Is a Celiac cure in our future?

A number of articles popped up in my Google reader today about a vaccine for Celiac Disease. It looks like a major biotech company has secured $20 million to research Celiac Disease, create a development plan, and start clinical trials as soon as next year.

ImmusanT is "an early stage biotechnology company focused on developing a treatment, and a set of diagnostic and monitoring tools to manage patients with celiac disease." Their approach to treating Celiac Disease is based on immunotheraphy which will make gluten ingestion tolerant in a Celiac patient.

This all sounds really interesting to me, but I am still unsure how I feel about taking medication to eat food that I have avoided for 30 years. I definitely do not plan on participating in the clinical trial, but I am very interested to see how this research pans out over the next few years.


ImmusanT Raises $20 Million in Series A Financing to Advance Immunotherapeutic and Diagnostic for Celiac Disease
ImmusanT, Inc. announced today it has raised $20 million in Series A financing from Vatera Healthcare Partners LLC to advance development of the biotechnology company's immunotherapeutic vaccine Nexvax2®, companion diagnostic and monitoring tool for celiac disease. The proceeds will fund the Nexvax2 therapeutic and diagnostic development plan to the point of demonstrating proof-of-concept. ImmusanT expects to initiate the next clinical trial in early 2012.
Read the full press release here.

Biotech Secures $20 Million in Early Stage Financing
ImmusanT Inc. in Cambridge, Massachusetts has received $20 million in early stage financing to develop its therapy and diagnostic tools for celiac disease. The funds from venture capital firm Vatera Healthcare Partners LLC are expected to support further research and development of the company’s Nexvax2 therapeutics and diagnostics to a proof-of-concept demonstration.
Read more...

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In other news:

Avaxia Biologics is Awarded Patent for its Proprietary Orally Active Antibody for Celiac Disease
Avaxia Biologics, Inc., a privately-held biotech company developing oral antibody drugs that act locally within the gastrointestinal tract, announced today that the company was awarded U.S. Patent 8,071,101, "Antibody Therapy for Treatment of Diseases Associated With Gluten Intolerance."
Read more...

Alvine's ALV003 Named a Top 10 Inflammatory/Autoimmune Project to Watch by Windhover for a Rare Second Year
Alvine Pharmaceuticals, Inc., a biopharmaceutical company focused on the treatment of autoimmune and gastrointestinal diseases, announced today that the company's lead therapeutic product candidate for celiac disease, ALV003, has been selected by Windhover and its advisors as one of "The Top 10 Inflammatory/Autoimmune Projects to Watch in 2012." This is the second year that ALV003 has been named to the Top 10 list. Windhover is a leading provider of business information to senior executives in the pharmaceutical, biotechnology and medical device industries. Alvine has been invited to present at Windhover's Therapeutic Area Partnerships Conference on December 1, 2011 in Boston, MA.
Read more...

A Thank You to my Doctor

Thirty years ago, I was a very sick little girl. My pediatrician had no clue what was wrong with me and my parents felt helpless. The pediatrician told my parents it could be various things, from irritable bowel to giardia, based on my symptoms. In early 1981, I started seeing a pediatric gastrointerologist on Long Island. I spent close to a week in the hospital and went through a battery of tests, eventually diagnosed with Celiac Disease. My dad slept in the chair next to my bed while my mom went home to take care of my baby sister. By the end of that tumultuous week, my life was forever changed by a doctor who had only finished his residency the year before my diagnosis!

As my thirtieth year of living with Celiac Disease comes to a close, I wanted to reach out to my doctor and thank him for truly saving my life. I sent him an email yesterday to thank him for diagnosing me and treating me so early on in my life. My last visit with him was probably 20 years ago, so who knows if he even remembers me. On average, it takes 11 years to get a diagnosis; with this doctor it took us less than 4 months to get a diagnosis. I feel that my life would be completely different if this young doctor hadn't been diligent, progressive, and caring enough to not let me leave the hospital without a diagnosis. For that, I am forever thankful.

Thank you Doctor Jim!

That Girl

Have you seen this video about Celiac Disease yet? It has been floating around the Internet within the gluten-free community for a couple of weeks now. It is a very real and emotional account of what it is like to live with Celiac Disease. As a life-long Celiac, I can relate to so much of this video and I am sure you can too. I tried reaching out to the student producer from UC Berkeley via Facebook to thank her for putting this together but haven't heard back yet. It is worth the watch and worth sharing with people that just don't get Celiac Disease.

That Girl
by Candice Bonaduce

South China Morning Post: No Grain, No Pain

A few weeks ago Jennifer, a former colleague of mine, called me from Hong Kong to do an interview about Celiac Disease for the South China Morning Post. I was very intrigued by this interview because I wanted to learn more about the prevalence of Celiac in Asian countries. I chatted with Jennifer for close to an hour and gave her my run down of Celiac Disease over the past thirty years.

Much to my surprise, my friend Jill (owner of Glow Gluten Free) emailed me yesterday with the article which was sent to her by someone in her family living in Hong Kong. This was another example of the power of the Internet and the truly global community we live in.

Here's the article:

No grain, no pain

Gluten intolerance is most often associated with a Western diet. But a study has found the condition may be on the rise in Asia owing to a change in eating habits

Jennifer Huang (healthpost@scmp.com)  Jul 19, 2011

Bread is said to be the staff of life. But if you happen to be among a small but growing number of people diagnosed with coeliac disease, a severe form of gluten intolerance, it can make you very sick.

Click here to read more

Mold, Interrupted: My "Celiac" Diagnosis

As some of you might have noticed, my blogging hasn't been as frequent as it usually is. This is because I've been sick literally since for 4 and 1/2 months. It all started with a round of bronchitis towards the end of February with about one week of reprieve only to get sick again... and again... and again. I was having really bad asthma issues and felt like I was constantly gasping for air. I've grown up with asthma so I know how my body feels when I am wheezing or have bronchitis, but this was different. I felt like someone was sitting on my chest 24/7. My nose was bleeding, my lungs were hurting, and my body was aching. I was just a mess.

