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I was doing some research tonight when I stumbled upon what I consider a most disturbing celiac-related confession on a website that appears to highlight anonymous revelations. The title was I’m Dying and I’m 19…

“I have Celiac Disease and even though I know it’s killing me I still eat and use products containing wheat and flour…I don’t know how to stop doing this to myself and apparently death isn’t good enough reason for me to quit : / I have also recently been diagnosed with cancer and had surgery to remove it and my appendix where it was found.” — Anonymous on experienceproject.com

The skeptical news person in me questions how realistic the preceding “confession” is, but whether it’s real or not, I believe the idea of non-adherence to the gluten-free diet is a real issue and deserves some space on this blog. So allow me to use it as a launching point for a serious discussion.

Sticking and not-sticking with the gluten-free diet

Just last month on Celiac.com a woman started a thread which said on occasion she just couldn’t “stop binging on gluten”. Then the outcry of support came from readers: concerns about depression, nutritional deficiencies, and maybe an eating disorder. The woman said she’d get help and turn things around - and that she appreciated the support.

Even knowing that infertility, osteoporosis, cancer and more can all be a result of untreated celiac disease, what causes a celiac to turn away from the very diet that could prevent all of these ailments? Is it just because someone told them they can’t have it -now they want it more? Is it because they crave certain favorites so much they just feel they cannot deny themselves? Is it pressure to fit in, in our processed-food culture?

One survey conducted two years ago and printed in Medscape showed that the gluten-free diet is is followed in only 50-75% of patients. The reasons: “unclear food labeling, low levels of knowledge about the diet, reliance on processed foods and the cost and availability of gluten-free foods.”

“Only 2 factors were associated with worse adherence, concern that cost made a gluten-free diet more difficult to follow and the admission that changes in mood and stress levels affected the ability to adequately follow a gluten-free diet.” –Dr. Daniel Leffler, MD Beth Israel Deaconess Medical Center, Boston, MA

Increasing Adherence to Gluten-free Diet

So how do you fix this problem? One thing to do, according to the aforementioned research, is to join a support group. This helps increase your knowledge base about celiac and the gluten-free diet, which will help you sort through any unclear labeling and reliance on processed foods -which were mentioned as problems earlier. I know it really helped me shortly after Emma’s diagnosis.

More recently a few studies have other, what could be considered more-clinical, suggestions. One study profiled on my site last month recommended doctors begin using a 7 question survey to determine gluten adherence, and then work with the patient to increase adherence.

Another study I found on the National Institutes for Health website recommended trained nutritionist evaluations as the best to help people adhere to the gluten free diet.

With any luck, the person who posted the “confession” will hopefully get some help and begin to follow the diet. And we all wish him or her the best as they go through the process of an early cancer diagnosis.

If you have celiac disease and are struggling with staying on the diet, I highly recommend getting involved in a support group or a celiac organization of some kind. Knowing you’re not alone really can help your psyche. If you think it goes deeper than that, consult your physician about other steps you can take to help you help yourself and get better!

Life is interesting, that is for sure.  Things have gotten really wonderful.  The brain fog is gone, and I see life in a different light.  The last two years have been hard, but I realized how fortunate I've been.  God has given me many gifts and opportunities.  I have never been so grateful for the wonderful things, and also the difficult times that I've endured.  I really see the path that I must take and all of the people that I will be blessed to know.  I would like to help all I can with the ailments associated with celiac disease and gluten intolerance.  People need to know how much their lives can be enhanced. 
Most people are familiar with terms like natural hormone balance, BHRT, and bio-identical hormones.

Alternative health care practitioners run expensive tests to alter or favorably increase specific hormones and offer specially-compounded expensive medications that are more compatible than regular Rx's.

There is an easier, simpler and far less costly way: Reduce those foods that deplete your hormones and that inhibit your sex drive.

