Hey Liver, Why Are You Upset With Me?

I have a horrible habit of not keeping up with new posts, and for that I apologize.  I will not promise it won't happen again, and I would almost go so far as to say that I promise it will happen again...  Living with chronic illnesses has taught me the greatest life lesson, and that is to live in the present.  I take the good days when they come, and crash on the bad days knowing it's not the end of the world.  I started a new job a few months back, and I absolutely love it.  Much less stress than my previous job, which was contributing to increasing numbers of bad days.  I loved my old job too, but sometimes you have to find something that you and your body can love equally.  And, while I tried to use mind over matter, my body has a habit of winning because it just stops working!  So, career change (for the time being), better health, happier Kate.

As you may know from reading older posts, in addition to having Celiac Disease, I also have Crohn's Disease.  It's a "special" combination.  Dealing with Celiac is nothing in comparison to the Crohn's.  But the Celiac is probably the reason why my Crohn's doesn't stay in control for more than a few months at a time.  They feed off each other.  While I'm 100% gluten-free,  (Gluten-containing foods rarely even enter my house!) my innards were pretty damaged from years of living undiagnosed and attempting to soothe my upset insides with the typical plain pasta and toast and other things that I now know are poison.  So, even though I never "cheat" (really who in their right mind would ever intentionally cheat on a gluten-free diet?), I probably will never fully heal because of the Crohn's & its inflammation.  This is all to say that the medications that typically would help someone with Crohn's have trouble with my body because of the malabsorption.  So, I've been on immunosuppressants for over 5 years now--with the occasional addition of prednisone.

Immunosuppressants are interesting, because I rarely notice if I have a cold.  We know when we have a cold because of our immune systems' response, which are what produces the symptoms that help to rid the body of the invading germs.  When your immune system is suppressed, it doesn't react as much, which means that instead of getting colds more often, you get them less often because you just aren't bothered by the sneezing and runny nose and coughing.  Tired though? Yes.  I mean, the body is being attacked without proper defense -- of course it would be tired.  When I get sick, it just takes longer to show up if it doesn't fizzle out first on its own.

What's amazing though, is that if I do end up sick, it almost always hits my liver.  I have been trying to figure out why this is the case because it's really frustrating to have a cold and then have horrible pain spasming from my liver.  That's not what most people get with a cold.  Trust me, I've asked.  Since I can't take cold medicines, I think it has something to do with the fact that I drink more tea that contains several ingredients which are also used to promote liver detox and my liver is reacting like, "Hey, why now? I'm trying to exist peacefully while there are battle raging throughout the rest of you, and you're going to disrupt me?"  (Yes, all of my organs talk to me.  If you have chronic illnesses, you probably know what I mean...)  For now, that's what I'm going to give myself as the reason for the liver pain.  If I come up with a new theory, I'll let you know.  My doctors don't know why either :-)

Here's To Good Health!
Kate

Making Tracks Round-up

This past weekend I participated – or rather waddled since I’m seven months pregnant – in the 9th annual Making Tracks for Celiacs 5K/10K. Because this was my first Making Tracks event, I wasn’t exactly sure what to expect. As I waited in line to register – quite a few of us registered the morning of the race -- I chatted up several veteran participants and learned that this year seemed to draw an even larger crowd than past years. One thing I noticed was the number of kids there, and the significant distances many of their families had traveled for the event.

From the results tally, it appears that more than 500 runners and walkers participated. Impressively, the Making Tracks website says over $37,000 was raised. Proceeds help support the programs at the University of Maryland’s Center for Celiac Research (several other cities also have their own 5K’s in conjunctions with Baltimore’s).

As for the race itself, I got a kick out of many of the t-shirts in support of ‘silly-yaks’ and ‘gluten-free cuties’ that I passed (or rather, that passed me). I also enjoyed checking out the Canton waterfront and Patterson Park.

