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Celiac Awareness Letter Writing Campaign


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#16 Guest_gliX_*

 
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Posted 15 April 2005 - 09:50 PM

if its sent by mail it will probably receive more consideration

i'm not sure why, but probably
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#17 Guest_ajlauer_*

 
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Posted 15 April 2005 - 10:31 PM

There is less time involved in composing - as well as reading (and deleting) - an email. If you take the time to handwrite something... the reader will be more likely to take the time to read it after they have already opened the envelope. Emails may seem like a simple cut/paste, and that you didn't really invest any time in it.

I haven't actually researched the email vs postal issue... but that is my guess.
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#18 angel_jd1

 
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Posted 16 April 2005 - 04:46 AM

If you have the extra money to do yours by regular mail then feel free. I will be doing mine by email. I don't have a ton of extra money to spend on postage. Sorry.

-Jessica :rolleyes:
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Jessica
Gluten Free since 12-31-2002!!
Kansas

#19 mom

 
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Posted 16 April 2005 - 05:22 AM

;) Iwill do mine by e-mail also. Snail mail can also be "slow" to be read out of the snail "pile" As long as we all can send in the letters to get the message across--a variety of e-mail and snail mail(massive writing) will be great.

Mom
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#20 angel_jd1

 
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Posted 16 April 2005 - 05:33 AM

Totally agreed!!

-Jessica :rolleyes:
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#21 Guest_gliX_*

 
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Posted 16 April 2005 - 07:06 AM

I'll send a few by regular mail. Postage wouldn't be that expensive, it's only 1 stamp per company (because its based on weight of letter, not how far it's being mailed to).
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#22 angel_jd1

 
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Posted 21 April 2005 - 12:35 PM

A member from USASillyYaks has gotten Clan Thompson as a partner for our letter writing campaign, the following is her post onto my site about them and also the letter in which clan thompson talks about our campaign!! I thought it was pretty exciting.

-Jessica :rolleyes:

Just thought I'd let you all know I had asked for Clan Thompson (really interesting Celiac/gluten-free website) to participate in our letter writing campaign and here's the email they sent out to all the subscribers, this is a monthly I think newsletter that they have very generously included us in by Name! Score for USASillyYaks and the letter writing campaign, sorry very excited about their support! Jenn in LV

Clan Thompson <celiac@clanthompson.com> wrote:
Date: Thu, 21 Apr 2005 19:36:03 +0200
To: jendenise0401@yahoo.com
From: Clan Thompson <celiac@clanthompson.com>
Subject: Clan Thompson Celiac Newsletter: Issue #68 April 21, 2005

Clan Thompson Celiac Newsletter
Issue #68 April 21, 2005

Copyright 2005 by Clan Thompson
All rights reserved. Subscribers may print copies of this newsletter for others to read or send copies to their friends as long as the ENTIRE publication is printed or sent along with all copyright notices and attributions. Sending and/or printing excerpts is not allowed without written permission.

To learn more about celiac disease, visit us online at:

To subscribe to this newsletter: http://www.clanthomp..._subscribe.html
To unsubscribe: http://www.ymlp.com/...e0401@yahoo.com

****************************
In this issue:

1. News: MALT-O-MEAL CEREALS CHANGES INGREDIENTS
GLUTEN-FREE DIET MAY ALLEVIATE DEPRESSIVE AND BEHAVIOURAL SYMPTOMS...
SURVEY RESULTS ON CELIAC DISEASE
USASillyYaks NEEDS YOUR HELP IN A LETTER WRITING CAMPAIGN
2. Where To Find Gluten Free "Stuff"
3. The Cook's Corner: PARMESAN BAKED SALMON
4. Ask the Cook: DOES THE BLENDING OF WET INGREDIENTS ADD "LIFT" TO MY CAKE?
5. Announcements: NEW FOOD SMARTLIST DEMO RELEASED!
6. Ask the Doctor: IS CELIAC DISEASE RELATED TO RAGWEED ALLERGY?
7. This Month's List: GLUTEN FREE FOODS
8. Letters From Our Readers

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1. MALT-O-MEAL CEREALS CHANGES INGREDIENTS

by Lani K. Thompson

Malt-O-Meal Cereals was known for providing celiacs with three cereals that did not contain any gluten containing ingredients, but that has changed. After hearing that wheat starch had been added to the Dynabites and Corn Bursts cereals, I called them to register my concerns and to let them know how much their decision would affect celiacs who have so little choice when buying cereals in mainstream supermarkets.