First, I went to my doctor and was treated for bronchitis. I was back two weeks later and was treated for allergies. I went back again and was given another round of allergy meds and still had no relief so I was sent to a pulmonologist. When I made this appointment, I started freaking out. By now it was the end of March and I was scheduled to go to Prague in 2 1/2 weeks. The lung doctor scheduled me for a breathing test and my first round of lung x-rays. He also prescribed me with some heavy medications including a COPD-inhaler, a nasal inhaler, and another round of antibiotics. The breathing test and lung x-rays came back all clear. Another week and a half went by and I went back to the pulmonologist in tears asking for some relief. He put me on even more inhalers, allergy medications, and acid reflux medications and said "Take it easy in the Czech Republic." Ok, easier said than done.

At this point, I was beyond frustrated, upset, and just so confused why I couldn't get better or get a clear diagnosis. I was told I had bronchitis, allergies, pneumonia, acid reflux, and anxiety. I had absolutely no voice because the inhalers were making me hoarser than I had ever been in my life. It wasn’t sexy hoarse, it was 2-pack-a-day smokers hoarse. I couldn't work out, couldn't sleep, and was crying all the time because I just felt so sick and had no answers. I was about to get on a plane to Eastern Europe by myself and I was afraid I was going to wind up in a Czech hospital. Needless to say, I was scared.

I got to Prague and strangely I started feeling better for the first time in months. By the third day, my wheezing was subsiding and I wasn't gasping for air on an hourly basis. I was going over and over in my head about what it could be. Was it the stress of life in New York City that was making me sick? Was it something I was eating at home? Was it the construction in my apartment building??

Wait, what? Rewind. Construction started in January. I got sick in February. My landlord flooded my kitchen and bathroom in mid-February because he was too cheap to hire a plumber and he is dumber than dirt. Then, I came home to my entire apartment covered INSIDE with soot from construction at the end of February and again in March... it was starting to come together, my apartment was making me sick!

Another week in Prague and I took myself off one of the three inhalers I was on because it was irritating my throat that badly. I got home from Prague on a Thursday, had another bloody nose and pseudo-asthma attack on Friday morning, and made an emergency appointment with an allergist on Monday.

When I walked into the allergist office on April 25th he wouldn't let me talk to him for more than five minutes because I was wheezing so badly. He said "You are in distress!" I said "YES" and he hooked me up to a nebulizer for my first asthma treatment in over a year. For me, this is the only way I get instant relief. In the 15+ years I've had asthma, this was less than my tenth time of having an inhaled treatment. As my heart rate went up and my breathing started getting clearer, I asked him what was going on. He said we will find out and he gave me another 3 medications and a new inhaler. He told me that my hoarseness was from the larger particles of the inhalers and he freaked me out by asking me why I had taken all of the medicines I did to date. I said "I need to feel better and nothing was helping." I left with another script for lung x-rays (my 2nd round) and hope that the treatment would do the job. It didn't. I was back in the office for another emergency visit that Thursday and he said "one more visit and you are going to the hospital." Again, I left the doctor’s office in tears.

At the 2nd allergist visit, he did a skin test for everything under the sun. Guess what? I am allergic to everything! If you have ever had the skin test you know it is miserable. They are pricking you with allergens to see how you react and you cannot scratch anything. My skin was swelling up immediately. I was digging my nails into the palm of my hand so hard to avoid scratching that I wound up making my palms bleed. I noticed one section of my arm was swelling over my watch band. Another part on the inside of my elbow was a hive bigger than my elbow itself. This was serious.

The doctor came in and was surprised, telling me I was highly allergic. DUH! He also took out his smartphone and started documenting my skin reactions with his camera. He said that he hadn't seen anything like this before, especially with the molds.

MOLD?!?

I stopped him right there and started telling him about all of the construction going on in my building and the suspicious spots I saw under the sink. He said my building probably had black mold somewhere and this might be what is causing all of my problems. He wrote up scripts for extensive blood work including testing for mold. He then slathered me up with some mega cortisone lotion, gave me predinose for the muscle pulls in my chest from the wheezing and coughing, gave me even more inhalers and pills, and sent me on my way.

I went for blood work 5 days later and almost passed out from the number of vials they took from me. When I asked the woman what she was testing for, she said EVERYTHING! I would need to wait one more week to get my results so I left and made plans to not be in my apartment for the weekend.

A week later, I got my results. I was "off the charts" with extremely toxic levels of mold in my blood stream. I asked the doctor how this could happen and he said "You are living in a very toxic environment. If you weren't exposed to mold on a daily basis, your levels would be at zero." I lost it at the doctor's office. This was the first time someone was telling me to my face that my home of six years was making me sick. On the flip side, I was somewhat relieved to learn what was causing my illness. I asked the doctor what my next steps are and he said "Get your landlord to fix the problem or MOVE!"

I left the office feeling completely defeated. I love(d) my apartment. It was the first place I moved to on my own and I had made it my home over the past six years. I had to come to terms with the past four months being hell because of my home. I cried the whole way back to work and then it hit me.

THIS WAS MY CELIAC DIAGNOSIS.

I was diagnosed in 1981 with Celiac Disease. I was just shy of turning three years old and I remember none of this tumultuous time in my life. I was just too young and it is probably for the best that I cannot remember anything. My parents went from doctor to doctor for six months before anyone even hinted at Celiac. I know this is a short diagnosis as compared to the average diagnosis of 11 years, but when you have a small child it can seem like an eternity.

Here I am at 33, going to five different doctors, being on a whopping 14 different medications, getting x-rays twice, getting a breathing test, but all to no avail. As a blogger and the leader of the NYC Celiac Meetup group, I know all too well the hell you can go through to have someone diagnosis you with Celiac Disease. Well, I honestly felt like my life since February was hell and was all too similar to friends of mine that were looking for a Celiac diagnosis for months and even years. No doctors had answers for me and I was still sick. The similarities of my mold story to many of the Celiac stories were crazy and now I could relate to what friends went through to get a diagnosis.