But of course, my favorite part had to be all the gluten-free goodies at the end. I started with powdered doughnut holes from Celiac Specialties, then enjoyed a bagel from Against the Grain Gourmet, nibbled on a mini blueberry muffin made with Jules Gluten Free flour mix, snuck a black and white cookie from Katz’s gluten free and savored a pastry from Tenzo Artisan bakery. It was decadent and gluttonous, but I am eating for two -- something a few generous vendors noted as they gave me seconds.


See you out there next year!
Christine


Making Tracks for Celiacs: Celiacwalk.org

Some of my favorite vendors:

• celiacspecialitiesshop.com
• againstthegraingourmet.com
• Julesglutenfree.com
• Katzglutenfree.com
• tenzoartisan.com

The Gluten-Free Diet and The Autism Spectrum

So, here's something that I've been wanting to write about for quite some time now.  Unfortunately the post-it note that the memory had been stored on must be lost under my stack of "post-it memories".  Fortunately, I was watching the show, Parenthood, on NBC last night and I was reminded about my plan to discuss:  The Gluten-Free Diet and The Autism Spectrum.

As many on the gluten-free diet are noticing, our food is in the spotlight -- We are on the diet because of Celiac Diesease.  The gluten-free diet has also been shown to be an effective intervention for those on the Autism Spectrum and many other diseases and disorders.  For the purposes of this post, I'm going to stick to providing resources that discuss the relationship between the gluten free diet and Autism/PDD.

According to one theory, some people with autism and PDD cannot properly digest gluten and casein, which form peptides, or substances that act like opiates in their bodies. The peptides then alter the person's behavior, perceptions, and responses to his environment. Some scientists now believe that peptides trigger an unusual immune system response in certain people. Research in the U.S. and Europe has found peptides in the urine of a significant number of children with autism. A doctor can order a urinary peptide test to see if proteins are being digested properly. (AutismWeb)

...[M]any families report that dietary elimination of gluten and casein has helped regulate bowel habits, sleep, activity, habitual behaviors and enhance overall progress in their individual child. No specific laboratory tests can predict which children might be observed by their families to have a positive response to dietary intervention. For that reason, many families elect a trial of dietary restriction with careful observation by the family and intervention team.  (Autism Speaks)

As someone with Celiac Disease and Crohn's Disease, I am well aware of the difference between a treatment and a cure.  The gluten-free diet is a treatment.  It doesn't work like antibiotics in ridding the body of bacteria.  Cheating on this diet doesn't mean a potential for a few extra pounds; it means the return of all the symptoms and possible harm to the body's digestive tract.

The gluten-free diet won't cure Autism, but it has great potential to be a leading treatment.

*Postings on this site are purely for informational purposes and do not claim to be diagnostic in any way, shape, or form. 

Cookbooks Can be Fun

Generously posted to our blog by Mikki Black

(http://hereswhatletsdo.blogspot.com)

Recently, I was contacted in regards to a new cookbook: Gluten Free Every Day by Chef Robert Landolphi.  Would I like a free preview copy?  No strings attached.  Feel free to write about it on your blog, but you don't have to.  um... .... ... YES!

Shortly thereafter, the book arrived, and I began to read.  Turns out it's not just a cookbook.

The whole first chapter, "Gluten Free Basics", is informative.  Each successive chapter begins with a quick breakdown of what you need to know to cook the type of food in that chapter.  Some of these informational segments are just a few sentences, and others, such as chapter three: "Entrees", for example, you get a two page list of possible coatings to replace the traditional flour breading. (THANK YOU!)

I wish I had had this book last year when I was first diagnosed.  I didn't know which way to turn, and it seemed that almost all the books I came across were either way too organic or too gourmet for my tastes and style (or they just had awful foods! Bleah.)

This book is excellent for someone who is just starting out.  It's easy to read and it does not contain the words "for dummies" (for me, this is super-important).  It's also a fairly versatile book.  It has recipes that would appeal to a variety of people:  Here's a short list of some of the items it contains:

• Beer-Battered Onion Rings (super yummy, and a little spicy)
• Baked beans
• Cranberry-Hazelnut Rice Stuffing
• Shrimp and Vegetable Pad Thai
• White Chicken Chili
• Ricotta Cream Berry Trifle
• Parmesean-Pesto Chicken with Pecans

Whether you're just starting out on your gluten free life or you've been at it a while and are just looking for something new and interesting, this is a good book.  I hope you like it as much as I do.