The woman who took my call knew why I was calling as soon as I asked to speak to Shannon, the Consumer Affairs Manager. "Is this about the gluten free ingredients?" she asked. I said yes. She said she could answer my questions, so I asked her why her company had decided to start adding wheat starch to the cereals that previously contained gluten free ingredients.

She said Malt-O-Meal cereals are not made on dedicated lines and the company is concerned that if people don't see wheat in the ingredients they might think it's safe to eat and, because of the possibility of cross contamination, someone might have a severe allergic reaction and die. However, she said, the company is aware of the problems celiacs face because one of their own managers has celiac disease!!

I asked them if there were any plans to develop a dedicated line and she said, "We certainly hope so but, until we can, we have to look at the whole allergen situation." She did say that Fruity Dynabites will continue to be made with gluten free ingredients even though the company will not say it is gluten free. She said the company will do this because Fruity Dynabites is made in an area that does not contain any wheat.

Malt-O-Meal Cereals is collecting comments from those who call in with their concerns and the woman I spoke with admitted that there have been many, many calls. If you'd like to call, you can reach them at 1-800-743-3029.

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GLUTEN-FREE DIET MAY ALLEVIATE DEPRESSIVE AND BEHAVIOURAL SYMPTOMS IN ADOLESCENTS WITH COELIAC DISEASE

Coeliac disease in adolescents has been associated with an increased prevalence of depressive and disruptive behavioural disorders, particularly in the phase before diet treatment. This study looked at the possible effects of a gluten-free diet on psychiatric symptoms, on hormonal status (prolactin, thyroidal function) and on large neutral amino acid serum concentrations in adolescents with coeliac disease commencing a gluten-free diet.

RESULTS: Adolescent coeliac disease patients with depression had significantly lower pre-diet tryptophan/competing amino-acid (CAA) ratios and free tryptophan concentrations, and significantly higher biopsy morning prolactin levels compared to those without depression. A significant decrease in psychiatric symptoms was found at 3 months on a gluten-free diet compared to patients' baseline condition, coinciding with significantly decreased coeliac disease activity and prolactin levels and with a significant increase in serum concentrations of CAAs.

CONCLUSION: Although our results of the amino acid analysis and prolactin levels in adolescents are only preliminary, they give support to previous findings on patients with coeliac disease, suggesting that serotonergic dysfunction due to impaired availability of tryptophan may play a role in vulnerability to depressive and behavioural disorders also among adolescents with untreated coeliac disease.

Read the entire article online here: http://www.biomedcen.../1471-244X/5/14

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SURVEY RESULTS ON CELIAC DISEASE AWARENESS: Physician Survey Shows Need for Education About Diagnosis and Symptoms

FLOURTOWN, Pa. and SAN MATEO, Calif., March 29 /PRNewswire/ -- The Children's Digestive Health and Nutrition Foundation (CDHNF) with the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) announced today the findings from a survey of 200 pediatricians, family practitioners, and endocrinologists revealing the lack of understanding about celiac disease (celiac disease) in children. The survey was conducted by CDHNF in partnership with Epocrates, Inc., using the Epocrates Honors® Market Research Panel.

The survey results supported the clear and urgent need to promote awareness of the individuals at risk, the associated conditions, the proper method of screening for celiac disease, and the necessary step of confirming the diagnosis with a small intestinal mucosal biopsy.

Regarding the diagnosis of celiac disease, only 16% of respondents chose the most appropriate first line serological screening test for celiac disease, which is the IgA-anti-human tissue transglutaminase antibody. If the patient has positive serology for celiac disease, the majority of the survey respondents did not recognize the need to confirm the diagnosis with an intestinal biopsy before starting a gluten free diet.