The following articles will allow you to elevate your mood and rejuvenate your endocrine system with some dietary modification on your part:

Gluten Sensitivity and Depression - http://www.celiac.com/articles/21758/1/Gluten-Sensitivity-and-Depression/Page1.html

Testosterone levels correlate positively with HDL cholesterol levels - http://www.endocrine-abstracts.org/ea/0014/ea0014P628.htm

Diagnosis of celiac disease and its treatment with a gluten-free diet resulted in improvement in the lipoprotein profile, which included an increase in HDL and a decrease in the LDL/HDL ratio - http://www.ncbi.nlm.nih.gov/pubmed/16945614?dopt=AbstractPlus

Soy disrupts Your Hormones and Lowers Sperm count - http://www.soyonlineservice.co.nz/

Rush University Medical Center is currently recruiting patients with celiac disease for a study on the impact of Mind/Body medicine on adherence to a gluten-free diet.

"The gluten-free diet is so difficult to adhere to, and it is the only treatment for celiac disease; with our study we are hoping that the mind/body medicine course will assist people with newly-diagnosed celiac disease stick to the diet," states Dr. Sunana Sohi, a Fellow in Gastroenterology at Rush University Medical Center in Chicago.

According to Dr. Sohi, the study is looking for people recently diagnosed with Celiac disease in the Chicago area (within the past 4 weeks) or those who have only been on a Gluten free diet for 2 weeks or less. "If the person meets our enrollment criteria, they will be enrolled in one of two 8 week Mind/Body medicine courses, free of charge."

Dr. Sohi is optimistic that this study will have a positive impact on Mind/Body medicine and represent a new tool in the treatment of patients with celiac disease.

For more information about the study, please contact Rush University Medical Center at 312-942-1551
Did anyone catch the early morning news on NPR yesterday?  I turned it on in the middle of a very good piece on a family with celiac disease.  The focus was on the recent diagnosis of a 15-year old boy.  He was active in sports and had intermittent symptoms, until one day, they became constant and fairly severe. He was diagnosed fairly quickly, and responded well to a gluten free diet.  In fact, that was the best part of the story.  He explained that he felt nearly entirely well after only two weeks on a gluten-free diet, and the whole story was very positive, from his quick response and recovery, to his Mother's comment that, "thank goodness it wasn't something really awful - we can deal with celiac disease."  Hopefully there will be more positive, in-depth stories in the news in the future.

The story is accompanied by several gluten-free recipes:
http://www.npr.org/templates/story/story.php?storyId=105322381

The Best in Health,
Wendy
I've been very interested in reading the responses to the previous blog discussing whether there could be a link between celiac disease or gluten intolerance and Parkinson's disease.  There still is not any clinical information linking these two disorders.  Many people do feel there is some connection, or in some cases, gluten-sensitivity driven neurological symptoms have lead to being misdiagnosed with Parkinson's disease.  Three or four people are currently embarking on a gluten-free diet and are tracking their symptoms for me.  So, in the future there may be at least a few anecdotal cases to report on.  If you have Parkinson's like symptoms, don't give up hope!

Ida our 17, turned 18-year-old, exchange student from Norway will be leaving us in 9 days. As I look back the year has gone by so fast. It has been a year of growing in the celiac lifestyle - with a teenager who doesn’t need me hovering over her all the time. Although not to say she couldn’t have used it once in a while.

I introduced you to Ida in one of my first posts back in November. I explained how we were blessed with her presence for the school year and  about some of the challenges we faced, including with school lunches. As the year has gone on, you’ve heard about prom, a pizza party for her birthday, planning a trip to Hawaii, and Ida’s first Thanksgiving dinner (never had pie before).

But besides that I do feel like I’ve learned more about managing a teenager with celiac disease.  While this may be old hat for some veterans, I thought I would let you know what I found:

  1. Save your pennies for the teen years! The older they are the more they eat! Even my trim Norwegian teen went through a lot of gluten-free food! Way more than what I’m used to.
  2. They don’t want to be a bother when they’re at a friend’s house. Ida humored me when I’d ask her what she’s eating at her friend’s house and I would send food along or get more information from a parent. I’m sure when it’s Emma’s turn I’ll get an eye roll or a sing-songy “Mooom!”
  3. Try to prep them for restaurants. Teach them to do research on line. Empower them to be strong enough to recommend a gluten-free friendly place to their friends and then hope and pray they follow through.
  4. Teach them kitchen etiquette that will keep their food gluten-free; AKA don’t put your gluten-free bread on the counter next to the toaster that’s designated for regular bread (and bread crumbs)! A few paper towels will keep your food prep nice and gluten-free!

