Tag Archives: Celiac disease

Celiac Disease: Why You Must Depend on Yourself to Be Healthy

Below is an important letter by Cleo Libonati, celiac disease author and speaker. She explains why you must be your own health advocate if you wish to be healthy and receive optimal care.

Dear Friend,

For the past three years, I have met with HMOs, pharmaceutical companies, politicians, doctors, dietitians, celiac support groups, and patients across the United States. One thing is abundantly clear. Doctors are not recognizing celiac disease and do not realize how little they know about the disorder.

In 2004, the National Institutes of Health called for education of physicians and other healthcare providers about celiac disease. To date, few efforts have been undertaken and none has succeeded.

The result is missed diagnoses, inadequate follow-up, unnecessary surgeries, improperly prescribed medications and needless pain. During my presentations, I meet many people who think they are receiving good treatment and cannot understand why no one has told them their persisting symptoms are due to simple nutrient deficiencies. Read More »

The News Media, Gluten Free Diet & Educating Yourself to be Healthy

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Have you ever wondered how reliable the news you see on the television really is?

Now I know first hand that the media does not always get it right and can even leave out the most important news of all.

Let me tell you how …

ABCGLUTENFATFor the last five years, I have worked to educate people about celiac disease and gluten sensitivity. I developed a website called Glutenfreeworks.com, which has helped tens of thousands get well and stay healthy living the gluten-free lifestyle.

I also edited and published the groundbreaking work, Recognizing Celiac Disease. This medical reference, authored by Cleo Libonati, RN, BSN has set the standard for identifying symptoms and their causes.

People use Glutenfreeworks.com every day to find new gluten-free recipes, how to get diagnosed for celiac disease, which restaurants serve gluten free food in their area and where to find information on local support groups. Our symptom guide, first published in Recognizing Celiac Disease, contains over 300 signs, symptoms, associated disorders and complications. From nutritional information to in-depth reviews of gluten disorders and the gluten-free diet, Glutenfreeworks.com provides medically accurate information to help patients and health professionals alike.

Last week I was given the opportunity to talk to ABC News in Philadelphia about gluten sensitivity, the gluten-free diet and how people’s lives are being affected by gluten.

When I sat down with ABC for a 20 minute interview on gluten sensitivity we discussed the following: Read More »

Gluten Intolerance Validated by this Popular Doctor and Author

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As common at they are, gluten allergies and elimination diets are still, many times, viewed as fringe alternative health practices and often don’t receive the mainstream validation they deserve. When some estimates show that nearly 1 in 30 people suffer at the hands of gluten, one would think the intolerance to this protein would finally gain more acceptance in mainstream medicine and media. One man, doctor and author Mark Hyman, is working to do just that.

HymanHyman, an M.D. in the field of functional medicine, pioneers techniques that aide the chronically-ill in improving their health and quality of life by determining the underlying causes of illness and treating according to those causes, as opposed to much mainstream medicine that focuses on treatments that champion subsistence and reliance on a medication. Doctor Hyman is a blogger for The Huffington Post and in a recent article, cites gluten allergies and Celiac Disease (even latent Celiac) as the cause for many ailments and conditions never previously associated with the grain protein. Read More »

How Blood Tests for Gluten Sensitivity & Celiac Disease Actually Work

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.

Celiac Disease Alert: Six Ways Gluten Can Kill You

“I only cheat once in awhile. You know, like twice a week…”

Photo: Suite101.com

If you have celiac disease, you damage your body EVERY TIME you ingest gluten. That may sound bad, but it gets worse.

You can DIE from celiac disease in a variety of ways. None of them are fun. Some take longer than others. Some may not kill you per se, but rather they may stop you from enjoying life, make you suffer from chronic pain or limit your potential.

Celiac disease is a deadly serious condition caused by eating what is essentially a poison to susceptible people – gluten proteins in wheat, barley, rye and oats.

Here are just 6 examples how celiac disease from gluten ingestion can kill you: Read More »

Can a celiac disease book save a life? A story how this one saved seven…

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…

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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. Read More »

Greater Philadelphia Celiac Support Group Meeting October 16

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The Greater Philadelphia Celiac Support Group is meeting at Abington Hospital this Friday, October 16 at 5:45 pm.

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Ann Whelan, publisher of the popular magazine Gluten Free Living will be speaking to the group.