Take Action: Educate & Advocate for Celiac Disease

As we head into the final days of May, we here at Gluten Free in Baltimore would like to urge you to Take Action!

To meet the needs of patients with celiac disease Congress needs to know how many Americans have the condition.  What else?  They need to know the symptoms and treatment and the concerns or problems affecting those with the condition.  In just 60 seconds, you can give this important information to your Representative.  Educate and Advocate --  Do it TODAY!

Celiac Controversy

May 4th has come and gone.  "What?" You ask was so special about May 4th? (Reminder).

Controversy is surrounding Elisabeth Hasselbeck's new book The G-Free Diet: A Gluten-Free Survival Guide  (Click Here to Read an Excerpt).  To look at the book in depth, we suggest a trip over to its website.  We're going to leave it up to you to decide how you feel about this book, and would love for you to comment.  Below you will find several viewpoints so you can piece together your opinion.  

From Gluten-Free Bloggers:

• The Crispy Cook
• The Savvy Celiac
• Strawberries are Gluten Free
• Sure Foods Living

Book Reviews from Paid Editors and Unpaid Readers

• Ali M. Shapiro, a reader from Philadelphia
• Nancy Franklin, a reader from Kentucky
• Nancy Lapid: About.com
• Nutrition Unplugged
• People.com

From the Medical Community:

Celiac Colleagues:

I am writing to call your attention to the current publicity surrounding the new book, The G-free Diet:  A Gluten-Free Survival Guide by Elisabeth Hasselbeck, co-host of The View.  While it is important to call attention to celiac disease, the information must be accurate - the inaccuracies in this book are potentially dangerous and detrimental to celiacs and to those yet to be diagnosed if people self diagnose and start eating GF.  Our mission is to assist in getting people accurately diagnosed and the message in this book could defeat this mission.  It appears that this book is being marketed as a fitness diet - eat g-free and feel so much better.  Celiac is incorrectly referred to as an allergy not an autoimmune disease.

The GF diet is the medically mediated prescription that controls the condition for a diagnosed celiac.  Several items in the book are misleading and inaccurate and place further limitations on the GF diet.  The gluten-free lifestyle is a lifelong commitment for the diagnosed celiac, not an option, not a fad diet - adhering to the GF lifestyle requires patience and persistence.  This lifestyle can not be trivialized.

Thank you.

Elaine Monarch

Founder & Executive Director

Celiac Disease Foundation

Elizabeth Hasselbeck discusses G-Free on Good Morning America:

So what do you think?

A new gluten-free read: “G free diet”

There’s another book about to hit store shelves on the topic of living the (good) gluten-free life, “The G free diet: Gluten-free Survival Guide.” This time it’s penned by a celiac celebrity: Elisabeth Hasselbeck, View co-host and former Survivor: Outback participant.

According the publisher this “all-inclusive” book covers topics like creating “G free” shopping lists, reading food labels and managing “G free” living with family and friends (who are presumably gluten-eaters). I’m interested in the latter issue. I still find it clumsy and awkward to deal with family gatherings and holidays where gluten is the centerpiece.

“G free diet” comes out May 4.

Costly Crackers

Anne R. Lee, a nutritionist who specializes in celiac disease, published a research paper in the Journal of Human Nutrition and Dietetics in 2007 on the topic of the price of gluten-free foods.  To sum up her research in just a few words:  the gluten-free diet is pricey.  On average, specialty gluten-free foods (bread, pasta, cereal, waffles, cookies, crackers, pretzels, pizza, cake) cost two to three times that of their conventional counterparts.  While Lee found that across the board every gluten-free product costs more than wheat-based ones, the most expensive gluten-free product costs more than wheat-based ones, the most expensive gluten-free items she surveyed were "snack" foods: crackers, cake, pretzels and the like.