What has she learned? I would say her overall take is the gluten-free world in America is not even close to being the same as in Norway.

  • She can get McDonald's cheeseburgers on a gluten-free bun in Norway, but not in the USA. Ida says thee gluten-free buns are “really good”. Ahem..Isn’t McDonald’s an American company? Please don’t tell me someone at the headquarters in Oak Brook, Illinois is ordering gluten-free buns for Europe and not here!
  • All pizza places have gluten-free options in Norway but not here. She says they have to because so many people in Norway have celiac.
  • And other just-because-it’s-gluten-free-in-Norway-doesn’t-mean-it-is-here cases. Case in point: Airheads Extreme candy. Regular Airheads appear to be gluten-free as of this post. But one day we were talking in the kitchen and she was eating Airheads Extreme Rolls. Emma had never even seen these before let alone tried them. She said “Are those gluten-free?” Ida replied, “I think so, I can eat them in Norway.” But sure enough on the back in bold letters - Wheat flour.

I am sure one of the things she’s looking forward to in going back is enjoying the food that is known and she hasn’t had in a year. However, I’ve had the pleasure to make her first Juicy Lucys, pies, Thanksgiving dinner, pasta with cream sauce, baked beans, just to name a few.  She was a good sport and while she didn’t love the cream sauce, everything else she either really liked or tolerated.  Hopefully she’ll bring some of these things she’s learned home with her.

In the meantime, I’ve had a look into what my future holds for my daughter with celiac. I am feeling at least a bit more prepared than a year ago at this time.

I sent a petition to include rye and barley and their derivatives in the list of Common Allergens that require disclosure in labeling. The following letter was sent by me today in response to one received from Barbara Schneeman at the FDA:

Barbara O. Schneeman, Director
Office of Nutrition, Labeling and Dietary Supplements
Center for Food Safety and Applied Nutrition
Harvey W. Wiley Building HS820
5100 Paint Branch Parkway
College Park, MD 20740-3835

Ref: Docket No. FDA-2008-P-0509-0001/CP

Dear Dr. Schneeman:

Thank you for your letter dated May 28, 2009 concerning the above docket number, to amend the FFD&C Act. I was not aware that only Congress can amend this act. However, they have done so before and surely can again. So my question to you is: Is there someone else I need to write to in order to get action on this? My congressmen perhaps? Is there a separate petition to Congress that I need to make? Or can you get this subitted to Congress yourselves? What is the next necessary step?

In the meantime, please hold this petition open for continuing comments. I did not see this petition posted in the online database until after I requested status on it, which was just over 6 months after I had sent it to you. Then I was told that somehow it had not gotten into the database, and that was rectified at that time. However by then the official date for comments had passed. I do see that some people are now beginning to see it in the database and are beginning to leave positive comments on it. I want you to permit people to continue to comment on it under the circumstances.

Shopping for safe foods for the celiac diet will continue to be filled with peril until Congress amends this act to include rye and barley in the FFD&C Act. Please let me know what I can do to press this action forward.

Sincerely,
Hallie J. Davis

You may have recently seen my blog asking for comments on my FDA petition to have FDA add rye and barley to the list of most common allergens that require disclosure on food labeling. The fact that FDA added wheat to that list without adding rye and barley is total idiocy, for as we know we are all just as allergic to the gluten of rye and barley as we are to wheat, and the omission of rye and barley causes great difficulty when shopping for food.