Once I was told that I had toxic mold in my system, I had to come to terms with moving. I spoke to my landlord and he turned into a monster. He said I was a liar, I was crazy, and there was no mold in the building. When I showed him three obvious places, he said it was water damage. I don't know about you, but to me where there is water damage there is mold. I spoke to him once, twice, and a then a final third time. I gave him the benefit of the doubt that he would fix it. I caught him in lies and I was told the construction was to resolve the leaks from the brickwork outside the building. (Another clue that there was water issues with the building.) After three conversations, I finally called the NYC Department of Housing Preservation and Development to file a formal complaint. Interestingly, the landlord hired his friend before the complaint was issued to do an air quality test in my apartment. This was another lie I caught him in, but I won't even go there. But the air quality test didn't prove anything, nor would he give me a copy of this test. Something was fishy!

After almost 3 weeks and one failed attempt to inspect my unit (turns out the landlord denied them access for the first inspection!), the HPD inspector came to my apartment. The inspection was horrible. The landlord's father followed me and the inspector around the entire time. He kept telling me over and over that I was a liar and I should just move out. They left, I cried, the landlord showed up and started screaming at me again, and then I went to work. Another day of tears and wheezing.

By this time, I had already started the painful process of searching for another apartment in my neighborhood. I knew I wanted something close to the train, big enough for my stuff, bright, and most importantly mold-free. My arduous apartment search is a whole story in itself but let’s just say Astoria brokers suck and people live like pigs in my area. After meeting more than 20 brokers and seeing more than 40 apartments, I finally found one that was well-maintained and clean. I started the paperwork, handed over way too much money (broker fees in NYC are outrageous), and began packing up six years worth of stuff.

One week before my move, I found that the city inspector ruled in my favor that there was mold in my unit! This was a personal triumph. Even though there is a documented report of the mold and two additional violations were issued for my unit, the landlord denies there is a problem. WTF? Moving day was bittersweet because I really did love that apartment. With the landlord standing in my doorway while the hourly-paid movers are trying to get out made me realize it was beyond time for me to go. He had ample opportunity to fix the problem and he did not. I am not sad that I will never have to deal with that a$$hole again.

I have now been in my new building for 8 days. I’m not feeling physically better yet, but the allergist told me it will take time to heal and rid my body of the toxins. It is hard to say whether or not I will have any residual health problems due to the black mold, so only time will tell. The numbness in my feet has sort of subsided but the wheezing has not. I do feel better mentally, although I have one more encounter with the old landlord tonight to return my keys. I’m bringing someone with me in order to hopefully avoid confrontation.

As with a diagnosis of Celiac, I must accept that I will not heal overnight. I need to give my body time to heal and try to do things that will make me healthier. As soon as I can breathe unassisted (no daily inhalers) I am going back to the gym and getting back on my bike. By this time of the summer, I would have already completed more than 200 miles on my bike and I miss it dearly. I also signed up for Bikram yoga to get my body and my mind back into shape. Black mold is no joke and I realize how being sick for so long has basically put my life on hold. I have no energy and I am always feeling ill so my social life has really suffered. Add on top of being sick the stress of dealing with an ignorant landlord who refuses to help his tenants and I realize how harmful my living situation has been for the past few months.

I’m on the mend, ready to get my life back, and hoping for a much healthier summer.

Celiac Disease on ABCnews Health

Here is an interesting video that was posted on ABCnews Health yesterday.




Activists Protest Delayed Gluten-Free Label Standard

By JANE E. ALLEN, ABC News Medical Unit
May 4, 2011

The Food and Drug Administration has dragged its feet in setting a standard for gluten-free foods, say activists who today are assembling a one-ton, 15-foot-high gluten-free cake symbolizing how much their lives depend upon strictly avoiding a protein found in most bakery goods, pasta, beer and even some cold cuts and salad dressings.

Read on...

The Public Health Crisis No One Is Talking About

I just got back from the Czech Republic last night. I am tired but have lots I want to share with my readers about traveling gluten-free overseas. This will come in the next few days. In the meantime, I wanted to share this article that was published on the Huffington Post while I was gone. The author, Sasha Cagen, is not only a Celiac but she is a world traveler. I love these people that embrace the gluten-free lifestyle overseas! The article is well-written and the comments are quite thought-provoking. Enjoy!

The Public Health Crisis No One Is Talking About
by Sasha Cagen

Imagine there is a food additive that slowly poisons you and can even kill you. Now imagine you have no way of knowing whether it is in your foods. Three million American celiacs and I find ourselves in this situation. We have been patiently waiting for the FDA to pass a gluten labeling law while Brazil, the European Union, and Australia acted years ago.

On May 4, activists will be baking a 12-foot gluten-free cake in Washington, DC to get the FDA and Congress to take long-overdue action on this public health crisis. It's high time the U.S. caught up with the rest of the world.

Read more...

The Celiac Kid

I recently was sent a copy of a new book called "The Celiac Kid" by Stephanie Skolmoski. This is a fully illustrated book explaining what it is like to be a kid with Celiac disease. It talks about what it is like to have friends who don't have celiac, what foods you can eat as a kid with celiac, and even gives a light scientific explanation of kids with celiac disease.

I think this would be an excellent book to bring to show-and-tell in the classroom of a child with celiac disease. It would not only educate the teacher, but also give your child's class a kid-level explanation of why your child can't eat what the other kids are eating.

Although I haven't shared this book with any kid yet, I plan on reading it to my gluten-intolerant nieces and passing it along to a mom of a celiac very soon.

To learn more about this book, please visit: www.celiackidbook.com




Update: The Celiac Kid is now available at a reduced price of $6.50 (regularly $7.95) on their website. They also offer discounts on large orders.