Interestingly, Lee examined the cost of gluten-free foods in five different geographical regions (New York City and its metro area; Portland, Oregon; Atlanta, Georgia; Rapid City, South Dakota; and Chicago, Illinois) and in four different types of stores (regular grocers; upscale grocers; health food stores; and internet stores).  Lee found that in general, geographic location didn't affect the cost of gluten-free foods as much as type of stores.  Online shopping was the most expensive, though it offered the best selection, while regular grocery stores were, not surprisingly, the cheapest (and the most limited in selection).

Notably, gluten-free cereal was one food item Lee surveyed that was relatively close in cost to conventional cereal.  But instead of being a bright spot for gluten-free shoppers, it probably points more to the fact that cereal in general is an expensive purchase.

It remains to be seen if the projected growth in the gluten-free marketplace meaningfully affects prices.  According to Lee's research, the cost of gluten-free foods would have to come way down to match their wheat-based counterparts.  And Lee cautions that for some, the prohibitive cost of gluten-free foods could be a barrier to dietary compliance.

Lee, AR et al. (2007) Economic burden of a gluten-free diet. J Hum Nutr Diet 20 pp 423-430.

Is One Sex Spared?

Is gluten the enemy to more women than men?

At celiac disease support groups, it's perfume, pumps, and purses that tend to dominate the room.  The various celiac books and blogs out there sound decidedly feminine with names like "Gluten-free Girl" and "CeliacChicks."  And the scant few celiac celebrities are all women:  CNN's Heidi Collins, the View's Elisabeth Hasselbeck, and former Massachusetts Lieutenant Governor, Jane Swift.  So, it begs the question, are celiac men simply less interested in participating in support groups and penning books about celiac, or are there just fewer of them?  Is celiac disease really a predominately female condition?

The research seems to suggest as much.  Two studies, one from Italy and the other from Spain, retrospectively examined hospital records of patients diagnosed with celiac and found that it was diagnosed two and four times as often in women, respectively (1, 3).  Dr. Peter Green of the Columbia Celiac Disease Center reports a similar figure from his research, finding that more women have celiac at a rate of about three to one (2).  This estimate is consistent with other autoimmune diseases like type-1 diabetes, thyroiditis, lupus, and rheumatoid arthritis, which when averaged together, tend to affect women more often than men roughly three times to one (2). 

But, that said, men don't necessarily have it easy.  According to Dr. Green, men with celiac may have more severe manifestations of the disease.  He found that at diagnosis, men may experience worse malabsorption than women, evidenced by their slightly lower cholesterol levels and lower bone density (2).

So while more women may suffer from celiac, men may actuall suffer more.  But for both the sexes with celiac, gluten is a formidable enemy.

Bardella, MT, Fredella C., Saladino V., Trovato C., Cesana BM, Quatrinin M., Prampolini L. Gluten intolerance: gender-and age-related differences in symptoms. Scand J Gastroenterol. 2005 Jan;40(1):15-9

Green, Peter HR. Celiac Disease: A Hidden Epidemic. New York: Harper Collins 2006.

Llorente-Alonso MJ, Fernández-Acenero MJ, Sebastián M. Gluten intolerance: sex and age-related features. Can J Gastroenterol. 2006 Nov;20(11):719-22

Are You Absorbing This?

Dear Gluten-Free Brain,

You are feeding me the right foods -- no wheat, oats, barley, or rye.  I'm feeling better, slowly.  The brain fog has disappeared, and those stomach pains have settled down.  The bloating, cramping, and other problems "down there" are almost gone too.  But, the exhaustion is just not going away.  Tired.  So tired.  Please help.

Yours truly,

Your digestive system.