Location: Abington Memorial Hospital
1200 Old York Road
Abington PA 19001 in the Lenfest Auditorium

Time: Doors open at 5:45 for visiting vendors and interacting with friends. Meeting officially begins at 7:30 pm.
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VENDORS THAT WILL BE ATTENDING THE MEETING Read More »

Celiac Sprue Association Announces 32nd Annual Conference Oct. 30-Nov. 1

CSA Logo_180x173The Celiac Sprue Association 32nd Annual CSA Conference will be held at Erie, PA from Oct. 30th through Nov. 1, 2009 at the Sheraton Erie Bayfront Hotel and the Bayfront Convention Center.

Serving as local hosts are the members of CSA Gluten Free Erie, PA Chapter #135.

Under the 2009 theme of “Research, Education and Support,” the 2009 CSA Conference features over 15 speakers including leading experts in the field of celiac disease, a conference exhibit hall featuring a variety of exhibitors to assist individuals with celiac disease, networking through the “Making a Difference Forum,” cooking demonstrations, youth and young adult programs, an historical tour of Erie and an “Oktoberfest Buffet.”

The CSA Conference is an excellent opportunity to meet and communicate with the leadership and elected CSA representatives, as well as share and learn from other individuals and families dealing with celiac disease.

The 4th Annual CSA Dietitian Day will precede the Conference, scheduled for Oct. 29th. At the conclusion of Dietitian Day, participants will be able to:
1. Describe the pathophysiology of celiac disease
2. Define medical nutrition therapy for celiac disease
3. Identify at least two management strategies for celiac disease
4. Describe the relationship between type 1 diabetes mellitus and celiac disease

Continuing education units are available.

The Celiac Sprue Association®, the largest non-profit celiac support group in the United States, is committed to helping individuals with celiac disease to live well through one-on-one support and the latest research-based and medically approved information to help them manage their health.

For more information on the CSA Conference contact the CSA website, contact CSA toll-free at (877) CSA-4-CSA (877-272-4272) or email CSA at celiacs@csaceliacs.org.

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Can celiac disease be mistaken as autism? A boy whose “autism” was cured.

A five year old Canadian boy, diagnosed with severe autism, was cured when the true cause of his mental disorder was found to be celiac disease and he was treated with a gluten-free diet and nutritional supplements.

Photo originally posted to Flickr as "Jack"

Photo originally posted to Flickr as “Jack”

His autism was cured because he was never really autistic in the first place. He had celiac disease, an immune response to wheat, barley, rye and oats that damages the intestines leading to malabsorption of nutrients.

Gluten-restricted diets have become increasingly popular among parents seeking treatment for children diagnosed with autism.(1)

What if certain children who are diagnosed with autism actually have celiac disease?

Neurological disorders stemming from celiac disease have been widely documented in medical literature. Some of these conditions include poor balance, tremors, migraines, chronic fatigue, schizophrenia, epilepsy, apathy, depression, insomnia, behavioral disorders, inability to concentrate and anxiety.(2)

Many of these issues are due to nutritional deficiencies resulting from the intestinal damage that celiac disease causes. If caused by celiac disease, they improve once gluten is removed from the diet and the intestine heals and functions properly.

Genuis and Bouchard, researchers at the University of Alberta, recently published the case of the 5-year-old boy who had been diagnosed with severe autism at a specialty clinic for autistic spectrum disorders. After an initial investigation suggested underlying celiac disease and varied nutrient deficiencies, a gluten-free diet was instituted.(1) His diet and supplements were adjusted to secure nutritional sufficiency.

The patient’s gastrointestinal symptoms rapidly resolved, and signs and symptoms suggestive of autism progressively abated.(1)

This case is an example of a common malabsorption syndrome (celiac disease) associated with central nervous system dysfunction and suggests that in some cases, nutritional deficiency may be a cause of developmental delay.

Genuis and Bouchard recommended that all children with neurodevelopmental problems Read More »

Celiac disease symptoms: Gluten Free Works Symptom Guide

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Celiac Disease Symptoms: The Gluten Free Works Symptom Guide

Could my symptoms be related to celiac disease?

This is a common question people ask in the face of a bewildering array of possible celiac disease symptoms. The Celiac Disease Symptom Guide will help you identify possible symptoms and health problems that you can present to your doctor.

Here is the list of over 300 Signs, Symptoms, Associated Disorders and Complications directly or indirectly resulting from celiac disease.

Gluten Free Works, Inc. was the first organization in the world to publish this information in its comprehensive book, “Recognizing Celiac Disease.” This list is now being used by celiac disease centers, national celiac organizations and health organizations worldwide. Read More »

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