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Turtle

Fyi: American Celiac Disease Alliance

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The celiac community showed its strength and Congress passed a landmark food allergen labeling bill. Now, it's time to take on the health insurance

companies.

A major project of the American Celiac Disease Alliance (ACDA) is working

with insurance companies to provide reimbursement for dietician services.

Your help is needed to demonstrate there are many individuals with celiac

disease and almost ALL can benefit from the services of a registered

dietician. The ACDA has prepared a brief online survey to find out which

companies are covering dietician services and which are not. The survey

results will be used to educate insurance companies about WHY such services

are so vital.

Please participate in the survey by going to our online advocacy site -

www.capwiz.com/celiac . (Complete the survey just once, please.)

An earlier version of this survey was provided to attendees at the GIG annual

conference and may have been distributed to some support groups. If you

completed that survey, it's ok to take this survey, too.

If your support group has a website, feel free to link to the ACDA Advocacy

site to make it easier for your members to participate in the survey.

While you are at the advocacy site, don't forget to add your name to the

Action-E List to get updates on breaking news affecting the celiac

community.

Andrea

Andrea Levario, J.D.

Executive Director

American Celiac Disease Alliance

4331 E. Baseline Road

Suite B105-216

Gilbert, AZ 85234

Email: info@americanceliac.org

Phone: 703.622.3331

I couldn't get the survey to come up...anyone else??


~Turtle~

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Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


Confirmed, the link "Take Action" does not work


Gluten free since 7/6/06. :)

Enterolab Results positive 8/24/06:

Antigliadin IgA 33 (Normal Range <10 Units)

Antitissue Transglutaminase IgA 16 Units (Normal Range <10 Units)

Anti-casein (cow’s milk) IgA antibody 21 Units (Normal Range <10 Units)

Serologic equivalent: HLA-DQ 3,1 (Subtype 8,5)

Blood test somewhat positive 7/6/06:

Antigliadin IgG (only) 57 (Normal range <20 units)

"Perspective is Reality"

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I just did it like two seconds ago and it worked for me when I clicked on Take Action. I was able to complete the survey with no problems.

???

Nancy


The person who says it cannot be done should not interrupt the person who is doing it.

~Chinese Proverb

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I just did the survey also. Make sure you click on the 'take action' in the center of the survey not the top.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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This would be great if dieticians were up to snuff on celiac. However, in my experience, they are not very helpful. Advising things such as eating Rice Krispies are acceptable and when questioned about the malt, they have no idea. It was a waste of money for me and my health insurance.


Robin from Indiana

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I just did it too

judy in philly


Judy in Southern CA

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This would be great if dieticians were up to snuff on celiac. However, in my experience, they are not very helpful. Advising things such as eating Rice Krispies are acceptable and when questioned about the malt, they have no idea. It was a waste of money for me and my health insurance.

We had the same experience with a Nutritionist (it was a waste of time and money) and it was paid by insurance as I had a note from the Gastro justifying the need for the visit. I only had to pay the normal co insurance.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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I just completed the survey with NO problems. I was asked by GI if I wanted to talk to a nutritionist, and I declined. I am self taught about celiac and doing fine. They are NOT up to date on celiac disease.

Dr Mom


Dx celiac sprue 06-06-06

Prometheus Labs in California, blood work

AGA IgG=negative AGA IgA=negative

TTG IgA=positive EMA IgA=positive

Endoscopy shows moderate to severe villa blunting

severe asthma, COPD

right Bundle Branch Block (heart conduction)

short PR interval (heart)

Arnold Chiari Malformation

Irritable Bowel Syndrome

Fibromyalgia, Myofascial pain syndrome

GERD

Osteoporosis, osteoarthritis

Severe claustrophobia

Gallbladder removed

When someone you love becomes a memory,

that memory becomes a treasure.

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This would be great if dieticians were up to snuff on celiac. However, in my experience, they are not very helpful. Advising things such as eating Rice Krispies are acceptable and when questioned about the malt, they have no idea. It was a waste of money for me and my health insurance.

My insurance did cover a dietician and she wasnt much help. The only thing she did that was helpful was give me the name of the celiac contacts at the health food stores. All other information she gave me I already had, even some was incorrect. And being that she isnt celiac she really couldnt answer alot of questions for me.... the best answers I have found have been on this message board.... this place is a life saver!!!

Stephanie

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