Dear Digestive System,

I just learned that, while I am abiding strictly to the gluten-free diet, my insides have not healed completely.  The little villi that help absorb all those good nutrients have not yet regained their full capacity.  The longer I remain gluten-free, the greater the chance of regaining all the villi.  I know that cheating on this diet is not even an option because that's almost like saying "I think I want to kill some villi today."  But, now that I know I can't just go gluten-free and be good as new, I will work harder.  I will add in some extra vitamins and other nutrients to help you along in your healing process.  I will ask my doctor about taking supplements for a little while, at least until most of your villi return.  I'll avoid dairy for the time being because I know that can be really tough on those tender little villi that are so necessary.  In the future, I'll eat ice cream and have milk on my cereal, but for right now, I'll give you a fighting chance.  I will make sure that I haven't developed some other mild intolerances -- like to corn or eggs -- that might be causing you exhaustion.  Those intolerances will go away in time as well, but if I have to avoid these foods to help you out, I will.  I'll also double check any skin lotions I use that may have gluten in them.  And, we'll double check any issues of cross-contamination.  I know you and I work closely together, so whatever I can do to help you out, just let me know.  We'll get through this together:  you and me.

From my heart,

Your Brain

2009 International Walk for Celiac Disease

Start stretching because on Sunday, May, 3, 2009, Baltimore will host the International Walk/Run for Celiac Disease.  This is a great event that has raised over $1,500,000 since the first walk eight years ago. 

Click Here to Register as a Participant.

Click Here to Register as a Volunteer.

Click Here to Sponsor a Participant.

Still not sure if you're interested?  Look at the incentives offered:

• T-shirt to all entrants and volunteers
• Water and time splits on 5K and 10K courses
• Gluten-free refreshments and vendor fair after the race
• Special children's activities also after the race
• Silent Auction
• Raffle for a variety of prizes (tickets on sale at the event).

*Thank you to "Anonymous" for the date correction!  (The link to the official site has the date listed incorrectly.)

A Great Website To Use

Ok, while I'd rather have you hang out here, there's another great website that I cannot keep to myself!  The Gluten Solution,  http://theglutensolution.com  is in a test stage right now, and personally, I think it's going to be a great resource.  I have nothing to do with it, but the more people they have testing it out, the better it can become.  Since it's in a test stage right now, everything is free (and there are still quite a few pieces to the site that aren't fully up and running...).  The more resources we have, the better.  And, in addition to the resources, the sheer number increases the visibility of celiac disease in the world.  

October is Celiac Awareness Month, and while it's not necessary to have Celiac Disease and need to be on a gluten-free diet, we now have our own month!

A Video Presentation on Celiac Disease

For those of you who don't know the ins-and-outs of Celiac Disesase, the following presentation is fairly easy to follow.  I will be including more of these in the coming weeks to be used as a tool to explain to others as well as to understand it more fully yourself.

You Know You Have Celiac Disease If...

• You don't remember what crackers are supposed to taste like.
• You bring "special" beer to the party, and don't share.
• You actually have had nightmares about reading labels.
• You actually have had nightmares that you ate something with gluten in it.
• You compare all of your food to "normal-people-food"
• You know that Xantham Gum is not for chewing.
• You don't lick stamps or envelopes.
• You can easily substitute your bread for a brick or doorstop.
• You burst into tears of relief at the sight of the words "gluten free" stamped on the package of any "normal-people-food" (Like Nestle Hot Cocoa Mix)
• You forget to buy buns, rolls, breads, etc... at the store for all the gluten-eaters in your family.
• You can find "hidden gluten" in food labels in the blink of an eye, even when your family couldn't find them if they had a magnifying glass and dictionary.
• You, at one time, thought you had to accept that cardboard probably tastes better than gluten-free sugar cookies.
• You've installed floor-to-ceiling bookcases in your bathroom.
• You've ever driven more than 40 miles to buy gluten-free prepared food.
• You've ever had to take out a loan to pay the grocery bill.
• You've disinherited loved ones for putting their gluten-covered knife in your mayo or peanut butter jar.
• You've brought a suitcase full of food with you when traveling.
• You've mastered saying "I actually enjoy MY food" without having your face twitch
• You hide the gluten-free cookies when guests come over, so they don't eat them.
• It drives you crazy when someone says they completely understand your "diet" because they did Atkins

Courtesy of: Amanda Elizabeth Baseman