"Up to 50% of individuals screened with an anti-gliadin antibody test may not have celiac disease at all, particularly if the person has atypical symptoms. The survey suggests that some people unnecessarily are recommended a gluten free diet, while others at risk are not being properly screened, identified and placed on a gluten free diet," said survey co-author and CDHNF Celiac Campaign Scientific Advisor Martha Dirks, MD, Sainte-Justine Hospital, University of Montreal, Canada.

"It is also of concern that the permanent nature of celiac disease is not emphasized by our physician respondents. Less than 65% of respondents recognized that a life-long adherence to a gluten free diet had to be maintained," added Dr. Dirks.

In terms of recognizing symptoms, two thirds of the respondents felt that they were aware of at least three GI related symptoms of celiac disease and could correctly identify short stature and iron deficient anemia resistant to oral iron as manifestations of celiac disease.

However, the survey also revealed there is a lack of awareness about associated conditions with celiac disease. For example, an average of 5% of people with Type I diabetes have celiac disease. However, less than 50% of respondents were aware of the association and almost 30% of respondents were against screening individuals with Type I diabetes. In addition, greater than 75% of respondents were unable to identify the condition NOT associated with celiac disease among a list of associated conditions.

"The level of knowledge of celiac disease is not what we like it to be. The survey illustrates that clear educational initiatives are needed to promote appropriate testing of persons at risk for celiac disease such as the recently released NASPGHAN Celiac Guidelines, NIH Consensus Conference, and our CDHNF grand rounds program," said survey co-author and CDHNF Celiac Campaign Scientific Advisor Stefano Guandalini, MD, University of Chicago. Dr. Guandalini added that an area definitely in need to be better known is that of screening for family members of patients with celiac disease. "With an incidence higher than 5%, first-degree relatives must be screened for celiac disease, something that is only sporadically recommended."

The survey indicates the need to provide medical professionals with as much information as possible about celiac disease. As a result, Epocrates has teamed up with CDHNF to distribute the CDHNFCD guidelines, gluten free diet guide and other educational resources to over 140,000 medical professionals via their DocAlert® messaging technology which will allow medical professionals to save the guidelines summary to their hand-held device and request additional information via e-mail.

"Epocrates continues to focus on patient care and safety, and our members look to us to provide the latest, most current information on drugs and diseases such as that provided through this campaign. We are pleased to support this effort to promote child health and wellness," said Kirk Loevner, Epocrates President and CEO.

The NASPGHAN and CDHNF survey was conducted through the Epocrates Honors market research panel, which enables healthcare professionals to share their clinical expertise. Typically, this research consists of online surveys that take between 10 to 45 minutes to complete. Criteria to participate vary by study. In exchange for their participation, users receive an honorarium. Fifty-seven of the nation's largest healthcare market research companies conduct hundreds of studies annually by accessing the industry-leading Epocrates Honors panel of more than 121,000 U.S. physicians and 254,000 allied healthcare professionals including physician assistants, nurse practitioners, RNs, dentists, pharmacists and others.

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USASillyYaks NEEDS YOUR HELP IN A LETTER WRITING CAMPAIGN

USASillyYaks, a support group for those with Celiac Disease, has started a Celiac Disease Awareness Letter Writing Campaign which will run from April 26 to 28. Their goal is to write letters to popular television shows in the hopes of increasing awareness about Celiac Disease and motivating one of the shows to do a segment on Celiac Disease. The group is asking individuals and companies with knowledge of Celiac Disease to support their campaign by writing letters. If you don't want to write your own letter, you can get a copy of a generic letter by emailing Jennifer Heinemeier at jendenise0401@yahoo.com

LIST OF CONTACTS:

Contact Oprah by clicking on the below listed link and filling in their email form:
http://www2.oprah.co...tows_main.jhtml

Good Morning America, Weekend News & World News Tonight email address:
NETAUDR@abc.com

Nightline's email address:
niteline@abc.com

Primetime Live email address:
abc.news.magazines@abc.com

20/20 email address:
2020@abc.com

This Week email address:
thisweek@abc.com

ABC News can also be contacted via snail mail:
ABCNews, 7 WEST 66th Street, New York, NY 10023

To email the ladies from The View click on the link below which will take you to their page and you can choose who you want to email. Barbara is the main host.
http://abc.go.com/daytime/theview/

