAT START FOR HERE THERE.. ANY WAY AGAIN THANKS AND GOD BLESS .

    LYN


  17. There is no way in this world I would eat that! Here in the US, they are pushing for a limit of 20 ppm on foods labeled gluten-free. Some think that is too much!

    I wouldn't give it to anywone with Celiac. It just isn't worth it.

    \

    THANKS That is what i figured.. And Australia. they are even stricter than we are I hear.. now, I saw something on your DD#4 i think it was that like the stomach ulcers? I think? my dd had the same thing at 4 bld wk was only 40 at that time. all other tests even biopsy were negative. they gave her rx of not xanex.. oh heck forgot what it was called. she was on it for a year and rescoped and it was cleared up.. also increased her appetite.. good luck and thanks

    lynn


  18. HI ALL THIS IS AN EXCERPT FROM A LETTER I SENT TO SOMEBODY WHO GAVE ME gluten-free CERTIFIED SAMPLES.

    READ ON..

    OMG! i cant believe it i was reading the labels right, and guess what is in some of these products? wheat.. yes. here is how it is listed:

    AND it is the 1st thing on the label list which means that there is the most of it in the product:

    SPECIALLY FORMULATED WHEAT STARCH* THEN AT THE BOTTOM IT SAYS- CONTAINS LESS THAN 200 PPM (0.02%) GLUTEN, WHICH IS CERTIFIED AS SAFE FOR CELIACS ACCORDING TO THE EUROPEAN UNION CODEX STANDARD..

    WOULD YOU GIVE THIS TO *****? NOT BEING MEAN. JUST A QUESTION.. THIS STUFF IS IMPORTED FROM NORWAY, DIST. BY A COMPANY IN IOWA..

    SO WHAT DO YOU ALL THINK?? WOULD YOU? I DONT KNOW IF I WANT TO TRY IT OR NOT.. MY DAUGHTER IS A NON SYMPTOMATIC.. ADVICE PLEASE..

    THANKS AGAIN ALL

    LYNN


  19. You are welcome to come by and ask questions or post anytime. You don't have to be the one with celiac disease. We have many family members who come on from time to time.

    Thanks.. I have been doing so.. THIS place saved my sanity when my daughter got dx'd last year..

    lynn


  20. Hi Lynn,

    I guess the best thing you can do is leave the log in information available and just walk away. I compare teenagers (having had two myself) to my Jack Russell...they want to do it, but they want to do it on THEIR terms. :rolleyes:

    Good luck and good to see you again.

    Thanks.. I did just that.. put in the note at the site and see if any of the kids will respond with ideas.

    thank.. i know i havent been here much lately.. so much going on school trip graduation, grad party away from school summer program now where she is now CIT in the am and takes classes in the afternoon.. ihave to come back more often. i miss u guys.

    xxx for the help

    lynn


  21. HI ALL I FOUND THIS INTERESTING.. I GOT IT FROM MY ROCK LEADER.. EXCEPT I DIDNT KNOW WHERE TO POST IT.. SO IF U COULD PLEASE REPOST IN THE PROPER PLACE.. THANKS MUCH LYNN

    Subject: Reporter looking to interview celiac women

    >

    >

    >

    > One of our ROCK members who's a freelance journalist is doing an article > on

    > Celiac women.

    >

    > Read below...

    >

    >

    > I'm a freelance journalist and writing a story on Celiac Disease and Women

    > ffor a New York-based magazine, Tri-County Woman.

    >

    >

    > Let interested Celiac women contact me either by email or phone:

    > 908--889-1935. I have about four or five questions to ask and believe it

    > will take about 15 minutes to interview someone. I am very grateful.

    >

    > I plan to include ROCK in my article. I noticed there are several ROCK

    > chapters in the Dutchess/Orange/Ulster region. Thank you for your help.

    >

    >

    >

    > Best wishes,

    >

    > Deb

    >

    > Deb Lehman

    >

    > 908-889-1935

    >

    > debjlehman@verizon.net


  22. HI ALL IM NOT SUPPOSED TO BE HERE. BUT I NEED UR HELP.. MY DAUGHTER WAS DX'D LAST YEAR AND I SIGNED HER UP HERE, BUT SHE WILL NOT COME.. ANYBODY GOT ANY GOOD IDEAS TO GET HER IN HERE??

    I'D REALLY APPRECIATE IT!!!

    THANKS SO MUCH

    LYNN AKA MOUTH :D