L.A. Times Celiac Awareness Supplement

This weekend there was a really great supplement about Celiac Disease in the Los Angeles Times. You can download the whole supplement at the website Not Even a Crumb, a website run by actor Wil Wheaton's mother Deb Wheaton. This supplement does a great job interviewing a variety of gluten-free people, highlighting gluten-free products, and discussing Celiac Disease in a clear and understandable manner. Please visit Not Even a Crumb for more information and to download the supplement.

Making a Diagnosis of Celiac Disease Can Be Tricky

This article is from last month, but I thought it was worth sharing with my readers.

Making a Diagnosis of Celiac Disease Can Be Tricky : Internal Medicine News

By: LAIRD HARRISON, Internal Medicine News Digital Network
01/12/11

LAS VEGAS – New testing protocols are helping clinicians with the challenging diagnosis of celiac disease, according to Dr. Ivor D. Hill, a professor of pediatrics at Wake Forest University, Winston-Salem, N.C.

While the only treatment for celiac disease is a gluten-free diet, Dr. Hill said, the diet is expensive and imposes social costs, so it should not be prescribed lightly. "Confirm before you treat," he said.

Researchers believe the disease affects about 1% of the population. "You can expect to see 5-20 affected children in an average pediatric practice," Dr. Hill said at a pediatric update sponsored by the American Academy of Pediatrics California District 9.

Among the symptoms in young children are failure to grow, diarrhea, bloating, flatulence, abdominal distension, and transaminitis.

In older children, the symptoms are often milder and can vary tremendously. In addition to having gastrointestinal symptoms, some patients have dermatitis herpetiformis characterized by papules on the elbows, buttocks, or knees. About 10% are short of stature. Iron-deficient anemia, rickets, arthritis, neuropathy, ataxia, and other neurological symptoms all can be manifestations of celiac disease. Many children are irritable. Poor dental enamel formation that looks similar to fluorosis or tetracycline staining also can be signs of celiac disease.

Some people with the syndrome are totally asymptomatic.

Autoimmune diseases, including type 1 diabetes, thyroiditis, autoimmune hepatitis, Sjögren's syndrome, and arthritis are associated with an increased risk of celiac disease. So is IgA deficiency; a family history of celiac disease; and Down, Turner, and Williams syndromes. Whether to screen these or any other individuals for celiac disease if they are not symptomatic, is controversial.

"When it comes to symptomatic patients, there is a consensus," said Dr. Hill. "There’s a difference of opinion on testing asymptomatic patients."

In patients with typical gastrointestinal symptoms, begin with the serologic tests. While tests for the antigliadin antibody (AGA) IgG and IgA are inexpensive and easy to perform, they have low sensitivity and specificity. By contrast, the test for the IgA endomysial antibody (EMA) has high sensitivity and specificity, but is expensive, time consuming, operator dependent, and of no use in IgA-deficient patients.

Testing for IgA anti-tissue transglutaminase (TTG), on the other hand, is easier and less expensive than testing for EMA, and newer versions are now considered as sensitive and specific as EMA. But it is also of no use in the case of IgA deficiency.

A new version of the antigliadin test, using deamidated gliadin antibodies, has shown much higher sensitivity and specificity than the AGA test in recent studies (Dig. Dis. Sci. 2008;53:1582-8), but this test is still not as good as the TTG or the EMA tests, said Dr. Hill.

So he advocated a combination of TTG and serum IgA level, although EMA may work better in diabetics. There is no benefit to a panel of tests, he said.

However, he warned that all these tests are less accurate in the real world than in the laboratory. And sensitivity declines in children less than 2 years of age, so combining TTG with the newer deamidated gliadin tests might be warranted in this young age group.

If these tests are positive, proceed to biopsies, Dr. Hill recommended. Clinicians should also consider biopsies if the tests are negative but they strongly suspect celiac disease.

Another key element in diagnosing celiac disease is that patients with the syndrome will improve on a gluten-free diet. And this diet is the standard treatment. But some other possibilities have appeared on the horizon. "It’s exciting," said Dr. Hill.

Intraluminal approaches include modification of wheat protein or transamidation of wheat flour. "It’s looking promising but hasn’t been confirmed yet," said Dr. Hill.

Several digestive enzymes have been developed with the intention of digesting the proteins before they can be taken up by the intestinal mucosa. Peptide-binding agents also are being tested to prevent the proteins from reaching the mucosa.

Biological antagonists include a zonulin inhibitor, TTG inhibitors, cytokine inhibitors, and DQ2 and DQ8 inhibitors. A vaccine is in the works as well. In addition, the timing of the introduction of gluten might be manipulated to build up tolerance.

These approaches are not yet ready for prime time, leaving diet as the primary treatment. But many patients find it hard to stick to the diet. Dr. Hill advocated a self-administered questionnaire, or better yet, assessment by a trained interviewer, as well as continued monitoring through TTG testing at 3 months, 6 months, 12 months, and then annually, combined with a dietary review, to see how well the patient is adhering to the diet. Repeat biopsies should be done only in select cases.

Dr. Hill disclosed that he is a consultant to AstraZeneca.

New E-Book: Gluten Toxicity

I received an email back in October looking for gluten-free bloggers to be included in an upcoming book about Celiac Disease and gluten intolerances. Of course, I jumped at the opportunity to include Gluten-Free Fun and was excited to learn that the NYC Celiac Disease Meetup group would also be featured in the support group section of this book.

The new e-book is finally finished! It's called "Gluten Toxicity: The Mysterious Symptoms of Celiac Disease, Dermatitis Herpetiformis, and Non-Celiac Gluten Intolerance" and is now available for purchase and download at the author's website. Shelly Stuart, R.N., B.Sc.N., the author of the book said it was a "2 year project... [and] a resource to increase awareness" about gluten. With 30 chapters covering everything from types of gluten intolerances to in-depth explanation of symptoms to diet and finally support for your gluten-free lifestyle, I think this book is full information that is very helpful to both the newly diagnosed and the veteran Celiac. You can read more about Shelly below.

