Posts Tagged ‘Gluten free’

 

John Libonati

9th Annual Gluten Free Picnic in Neptune New Jersey

May 24th, 2010 by John Libonati


 Seashore Celiac Support Group CSA #96 and Central Jersey Celiac/DH Support Group and Cel-Kids Network CSA#58 is pleased to announce their 9th annual…

100% Gluten Free Picnic!!!

Date: Sunday June 27, 2010 (Rain or Shine)
Time: 1 to 5pm
Where: Shark River Park – Neptune, NJ
Directions: http://seashoreceliacs.org/SharkRiver.htm

All family & friends of celiacs are welcome! (more…)


Kaitlin Fleming

The Easiest Dessert…Is Gluten Free

May 13th, 2010 by Kaitlin Fleming

This is one of the best desserts I’ve ever made and its incredibly easy and impossible to mess up and of course, gluten free.

I have been trying things out of Alicia Silverstone’s book, The Kind Diet: A simple Guide to Feeling Great, Losing Weight, and Saving the Planet. All of the recipes are vegan, but they also use awesome alternatives to using refined sugar all while still enjoying delicious treats. (more…)

Allison Hecht

Enjoy Gluten-Free Dining at Macaroni Grill

May 13th, 2010 by Allison Hecht

Most Italian restaurants are a minefield for gluten-free diners, but now you can add Macaroni Grill to the list of Italian restaurants that are more than accomodating to gluten allergies. Not only does Macaroni Grill offer a gluten-free menu, they also have special menus for those who have Shellfish, Tree Nut, Soy, Egg, and Peanut allergies.

So what can you get at Macaroni Grill? (more…)

Marissa Carter

The Gluten Free Challenge May 22 & 23

May 13th, 2010 by Marissa Carter

The Gluten Free Challenge has been issued, and everyone in Kansas City should answer the call. This isn’t a challenge for people who are already members of the gluten free elite, though. The Gluten Free Challenge is for people who eat gluten to experience being gluten free for one weekend.

The Gluten Intolerance Group (GIG) and Pamela’s Products have teamed up to issue The Gluten Free Challenge in honor of Celiac Awareness Month. The idea? Everyone should walk a weekend in a Celiac’s shoes! (more…)

May is Celiac Disease Awareness month. One in 100 people have Celiac Disease and only 3 percent are diagnosed in the United States. Part of the reason for the low rate of diagnosis is the range of symptoms of the disease.

A new video on Youtube does an excellent job of showcasing the many symptoms of Celiac Disease.

For more information about Celiac Disease visit the following websites: (more…)

 title=The University of Chicago Celiac Disease Center celebrates its 10th Anniversary with its annual Spring Flours Benefit at the Swissôtel-Chicago at 7pm on May 14, 2010. More than 30 restaurants will showcase gourmet gluten-free tastings to what expects to be a sell-out crowd. The evening will also include a tribute to its founder, Stefano Guandalini, MD, as well as robust Live and Silent Auctions.

(more…)

John Libonati

15 Celiac Disease Facts Everyone Should Know

April 1st, 2010 by John Libonati

Celiac disease awareness is growing, but misinformation still abounds. Here are 15 celiac disease facts every doctor, patient and member of the public should know.

    1. 1 in 700 - The average prevalence of celiac disease in the United States 1950. (Mayo)2. 1 in 100 – The average worldwide prevalence of celiac disease across all races today. (NIH) The average prevalence of celiac disease in the United States today. (Mayo)

    3. $8,500 - The average annual estimated healthcare cost of each person with untreated celiac disease in the United States. (Cigna/Columbia Celiac Disease Center study) (more…)

This article focuses on the two main antibody blood tests for celiac disease. It will tell you what each test looks for and what the results mean.

The two blood tests recommended when testing for celiac disease are the AGA-IgA test for gliadin (wheat proteins) as well as the tTG-IgA test for tissue transglutaminase.

Recent research indicates the blood tests most doctors are using, tTG & EMA, are not as reliable as first thought. Young children, elderly, smokers, the very ill and the not very ill can be missed. EMA, or endomysial antibodies has fallen out of favor so they will not be discussed.

Preparation for Testing

Make sure when being tested that you are on a gluten-containing diet, because the antibodies the tests look for would disappear if you are were gluten-free. Once you go gluten-free, future testing is unreliable.

