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Fyi: American Celiac Disease Alliance


Turtle

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Turtle Enthusiast

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??


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Guest cassidy

I just tried and it wouldn't come up.

Aerin328 Apprentice

Confirmed, the link "Take Action" does not work

Nantzie Collaborator

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

ravenwoodglass Mentor

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

Turtle Enthusiast

Got it to work! COOL!

cmom Contributor

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.


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Judyin Philly Enthusiast

I just did it too

judy in philly

debmidge Rising Star
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.

DrMom Apprentice

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

mcsteffi Rookie
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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    • trents
      I have many of those same CMP irregularities from time to time, with the exception that my potassium is always normal. What I can tell you is that it is normal for everything not to be normal when you get a CMP done. I used to get a CBC and CMP done annually and there were always some things out of spec. Docs don't get excited about it for the most part. It depends on the particular parameter (some are more important than others) and it depends on how far out of range it is. Docs also look for trends over time as opposed to isolated snapshots of this or that being out of spec at any given time. Our body chemistry is a dynamic entity. 
    • trents
      Not sure what you mean by "soy being like gluten". Soy does not cause a celiac reaction. However, soy is one of the foods that many celiacs don't tolerate well for other reasons. Eggs, corn and dairy are also on that list of foods that many of those with celiac disease seem to be sensitive to. But that doesn't mean that all celiacs are sensitive to any one of them or all of them. It just means it's common. You may not have a problem with soy at all. Celiac disease is not a food allergy. It is an autoimmune response to the ingestion of gluten that creates inflammation in the small bowel lining that, over time, damages that lining.
    • Rejoicephd
      Hey all  Has anyone on here experienced any of the following on their basic metabolic panel results ? This is what mine is currently flagging : - low sodium  - nearly too low potassium - nearly too low chloride - high CO2  - low anion gap  This is now after being nearly gluten-free for over a year (although I admit I make mistakes sometimes and pay dearly for it). My TtG went down to undetectable. I was so sensitive to so many foods I am now avoiding meat dairy and don’t eat a lot of cooked food in general (raw veggies, white rice, avocados and boiled eggs are my usual go-to meal that doesn’t make me sick). But my abdomen still hurts, i have a range of other symptoms too (headaches that last for days before letting up, fatigue, joint pain, bladder pain). Anyway im hoping my urologist (that’s now the latest specialist I’ve seen on account of the bladder pain and cloudy urine after eating certain foods) will help me with this since he ordered this metabolic panel. But I’m bouncing around a lot between specialists and still not sure what’s wrong. Also went back to the GI doctor and she thought maybe the celiac is just not healed or I have something else going on in the colon and I should have that looked at too. I’m still anemic too BTW. And I’m taking sooo may vitamins daily. 
    • xxnonamexx
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    • knitty kitty
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