As I mentioned, you can order this e-book at Shelly's website. In addition, Gluten Toxicity will be available as a paperback from Amazon.com and will be available in some stores in British Columbia, Canada. Congratulations to Shelly for finishing this book and helping the gluten-free community with the new book Gluten Toxicity.

From the back cover of Gluten Toxicity:

Are you suffering from fatigue, anemia, indigestion, bowel symptoms, skin rashes, joint pain, infertility, poor bone density, headaches or other neurological issues?

These symptoms, along with many others, can be triggered by immune reactions to gluten. Unfortunately for those who are suffering, gluten intolerance is very under-recognized and under-diagnosed by doctors. Sadly, patients often suffer for decades with incomplete diagnosis and misdiagnosis.

"Gluten Toxicity" provides a comprehensive checklist of symptoms, in depth analysis of the diagnostics tests, an outline of the gluten-free diet, tips to help with a new lifestyle adjustment, and recommendations to consider when complications arise. Helpful checklists will assist the reader to keep track of blood test results, and tasks to help with healing. If you are looking for a definitive guide that provides comprehensive information about gluten intolerance, then this book is for you.

Shelly Stuart is a Celiac Nurse and Gluten Intolerance Consultant in Vancouver, British Columbia, Canada. She has been a Registered Nurse for 21 years in a variety of clinical areas, including gastroenterology and inflammatory bowel disease. Shelly and her eldest daughter have Celiac Disease, and her other two daughters have food allergies. Her extensive medical background, along with her experience as a mother, have been valuable assets in helping others with diagnosis and healthy lifestyle adjustments. Helping patients navigate the maze associated with gluten toxicity has become a way of life for Shelly.

To learn more about Shelly, please visit the following links:

Blog: http://www.celiacnurse.com
Blog: http://paleolithicrn.blogspot.com
Twitter: CeliacNurse1, PaleolithicRN, GlutenToxicity

The Balancing Act: Celiac Disease

I have been meaning to post this for a long time, but it got lost in the shuffle. Back in October, The Balancing Act on Lifetime TV did a feature on Celiac Disease. Phyllis Kessler, President of the Celiac Disease Foundation’s Florida Chapter and Dr. Matthew Bromer stopped by The Balancing Act studio to educate viewers about the signs, symptoms, and risks of the under-diagnosed disease and how it can be treated naturally.

CBS Cares: Celiac Disease

This public service announcement has recently been airing on CBS. It features Pauley Perrette from NCIS talking about Celiac Disease. Thank you CBS for taking the time to air this clip.

Research Connects Celiac and Thyroid Diseases

My sister, father, and mother are all on some kind of synthetic thyroid medication. Of those three, my sister also has been diagnosed with Celiac Disease and we both suspect my dad might have it too although he denies it. I have my thyroid tested as part of my yearly physical and although I am slightly low, my doctor doesn't feel that I have a serious enough level to go onto medications. This is fine with me, since I would rather not have to take a pill every single day. I truly believe that my thyroid condition has been kept in check over the years with a very early diagnosis of Celiac Disease and treatment through a gluten-free diet for almost thirty years.

I read an interesting article today about the connection between Celiac Disease and Thyroid Disease that I wanted to share with my readers. The article also put together a table compairing Celiac, Hashimoto's, and Graves Disease.

Two of a Kind — Research Connects Celiac and Thyroid Diseases and Suggests a Gluten-Free Diet Benefits Both
By Cheryl Harris, MPH, RD, and Gary Kaplan, DO
Today’s Dietitian
Vol. 12 No. 11 P. 52

Nature doesn’t always play fairly. Anyone with an autoimmune condition is predisposed to developing other autoimmune conditions, and there is a particularly strong connection between celiac disease and autoimmune thyroid disease (ATD), which includes Hashimoto’s and Graves’ diseases. Despite this connection, routine cross-screening is rare.

Since these conditions frequently lead to significant changes in weight, RDs are in a prime position to spot common symptoms and provide clients with potentially lifesaving referrals for further testing and diagnosis. This article will review the overlapping symptoms, examine the current research on the relationship between these diseases, explore how a gluten-free diet affects both conditions, and describe the ways in which RDs can most effectively support their clients and patients. Understanding the connection between celiac disease and thyroid disease can help dietitians design strategies for appropriate dietary management and support.

Read on...

The authors created this intersting table using information from multiple sources.

TABLE 1

Celiac Disease	Hashimoto’s	Graves’
Weight loss	Weight gain	Weight loss
Diarrhea and/or constipation	Constipation	Diarrhea
Fatigue	Fatigue	Fatigue
Hair loss (secondary to nutritional deficiencies)	Hair loss	N/A
Depression, anxiety	Depression	Anxiety, difficulty concentrating, nervousness
Joint or bone pain	Joint pain	Muscle weakness
Infertility, missed periods	Infertility, missed periods	Infertility, missed periods
Miscarriage	Miscarriage	Miscarriage

Celiac Disease: What Kids Have to Say

This video brought tears to my eyes and brought back so many memories. Being diagnosed at the age of three, this was my life growing up. Feeling different, feeling limited, not being able to buy hot lunch at school! I feel for these kids big time. I want to hug them and tell them they are lucky to be alive today with so many gluten-free options. Back in the early 1980s, I wasn't so lucky. I love the end of the video where the kids start talking about being "normal" and all of their activities.

Thank you Children's Hospital Boston for this great video!

Gluten-Free Celebrity Product Endorsement: Next Big Thing?

We all know that gluten-free foods are the trend of the moment but I am predicting the next big trend will be celebrity-endorsed, gluten-free products.

YOU HEARD IT HERE FIRST!

Celebrities are already endorsing the gluten-free diet as a "weight loss" regimen, so why not jump on that bandwagon a little bit more and make a profit off the gluten-free trend of the moment?