The Early Show email:
EarlyShow@CBS.com

CBS Evening News
evening@cbsnews.com

48 Hours
48Hours@cbsnews.com

(CBS) 60 Minutes:
ADDRESS:
60 Minutes
524 West 57th St.
New York, NY 10019
EMAIL: 60m@cbsnews.com

(CBS) 60 Minutes Wednesday
ADDRESS:
60 Minutes Wednesday
524 West 57th St.
New York, NY 10019
EMAIL: 60w@cbsnews.com

MSNBC email:
letters@msnbc.com

The Ellen Show link to email her:
http://ellen.warnerb...uff/onyourmind/

To email the Montel Show you have to sign up and log in. The link is:
http://www.montelsho.../about/mail.htm

Live With Regis & Kelly mailing address
Live with Regis & Kelly, 7 Lincoln Square, NY, NY 10023

The Today Show
today@nine.com.au

The Jane Pauley Show link to email:
http://www.thejanepa...ourfeedback.php

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2. Where To Find Gluten Free "Stuff"


---AD: ANGELIC GROOVES CELIAC AWARENESS JEWELRY ---

Beautiful, fashionable way to raise awareness for celiac disease with 20% of profits go to Celiac Programs

For more information, and to see our BIG Celiac jewlery specials for April, please visit our website at: www.angelicgrooves.com


---AD: GLUTEN SOLUTIONS ---

Craving bagels and buns? Gluten Solutions features new sesame and poppy seed bagels by Sterk's Bakery - just toast 'em and serve. For a limited time, subscribers of Clan Thompson can receive a 10% discount off all products purchased at www.glutensolutions.com.

In addition to bagels, Gluten Solutions is now featuring hot dog and hamburger buns for the perfect BBQ, as well as some great sponge cakes - just click on "New Products" to see all our newest treats. Be sure to visit www.glutensolutions.com to redeem your 10% discount when you checkout - just enter the following promotional code on our web site: Clan Thompson


---AD: DIETARYCARD.COM ---

Eating out one of life's greatest pleasures - don't miss out because of your diet.

www.dietarycard.com make ordering gluten-free at home and abroad risk-free and stress-free.

We're now offering discounted Classic Celiac Cards as well as our customised Dietary Alert Cards.

Put peace of mind in your pocket today at www.dietarycard.com.


---END OF ADS---

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3. The Cook's Corner: PARMESAN BAKED SALMON

---
(Editor's Note: Connie Sarros has been busy traveling this year. Since January, she has spoken to celiac support groups in PA, NJ, MD, VA, AL, GA, NC, OH and WV. She was also the guest speaker at the Heath Food Fair at the Cleveland Convention Center.

Connie’s cookbooks may be purchased at bookstores, health food stores, or directly from her website at www.gfbooks.homestead.com.)

--

by Connie Sarros

Below is a quick and simple meal to prepare, but the taste is divine. If a piece of salmon is thick on one side and narrow on the other, fold the narrow side under partway before placing the fish in the baking pan. This gives the fish a uniform thickness so it will cook evenly.

PARMESAN BAKED SALMON
6 salmon fillets, 5 oz. each
1/3 cup gluten-free lowfat mayonnaise
3 Tbsp. gluten-free grated Parmesan cheese
3 Tbsp. minced green onion
1 tsp. gluten-free white wine Worcestershire sauce

Preheat oven to 400 degrees. Spray a baking dish with gluten-free nonstick spray. Rinse the fish then pat it dry with paper towels. Place the salmon pieces in the baking dish. In a small bowl, whisk together the mayonnaise, cheese, onion and Worcestershire sauce; spread this mixture evenly over the fillets. Bake, uncovered, 15 minutes or until the fish flakes easily with a fork. Serves 6. Calories: 281


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4. ASK THE COOK

by Connie Sarros

(Editor's Note: Readers are invited to submit their gluten free cooking questions to Connie at celiac@clanthompson.com. The words "ASK THE COOK" must appear in the subject line or your email may be filtered as "spam".)