AGA – The Test for Gluten Sensitivity

The AGA-IgA has fallen out of favor for CELIAC DISEASE, but it tests whether an immune reaction against GLUTEN (gliadin) is present in the system – it detects a GLUTEN SENSITIVITY reaction. You can have gluten sensitivity without developing the lesion that is characteristic of celiac disease. That is, you can have gluten sensitivity without celiac disease.

tTG – The Test for Celiac Disease

tTG tests for tissue transglutaminase antibodies, or antibodies against your own tissues. The tTG blood test does NOT tell you if you have celiac disease per se. It tells you the likelihood that villous atrophy will be discovered if an endoscopy with biopsy is performed. The higher the number, the more likely you have enough damage that one of the samples would show villous atrophy.

One thing to consider is that you have over 20 feet of small intestine. Biopsy samples are tiny and only about 5 are taken. How much damage is required before a positive biopsy sample is found?

Also, you can also have the beginning stages of celiac disease and the test results will be “negative” now, but if you were tested at a later date they could rise, making you positive. That is, the levels of antibodies now may not indicate probable intestinal damage enough to be found on endoscopy with biopsy. But they can rise over time – one month, six months, a year.

In one study we reviewed while creating the medical manual, Recognizing Celiac Disease, of the children who tested positive in the study, 40% had tested negative 5 years previously.

No test is 100% accurate. Determining celiac disease is still a judgment call. Even if the tests come back negative, try a strict 100% gluten free diet to see if symptoms improve. If they do, ask your doctor to take multiple vitamin and mineral levels to determine whether deficiencies exist.

Page 30 in Recognizing Celiac Disease lists the vitamins and minerals the NIH recommends checking: vitamins A, D, E, K, B12, folic acid and minerals calcium, iron, phosphorous.

The symptom charts in the book list which deficiencies cause which symptoms so you can determine which nutrient levels to test and give your doctor reasons to test for them. (Doctors will not take nutrient levels unless there is a reason to take them.) Correct the nutrient deficiencies and you will correct the symptoms in many cases.

A diagnosis is just a diagnosis. Good health is the most important thing.

For more information on the tests click here.

For more information on Recognizing Celiac Disease click here.

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Author Information: John Libonati, Philadelphia, PA
President-elect, Celiac Sprue Association (CSA).
Publisher, Glutenfreeworks.com.
Editor & Publisher, Recognizing Celiac Disease.
John can be reached at john.libonati@glutenfreeworks.com.

Saving a life means more than just keeping a person from dying. It means helping them get well.

While practicing medicine as a registered nurse, Cleo Libonati regularly saved people’s lives. Now her book “Recognizing Celiac Disease” is doing the same for people across the country and around the world.

Here is a letter telling how one family credits the book with saving their lives…

————————
Dear Cleo,

I have been “sick” most of my life (I turn 40 in July) with random things, too many to list here. I have been really sick the last 10 years, but started feeling as though I was “dying by the inch” in 2004. I finally broke down and went to my primary when premature ventricular contractions were occurring every 5-10 seconds that felt as though my heart was going to jump right out of my throat. I had many other random multiple sclerosis type symptoms, but the severity of the PVC’s were what scared me the most, that is until 2006. I began to have many gastro symptoms that kept me in the bathroom several times a day with alternating elimination problems, I couldn’t keep food down, and pain in the left side of my swollen, hard, tender abdomen every time I ate. I had an EGD and colonoscopy on 2/15/07. The three days before the test were the best I had felt in 4 years. Since I worked in Oncology and was used to seeing patients doing prep for them, I put myself on clear liquids 2 days before the Go-Lytely. So, I was gluten-free without knowing it for 3 days prior to testing. (more…)

Libonati_John_Philadelphia_PA

Philadelphians fill Wachovia Center to help raise awareness of celiac disease

A crowd of 1,200 gathered at the Wachovia Center on
Wednesday, September 30th to celebrate the gluten-free lifestyle during the 6th annual Appetite for Awareness event. Hosted by the National Foundation for Celiac Awareness (NFCA) and title sponsor Thomas Jefferson University and Hospitals, the event honoring
John Binswanger and his family raised over $300,000 to support the organization’s national awareness campaign and programming.

wachovia-center

Over thirty of Philadelphia’s best restaurants participated in the event, which featured an entirely gluten-free menu. The festivities were a special treat for guests with celiac disease, an autoimmune disorder treated only through a gluten-free diet, eliminating foods
containing wheat, barley and rye. Current estimates suggest the disease affects about 3 million Americans, yet over 95% live without a diagnosis.

Comcast-Spectacor Chairman Ed Snider, who is a member of the NFCA Board of Directors, generously donated the Wachovia Center facility, which has been home to Appetite for Awareness event since 2008. (more…)