There are celebrities that have been diagnosed with Celiac Disease and truly need to be on a gluten-free diet. Just this week, Dana Delaney of Desperate Housewives, was featured on the cover of Prevention Magazine talking about her diagnosis and eating habits once diagnosed with Celiac. But it seems more often than not, celebrities are eating gluten-free for the wrong reasons. Do an Internet search on "celebrities + gluten-free" and you will see exactly what I mean. Count how many actually have Celiac Disease or gluten intolerance. Then count how many weigh over 100lbs and are bigger than a size 0!!

Celebrities and their products

Now it seems that being on the diet is no longer enough to be noticed. Creating your own line of gluten-free products is now the way to be in the "in-crowd" amongst gluten-free celebrities.

Although I still don't know who she is except for hottie Bradley Cooper's ex-wife, apparently Jennifer Esposito has her own line of gluten-free baking mixes. Rumor also has it that a daytime talk show host is also working on her own gluten-free goodies.

Now, Mariel Hemingway is making a new type of gluten-free snack called a Blisscuit. Apparently a Blisscuit is "neither a health bar nor a traditional cookie... Blisscuits™ are part of a new building category known as "functional food". No refined sugar – still sweet – low carbs – no wheat with a gluten free recipe – high comfort – real food and Blisscuits help to boost your immune system!"

I don't even know what "functional foods" are except for another buzz word being thrown in my face. According to Wikipedia, "Functional foods are any healthy food claimed to have a health-promoting or disease-preventing property beyond the basic function of supplying nutrients." I am sure Mariel means well, but for some reason when I got the press release yesterday announcing this new product and celebrity alliance and I was annoyed.

As many of my readers know, I have always felt that any press is good press for the Celiac Disease community. Talking about eating gluten-free, even by celebs, will clearly show there is a demand for gluten-free products. I am just frustrated by the trendiness of it all. What happens next year when gluten-free is out and functional foods are in? Does that mean the gluten-free shelves will be empty? I hope not!

To me, a gluten-free product is a gluten-free product. I won't go out and buy it just because the creator was in a movie, commercial, or on TV. If it tastes good and is safe for me to eat, I will give it a try. Good luck to those celebrities trying to launch their gluten-free products. Just do us all a favor and make your product good enough to stick around for a long while!

CDF and Chesapeake Regional Medical Center: 4th Annual Celiac Fair

Chesapeake Regional Medical Center and Celiac Disease Foundation proudly present the 4th Annual Celiac Fair

Saturday, october 16, 2010
10 a.m. - 2 p.m.

Speaker: Sheila Crowe, M.D.
The gastroenterologist from University of Virginia will speak at 11am.

Carrie Palamarchuck, a registered dietician, will be available to answer questions.

DOORS OPEN 10 AM

10 AM - Vendor area opens for information and food sampling (Vendor area will be closed during presentation)

11AM - 12 NOON -- Dr. Sheila Crowe will speak to us about celiac disease, and update us on research.

12 Noon - 2 PM vendor area re-opens after presentation.

Free Admission. Donations Accepted.
Visit www.celiacsofva.com for more information.

Giving Up Gluten to Lose Weight? Not So Fast

From today's Wall Street Journal

Diet Regimen Effective in Treating Celiac Disease, Wheat Allergies, But Not for Shedding Pounds
By MELINDA BECK

Gluten-free foods are everywhere these days—but they're much more than just a health craze.

How widespread are gluten-free foods? Citi Field, home of the New York Mets, sells gluten-free hot dogs and beer.

The bevy of new products, from gluten-free pasta to pizza and beer, are a boon to people with celiac disease, wheat allergies or gluten sensitivity who are on very restrictive diets. That group has grown dramatically in recent decades, for reasons not understood.

Are they beneficial to everyone else? Probably not.

The notion that a gluten-free diet can help people lose weight or avoid carbohydrates is a myth. "Many packaged gluten-free products are even higher in carbs, sugar, fat and calories than their regular counterparts, and they tend to be lower in fiber, vitamins and iron," says Shelley Case, a registered dietician on the medical advisory board of the Celiac Disease Foundation. "Gluten-free does not mean nutritious," she notes.

Gluten, a protein in wheat, barley and rye, is not only a key ingredient in baked goods. It's also used as a thickening agent in ketchup and ice cream. It helps ferment vinegar and alcoholic beverages. It's even in lip gloss and envelope adhesives. Some condiments, such as ketchup and soy sauce, contain gluten, a detail on food labels easy to overlook.

For people with celiac disease, ingesting even tiny amounts of gluten can set off an autoimmune reaction that flattens the finger-like villi lining the small intestine. The most common symptoms are bloating, gas, diarrhea and constipation, as well as early osteoporosis. The autoimmune reaction can also cause skin rashes, chronic fatigue, bone and joint pain, neurological problems, liver problems, diabetes, infertility in both men and women and cancers, including lymphoma. An estimated three million Americans have celiac disease—and the vast majority don't know it because it can have no symptoms or mimic other diseases.

Separately, a smaller group of people have a specific allergy to wheat; exposure can lead to rashes, asthma and even anaphylactic shock.

A third category of people—as many as 20 million Americans—appear to be sensitive to gluten without having full-blown celiac disease. For them, symptoms may be less typical, involving depression, mental fogginess, mood swings and behavior changes. Much less is known about this group.

"It's only in the last couple of years that we have realized there truly is a third condition that involves the immune system, but in a different way than a typical allergy or autoimmune reaction," says Alessio Fasano, a celiac expert at the University of Maryland School of Medicine.

Exactly how gluten sensitivity might cause psychiatric and behavioral changes isn't well understood. One theory is that some people have unusually permeable intestines—a so-called "leaky gut"—which allows gluten fragments and immune cells to escape into the bloodstream and trigger inflammation in the brain. Dr. Fasano and his colleagues also have identified a protein called zonulin that makes intestines unusually permeable. In people with celiac disease, gluten itself stimulates the release of zonulin.