---
Dear Connie,

I have to bake gluten, dairy, egg, and soy-free - I call my creations my "What's IN It? Cakes" since everyone asks me when I serve them. I've begun to blend all the wet ingredients together in a blender to froth them up, starting with my egg replacer, then quickly adding the others, and finally folding in with the dry. I don't have a mixer. Does the blending of wet ingredients add lift to my "What's IN It? Cakes" or is it all in my head? Thanks, Alix

Hi Alix,

Yes, whipping liquid ingredients definitely DOES make the baked product lighter. You mentioned using egg replacer (which usually is a potato flour base). For an even lighter product, prior to adding the other liquid ingredients, mix your egg replacer with 3 Tbsp. of applesauce or mashed banana or pureed prunes or apricots. This will help boost the replacer plus add more flavor to your cakes. Increase your baking powder a bit, too. Isn't it wonderful that, even though you have mulitple dietary restrictions, you can still enjoy such a variety of foods just by making a few adjustments to the recipe? (Connie)

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Question-- Connie, your halva recipe sounds yummy, but what is cream of rice? I live in Australia and we sometimes have different names. Gail

Answer-- Cream of Rice is a packaged rice product that is usually mixed with warm milk and served as a breakfast cereal. It is sold in the cereal section of the grocery store near the oatmeal. The rice is ground fine, but not as fine as powder, making it easy to incorporate it into many dessert recipes.

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Hi Connie, I am told flaxseed is good for us and I think gluten free.. I purchased a small amount and ground it in our coffee grinder. My question is when I make a 2 pound loaf of bread in my bread machine how much flaxseed can I put in the recipe. I enjoy reading your comments and suggestions...Bernard

Hi Bernard, Kudos to you, Bernard! Flax seed is nothing short of a miracle. It has 73 times more natural fiber than any other plant! And it has no taste so you can add it to everything! For a 2 lb. loaf of bread, I typically add 5 Tbsp. of flaxseed. I use whole flax seed (crushed slightly with a rolling pin) for mock rye bread, and ground flax seed in all the other breads. Be sure to keep the flax in your freezer because it turns rancid rather quickly at room temperature. (Connie)

---

Dear Connie: The use of soy presents a problem for me. I currently read that if you are on thyroid medication that you should cut the soy to once or twice a week. What can I use as a replacement for tofu in recipes? I also cannot have dairy products since I am lactose intolerant. Thank you. Sandra Milne

Sandra, you sure know how to ask the difficult questions. The most common substitute for those who are lactose intolerant are soy-based products, which you cannot tolerate. Still, there are several viable options for you. Gluten-free Pantry and Shop-by-Diet have bread mixes (white breads, sweet breads, cornbreads, pizza crust and more) that are soy and lactose free. Gluten-free Pantry also has a soy-free, lactose-free alfredo sauce packet, 3-pack ChReese (not misspelled), and Road's End ChReese Dip (spicy). Some vegetable bouillon cubes are soy-free and lactose-free. When baking, you can often substitute 3/4 cup oil (light olive oil) for butter or margarine called for in cake and bread recipes. Some people on a lactose-free diet can tolerate unpasturized yogurt which can be used to make dips, mashed potatoes, and more. There are even some brands of cottage cheese that are lactose-free. As for milk in your cereal, rice milk is available. Miss Roben's has gluten-free/SF/LF pudding mixes that you can make with coconut milk. She also offers a potato-based, soy-free, gluten-free non-dairy milk powder alternative that can be used for baking purposes, plus onion soup and dip mix., and gluten-free/SF/LF gravy mix packets. When you have a craving for pizza, you may want to check with Life Time Cheese (rice-based cheese). The only questionable ingredient on their label is "natural flavorings", so it's best to call the company before using their product. http://www.lifetimecheese.com/rice.htm. You also have the option of using Lactaid (an enzyme to help digest lactose) when you want to eat a 'real' dairy product occasionally. Hope this helps you some. (Connie)

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5. Announcements: NEW FOOD SMARTLIST DEMO RELEASED

CLAN THOMPSON - A new food SmartList demo was released this month. The new demo contains gluten info for around 608 items! For more info, to download a FREE DEMO or to purchase, visit our CeliacSite online at www.clanthompson.com/ and click on our Products/Catalog page.

---

(EDITOR'S NOTE: Enter your group's events on our Calendar at http://www.clanthompson.com/discussion and they will automatically be included in our celiac newsletter that month.)

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VIRGINIA BAKE SALE

TWEGIG's Moving Feet Without Wheat Walk & Bake Sale
When: Saturday, May 21 2005 @ 10:00 AM - 02:00 PM
Where: Deep Run Park, Shelters 1 & 2; contact agashworth@aol.com for directions
Ridgefield Parkway, Richmond, VA 23233

Description: Come join the fun and bring the kids! Clowns, balloons, bake sale, and a 3 mile hike through the beautiful, wooded park and around the lakes at Deep Run Park in Henrico County, adjacent to the city of Richmond, VA. Gift baskets for sale as well. The purpose of this event is to raise awareness and funding for two research organizations: Intestinal Health Institute (www.intestinalhealth.org) and Center for Celiac Research (www.celiaccenter.org). For more information, please contact Anna Ashworth @ agashworth@aol.com.

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COMPETITION LOOKS FOR GLUTEN FREE BEER RECIPE

The 9th Annual Amber Waves of Grain Homebrewed Beer Competition is looking for beers made with some very special ingredients. This year’s competition has added a special brewing style called “Category 99 – Gluten Free Brewing”. This category, sponsored by Bard’s Tale Beer, provides a unique challenge to beer brewers because most of the traditional brewing grains cannot be used. The Amber Waves of Grain Competition dates are May 20th – 21st and the entry deadline is May 6th. There is a $5.00 entry fee for each entry. Details about the competition, including entry forms and instructions, can be found at www.betterbeermovement.com. Due to the sensitivity of this beer category, you must submit a complete list of ingredients for each entry.

---
CONNIE SARROS IN WEST VIRGINIA

When: Saturday, April 23 2005 @ 01:00 PM - 03:00 PM
Where: Healthy Life Market, 909 Cross Lanes Dr.Cross Lanes, WV

Description: Connie Sarros, author of 4 gluten-free cookbooks, will be speaking to the southern WV celiac support group about 'Gluten-free Conversions'. She explains how to SUCCESSFULLY convert wheat recipes to gluten-free. For more information, contact Karen Daniel, krdaniel@charter.net

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DR. CYNTHIA S. RUDERT IN TENNESSEE

Dr. Cynthia S. Rudert will speak to physicians and nurses in Chattanooga, Tennesse on April 28th when she will present "Updates on Celiac Disease from the NIH Conference". A reception is scheduled for 6:30 pm and there will be a dinner at 7:00 pm at the Back Inn Cafe, 412 East Second St., Chattanooga. For more info and to RSVP by 4/22, contact Jeannie Zibrida at 1-888-423-5277, ext. 4255. Sponsored by Prometheus Laboratories.

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6. ASK THE DOCTOR

(Editor's Note: Please send your celiac-related medical question to . Questions that are submitted to this column will be published in future editions of our newsletter. If you do not want us to print your real name, please use initials or an alias.

Although the doctors cannot answer every question, they will try to answer as many questions as time permits. Overly long questions, and questions that are relevant only to the person submitting them will not be considered. The phrase "Ask the Doctor" MUST appear in the subject line or your email may be filtered as spam.)
---
(Editor's Note: Dr. Alessio Fasano, a professor of medicine, pediatrics and physiology at the University of Maryland School of Medicine, also serves as a Co-Director of the University of Maryland Center for Celiac Research, and director of Pediatric Gastroenterology and Nutrition at the University of Maryland Hospital for Children. Dr. Fasano is recognized as an international authority on celiac disease. In addition to investigating the prevalence of celiac disease, Dr. Fasano is working to develop more sensitive non-invasive techniques for diagnosing the disease. Dr. Fasano received his M.D. from the University of Naples.)

---
Hi: I'm a newly diagnosed celiac and I have lots of questions: Is celiac disease related to any of these things: restless legs, ragweed allergy, photosensitivity (being out in the direct sun causes rash and swelling), intolerance of fountain dispensed iced tea (severe abdominal cramps)? One of my symptoms has been severe fatigue. Will this ever go away? Janine

Dear Janine, Celiac disease may afect nerves and, therefore, it can sometimes cause restless legs. Of the other symptoms listed, only fatigue has a clear association with celiac disease. Most of the time it is secondary to iron deficiency, in which case the symptoms will go away once the anemia is corrected. Dr. Fasano

---
I was wondering if you know of any connection between celiac disease and nephrotic syndrome? Thank-you, Linda

There is no such an association, however co-morbidity with IgA nephropathy has been described.