Until now, gluten sensitivity was diagnosed mainly by ruling out celiac disease and wheat allergy in people with symptoms. But researchers are evaluating antibodies to gliadin, a gluten component, as a possible biomarker. About 7% of the population has these anti-gliadin antibodies (AGA); intriguingly, so do 18% of people with autism, and 20% of people with schizophrenia, according to Dr. Fasano's studies.

Few Gluten Studies

That may explain why some parents of autistic children say they have seen dramatic improvements when their children avoid both gluten and casein, a protein found in dairy products. To date, randomized controlled trials testing such diets have been small, and results have been mixed, but more research is under way.

"Some of this may be a placebo effect. But we are starting to see pieces of the puzzle that make a little more sense," says Dr. Fasano, who advises parents to have children tested for AGA before embarking on such a restrictive diet.

Indeed, experts urge anyone who has gastrointestinal problems, fatigue, diabetes, unexplained infertility or a family history of celiac disease to be tested first before attempting a gluten-free diet, since eliminating gluten in advance will affect the test results.

Blood tests for celiac disease check for AGA and several other antibodies given off when the intestine has an immune reaction to gluten.

More sophisticated tests check for one of two genetic markers—HLA DQ2 and DQ8—common to most people with celiac disease. Since about 30% of the population has those markers, the most definitive test is a biopsy of the small intestine, which looks for tell-tale damage to the villi. But the damage can be patchy, and early cases are often missed.

The incidence of celiac disease has taken a mysterious leap in recent decades. It was once thought to affect only about 1 in 10,000 Americans, but recent studies have put the rate as high as 1 in 133.

Environmental Links?

The increase can't be explained by greater awareness alone. In a novel study, researchers at the Mayo Clinic tested blood samples taken from 9,133 young Air Force recruits in the 1950s and found that about 1 in 700 had undiagnosed celiac disease at that time. Tests on subjects exactly the same age now found that the rate was nearly five times as high today.

"Human genes haven't changed that much, so there has to be something pervasive in the environment that is making this disease more common," says Joseph Murray, a Mayo gastroenterologist who led the study, published in the journal Gastroenterology last year. It may be that people are more susceptible because we are eating much more wheat today—or that wheat is being processed or cultivated differently. Autoimmune diseases in general are also on the rise.

Celiac was also once thought to only begin in childhood. But researchers now know that it can start at any time, most likely when someone with a genetic predisposition encounters an infection or some other triggering event.

"I've diagnosed people with celiac disease in their 40s, 50s and 60s," says Brian Landzberg, a gastroenterologist at New York Presbyterian Hospital/Weill Cornell Medical Center in New York.

Eating a strict gluten-free diet can reverse many of the symptoms of celiac disease and gluten sensitivity. Intestinal villi regenerate every few days. Neurological improvements and autoimmune changes can take longer. After four years on a gluten-free diet, the increased risk of cancer and other complications that come with celiac reverts to normal.

Not an Easy Eating Plan

But that can require great vigilance. "Done correctly, a gluten-free diet is a major, life-alerting change," says Dr. Landzberg. "It doesn't just mean avoiding bread and pasta. It's reading every label, and every time you go to a restaurant, giving the waiter the third-degree as to what might have been thickened with flour."

Unreliable Labels

Even then, it can be difficult to know where gluten is lurking. Lip gloss and envelopes aren't required to be labeled. The Food and Drug Administration has yet to issue final rules for what constitutes "gluten-free" so manufacturers can interpret it very differently.

Eating a gluten-free diet isn't necessarily harmful for people who don't need it—but it can lead to vitamin, iron and fiber deficiencies if they don't eat a balanced diet.

Fruits, vegetables and meat are naturally gluten-free, so experts advise loading up on those rather than relying on packaged products.

Also, for dieters, going back to gluten after avoiding it can lead to stomach cramps, bloating, diarrhea and other symptoms, at least temporarily.

Giving Up Gluten To Lose Weight?

• Cake, brownie and cookie mixes are available in gluten-free versions, but like regular baked goods, they often contain high fat and calorie counts.


• Products made from wheat, barley, rye and sometimes oats contain gluten. But other starchy foods, such as rice and cornmeal, do not.


• 1 in 133 The rate of people with celiac disease in the U.S., an increase of more than 20-fold since 1989. Sources: Archives of Internal Medicine Clinical Gastroenterology and Hepatology


• 41 vs. 46 Grams of carbohydrates in a serving of regular pasta versus grams of carbohydrates in a serving of gluten-free pasta.

Celiac Disease Diagnosis Up 4-Fold Worldwide

From Medscape Medical News
by Megan Brooks

July 30, 2010 — Studies from the United States, Europe, and elsewhere indicate that the prevalence of celiac disease (CD) has increased significantly in the last 3 decades — possibly by as much as a factor of 4.

"More and more studies indicate a prevalence of CD of more than 1% in both adults and children. This should be compared with lower prevalence figures [from] 20 to 30 years ago," Jonas Ludvigsson, MD, from the Department of Medicine, Epidemiology Unit, at the Karolinska Institute and Orebro University Hospital, Sweden, and an expert in CD, noted in an email to Medscape Medical News.

"The reason for this increase is mutlifactorial, but there is probably a true underlying increase. This has been shown when old sera have been analyzed with modern techniques, (eg, in Finland)," Dr. Ludvigsson pointed out.

Mayo Clinic Research Confirms Rise in CD

Researchers at the Mayo Clinic also report an increase in CD, according to an article in the summer issue of the Mayo Clinic's research magazine Discovery's Edge. Joseph Murray, MD, and colleagues analyzed stored blood samples, taken from Air Force recruits in the early 1950s, for gluten antibodies. They assumed that 1% would be positive, mirroring today's rate. That assumption was wrong — the number of positive results was far smaller, indicating that CD was "rare," Dr. Murray noted in the article.