---

I was diagnosed with Hashimoto's Thyroiditis in 1992, for which I take levoxyl. I was clinically diagnosed with Sarcoidosis in May of 2004. Since that time I have discovered that I am a celiac via blood tests. I have seen many Celiac articles/websites that claim an "association" between Celiac Sprue and these other diseases. Can you better describe
this association? I ask in hopes that Celiac may be the cause of the other diseases, and not the other way around. I have been eating gluten-free for a couple of months now, and though I know that the damage to my thyroid is likely non-reversible, I am hoping that the Sarcoidosis will go into remission with my new diet. Also, I live in the Boston area. Can you recommend any doctors that may look at my disorders holistically? Many thanks in advance. Jens (Male, Age 36)

Dear Jens, The association bewteen celiac disease and Hashimoto is well described and current theories suggest that untreated celiac disease can lead to other autoimmune diseases, including Hashimoto. The association with Sarcoidosis is more tenuous and only occasionally described. Dr. Fasano

---

(Editor's Note: Dr. Cynthia S. Rudert, M.D., F.A.C.P. is a Board Certified Gastroenterologist in Atlanta, Georgia, specializing in Celiac Disease. She is the Medical Advisor for the Celiac Disease Foundation and for the Gluten Intolerance Group. She is the Medical Director of the Gluten Sensitive Support Group of Atlanta and a member of the Celiac Standardization Group.)

Dear Dr. Rudert: My question is with children and learning disabilities, ADHD, ADD, caused from celiac disease. I am a parapro, TA, I also have celiac disease and was dx over a year ago. I have noticed that many of the children I have contact with seem to have symptoms similar to the ones I had while growing up I wonder if you could elaborate for me some of the learning disabilities in children caused from celiac disease? Thanks. Eileen

Dear Eileen, Occasionally individuals with Celiac Disease may have associated neuropsychiatric disorders. Celiac Disease may present with a variety of neurologic conditions, including: migraine headaches, cerebellar ataxia, epilepsy, and peripheral neurophathy. These conditions are more apt to be seen in adults. Dr. Nathaniel Zelnik and colleagues from the Technion-Israel Institute of Technology, in Haifa, Israel recently published their research on a 111 patients with Celiac Disease. 51.4% developed neurologic disorders compared with only 19.9% of control patients (without Celiac Disease). These neurologic manifestations included hypotonia, developmental delay, learning disorders, ADHD, headache and cerebellar ataxia. This research was published in Pediatrics 2004;113:1672-1676. Sincerely, Cynthia S. Rudert, M.D.

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7. This Month's List: FOODS

You'll find these items - and many more - in our food SmartList which contains around 3,464 items. For more info, to download a FREE DEMO or to purchase, visit our CeliacSite online at www.clanthompson.com/ and click on our Products/Catalog page.

The following items were GLUTEN FREE when we contacted manufacturers between December, 2004 and March, 2005:

Campbell's Chunky Chicken Broccoli Cheese Soup - 18 oz.
Hormel Microwave Bean & Ham Soup
Shelton's Turkey Chili Mild (48481-01101)
Shelton's Turkey Italian Sausage (48481-00983)
Shelton's Turkey Franks (48481-00991)
Safeway Cereal (Corn Nuggets - Puffed Corn - Fruity Nuggets)
Select Jams/Jellies
Healthy Advantage Corn Chowder
Haribo's Alphabet Letters
Lucerne Cream Cheese (regular/fat free - neufchatel)
A Taste of Thai Pad Thai for Two
Jelly Belly Confections Gelatin items
Ener-G Cinnamon Crackers or Gourmet Crackers
Applegate Farms Pancetta
Applegate Farms Roast Beef
Willy Wonka Wonderball
Nestle Toll House Mint Semi-Sweet Chocolate Morsels
Nestle Toll House Semi-Sweet Chocolate Covered Raisins
Bacardi Party Drinks
Martini & Rossi Dry Vermouth
Bacardi Rums (Superior - Gold - Select - 151 - all flavored)
Martini & Rossi Asti
Drambuie Liquer