This led him and his colleagues to compare those results with 2 more recently collected sets from Olmsted County, Minnesota. Their findings suggest that CD is roughly 4 times more common now than in the 1950s.

"This tells us that whatever has happened with CD has happened since 1950," Dr. Murray said. "This increase has affected young and old people. It suggests something has happened in a pervasive fashion from the environmental perspective," he added.

Excess Mortality Seen With CD and Latent CD

Recent research by Dr. Ludvigsson's team (JAMA. 2009;302:1171-1178) and others supports the concept of "latent CD" or "gluten sensitivity." Latent CD, defined in the Journal of the American Medical Association study by Dr. Ludvigsson's team as having normal small intestinal mucosa but positive CD serology, is something that is estimated to occur in at least 1 in 1000 individuals.

Dr. Ludvigsson's team has also reported evidence that in 1 year, 10 of 1000 individuals with CD will die compared with an expected 7 in 1000 without the disease.

"Not only is the mortality raised in patients with [CD] but also in those individuals with latent [CD]," Dr. Ludvigsson noted in a statement from the United European Gastroenterology Federation.

However, in comments to Medscape Medical News, he emphasized that "although patients with CD are at increased risk of a number of disorders, and at increased risk of death, the absolute risk increase is very small."

A Tricky Disease

CD remains a "tricky disease," Dr. Ludvigsson said. "It can be asymptomatic; have so-called traditional symptoms such as diarrhea, weight loss, failure to grow (in children), fatigue, and malnutrition; and have nontraditional symptoms such as osteoporosis, depression, adverse pregnancy outcome; and increased risks of both malignancy and death."

The onset of certain autoimmune disorders including autoimmune liver disease, thyroid disease, type 1 diabetes, and Addison's disease can actually signal CD, he noted. "This means that clinicians should consider CD in a number of symptoms and disorders."

CD Often Undetected; Cause Unknown

CD often goes undetected, although the percentage of undetected cases varies between countries, Dr. Ludvigsson noted. "In most countries, at least two thirds of individuals with CD have not received a diagnosis by a doctor." The reason for the high percentage of undetected disease is that the disease can be difficult to diagnose, and "it is sometimes almost asymptomatic," he added.

Detection Methods Are Improving

Over the years, Dr. Ludvigsson told Medscape Medical News, "we have improved existing means to diagnose CD. Antibody tests are becoming better and better, although a positive antibody test should be confirmed with a small intestinal biopsy before the diagnosis is certain. Transient increases in CD antibody levels occur. In the future, I expect microscopy in the very small intestine to become a tool for diagnosis."

Alternatives to the Gluten-Free Diet?

At this time, Dr. Ludvigsson said, the gluten-free diet remains the cornerstone of treatment for CD. However, "in the future, alternative treatment strategies may be available. The recent discovery of the structure of transglutaminase 2 may help in designing inhibitors of transglutaminase 2 to treat CD," he said. "Another potential treatment strategy is to ingest enzymes that digest gluten, thereby increasing the safe threshold for gluten intake.

"There is also ongoing research on the topic of decreasing the bowel's permeability to gluten, Dr. Ludvigsson told Medscape Medical News. He added, however, that the safety of this approach is unclear, as "a decreased permeability here might mean that the body cannot absorb other needed substances.

"Finally, agricultural research may mean that we can modify the gluten structure in wheat produce a kind of wheat that will not illicit an immune response in patients with CD," the researcher noted.

Counseling CD Patients Is Important

Although evidence is scarce, said Dr. Ludvigsson, "most researchers believe that a gluten-free diet will reduce the risk of complications/comorbidity in CD, and it is important for the doctor to underline this for the patients. In patients with CD who do not become better on a gluten-free diet, the most common reason is probably that the patients do not eat a strictly gluten-free diet," he said.

Dr. Murray advocates greater vigilance in CD patients. "It's not enough to say, 'You've got CD, be gluten-free, goodbye,' " he said. "CD requires medical follow-up."

This October, at the United European Gastroenterology Week in Barcelona, Spain, Dr. Ludvigsson will be 1 of 8 researchers to receive the Association of National European and Mediterranean Societies of Gastroenterology and United European Gastroenterology Federation Rising Stars award.

Using Celiac Disease as an Excuse

Shame on you Reader's Digest.

Today on rd.com, there is an article called "New Ways to Just Say No to Dessert." The author suggested to her readers one way to avoid eating dessert at a dinner party would be to suggest you had Celiac Disease to your host. WHAT?!?!

Here is the exact text from the article:

What’s a diet devotee to do when breath mints, gum, polite refusal, cleaning products and excessive condiments fail? Echlin hints at this at the end of her column when she says that the best desserts should be eaten. Why attend a dinner party if you don’t plan on eating what’s served? That said, "a host will understand if the dieter has just had triple bypass surgery or is suffering from gestational diabetes." The final way fervent dieters haven't tried is a simple way to shut people up: Chalk it up to an allergy or condition. Gluten intolerance, Celiac disease, allergies, lactose intolerance and diabetes will get you out of eating just about any dessert.

I think this is a completely asinine way for anyone to use to avoid dessert. How about simply and politely saying "no thank you" to your host? How about saying "I'm stuffed from your delicious dinner?" I can think of a bunch of other ways to avoid dessert without blaming it on a DISEASE!

As someone with Celiac Disease for over 30 years, I have spent many meals both frustrated and embarrassed when it comes to having to explain why I cannot eat something because it has gluten. To even suggest using Celiac Disease or a gluten-intolerance as an excuse just pisses me off. If everyone out there starts claiming a gluten allergy or celiac disease, it will start being like the boy-who-cried-wolf syndrome and servers and hosts will roll their eyes about being picky eaters even more than they do to us right now.

What do you think, dear readers? Tell me in my comments section what you think about this suggestion. Also, don't be shy and tell RD.com what you think on their page as well. I made sure to let Reader's Digest know exactly how I feel about this suggestion in their comments section. I was not letting this pass me by without butting in with my two cents.