The following items were GLUTEN FREE and VEGETARIAN when we contacted manufacturers between February and March, 2005:

Stoneyfield YoBaby Yogurt (all except YoBaby Plus)
Let's Do Organic Black Licorice Bears
Jolly Time Healthy Pop Butter (mini or 94% fat free)
Manischewitz Cooking Sprays - all
Rainforest Organic Mango Sauce
Foods Alive Flax Crackers (Mexican Harvest - onion garlic - regular)
Goelitz Candy Corn
Nature's Path Mesa Sunrise Flakes
Mr. Spice Ginger Stir Fry Sauce
Benecol Light Spread
Starbucks bottled Frappucino
Starbucks Cappacino
GeniSoy Protein Bar (chunky peanut fudge - creamy peanut yogurt or all of the low carb crunch bars)

****************************

8. Letters From Our Readers:

The FDA is asking for input on food labeling and I hope my fellow Celiac sufferers will write and encourage them to make clear labeling of the major food offenders. It's outrageous that gluten can hide behind things such as "natural flavors" and various emulsifiers.

I just discovered your terrific website a few minutes ago and have only read part of it, so you may already have advised people to write the FDA at fdadockets@oc.fda.gov. If not, I think it is a good thing to do. Thanks so much, Anne

_____________________________


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Jessica
Gluten Free since 12-31-2002!!
Kansas

#23 mom

 
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Posted 21 April 2005 - 03:37 PM

;) Completely awesome! :rolleyes: :) :D

Mom ;)
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#24 angel_jd1

 
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Posted 25 April 2005 - 11:55 AM

Tomorrow our letter writing campaign begins!! Don't forget to get those letters sent and see what we can do!! You are given 3 days to get the letters written and sent. You are welcome to use the generic letter if that makes things easier for you. Either way just write write write!! Hopefully we will get some sort of response out of it, or at least create some awareness!!

-Jessica :rolleyes:
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Jessica
Gluten Free since 12-31-2002!!
Kansas

#25 angel_jd1

 
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Posted 26 April 2005 - 02:13 AM

Today (thru thurs) you can begin writing your letters to the tv shows and news shows!! Have a great time and post when/if you hear something back from anyone!!

-Jessica
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Jessica
Gluten Free since 12-31-2002!!
Kansas

#26 angel_jd1

 
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Posted 27 April 2005 - 11:58 AM

The folks over at USASillyYaks noticed that on Oprah's site that they are looking for people with odd disorders, so many people have been posting their letters under that topic at the Oprah site. Just thought I would give you all a heads up on that.

How is the letter writing going for everyone??

-Jessica :rolleyes:
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Jessica
Gluten Free since 12-31-2002!!
Kansas

#27 yllehs91

 
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Posted 27 April 2005 - 02:27 PM

Hey. I just got finished e-mailing about 20 companies (most of them that were on here already). But I also added about 2 --one news station & one newspaper -- from my area to the list. I e-mail the generic e-mail, but with a msg at the top, explaining how long I've had it, and that it's imporant to me, and to get the msg out...etc...so that it'd be a bit more personal. Well, I hope it works! Good luck everyone! :D
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14/f/tx diagnosed 9/27/04

#28 angel_jd1

 
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Posted 27 April 2005 - 02:36 PM

I just got finished e-mailing about 20 companies


WOW! Nice work!!! Let us know if you hear anything back from them.

-Jessica :rolleyes:
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Jessica
Gluten Free since 12-31-2002!!
Kansas

#29 KaitiUSA

 
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Posted 27 April 2005 - 03:29 PM

I emailed about 50 news stations and shows so far.
I also put in for the Oprah show and gave my story with a brief letter.
I plan to snail mail some companies and am finishing up the letters now...also contacting local stations.
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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#30 angel_jd1

 
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Posted 27 April 2005 - 03:42 PM

I emailed about 50 news stations and shows so far


Keep up the great work Kati!!

-Jessica :rolleyes:
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Jessica
Gluten Free since 12-31-2002!!
Kansas




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