It has recently come to my attention that my petition did not actually get into the FDA's database until after the supposed closing date for comments. But it's not a real closing date; you can still post your comments and they will be considered. So please do so! The petition is at
http://www.regulations.gov/fdmspublic/component/main?main=DocketDetail&d=FDA-2008-P-0509. As you can see, Bonny Cancino and Kim Hopkins were able to leave comments as late as this month. Please, FDA needs many more comments in order to take this petition seriously. Please add your vote for this petition by leaving a comment. And remember to hit the submit button at the very end of your comment, or it won't actually get posted. Then there will apparently be a delay before it actually shows up. I'm not sure how long. But if it doesn't show up in about a week, re-post it, please!
Yes, it would have been more appropriate to celebrate Mother’s Day with this post, but ironically (or is it coincidentally) the job of being a mom has really prevented me from preparing this post before now.

On this Mother’s Day, I found myself thinking back to all those times during Emma’s illness, subsequent celiac diagnosis and eventual permanent lifestyle change where the Mom really came out in me, both quietly and ferociously.

Here’s my list starting with before diagnosis and goes chronologically from there - maybe you can relate:

I remember...
  1. Before diagnosis, wondering why my daughter, celebrating her first birthday, refused to eat cake and threw a tantrum.
  2. Looking at my 1-year-old daughter with skinny legs, bloated tummy, and crabby disposition and wondering - is this the way the next 17 years will be.
  3. Questioning doctors about why my daughter throws up so much and has such a big belly - I was treated like I was an overprotective mom who knew nothing.
  4. Cleaning up vomit on the carpet, on clothes, in the kitchen, in bed, on the wall, on stuffed animals, etc.
  5. Leaving work early and in tears because something was wrong with my daughter and no one knew what it was.
  6. Feeling the best relief ever when a gastroenterologist confirmed our doctor’s eventual diagnosis of celiac disase - just by looking at her. Solidifying the fact that we weren’t crazy!
  7. Getting up at 4:30 a.m. to fix 16-month-old Emma breakfast at the latest acceptable moment because she couldn’t eat for 8 hours before her endoscopy and biopsy.
  8. My eyes welling up in tears as the anesthesiologist put the mask on my daughter to put her “under” for the biopsy. She was fighting and crying and then her whole body went limp.
  9. Panicking at our local grocery store, as I looked for gluten-free food for the first time. I only came home with eggs, Cheetos and Corn Pops (which now are no longer gluten-free).
  10. Being so happy that my husband had gotten me a bread maker for Christmas the year before; a gift my male co-workers thought was so dumb, ended up being such a blessing so I could make gluten-free bread.
  11. Feeling the joy after only 7 days on the gluten-free diet, Emma was a completely different child. Happy and no longer sickly.
  12. Being frustrated because I had to convince many friends and family that celiac is a lifetime disease and her diet had to be taken seriously.
  13. Grieving the loss of “normalcy”.
  14. Being relieved after finding other parents who had recently started a celiac support group. We all came together and eventually started planning our annual fundraiser: Making Tracks for Celiacs.
Fast forward to 4 years later….
  1. Being nervous about sending Emma to Kindergarten, but pleased we found one hot lunch she could take: Tacos!
  2. Celebrating victory when she ate tacos for the first time at school and they were “awesome!”
  3. Feeling bad when I had to tell her that tacos were no longer available on the menu.
  4. Making 3+ years of daily cold lunches for school.
  5. Feeling victorious when our school found gluten-free food options for Emma, which led to a gluten-free menu!
  6. Feeling strong enough as a mom of a celiac child, that we took in Ida, an exchange student with celiac; I started this blog; and I am teaching an occasional gluten-free class.
If you’re reading this as a mom of a child newly diagnosed with celiac, you may be able to relate to just a few things in this post — but that will likely change. As time goes on, the overwhelming shock of the diagnosis and diet will subside. With education and support you will feel stronger, more confident and ready to not only ensure your son or daughter is getting the right foods, but that you’re empowering them with the same tools to manage this gluten-free lifestyle on their own.

Now that’s a great mom! Happy Mother’s Day!

Celiac Disease in Africa?

Let me introduce myself. My name is Lionel Mugema. I was born in a small hospital in Kigali, Rwanda in the month of June in 1981. My mother tells me mine was a C-section birth and she wanted to name me Caesar.

I was diagnosed with celiac disease in Brussels, Belgium when I was about 6 years.

My family ensured that all my meals were gluten-free. However, now that I am all grown up it has changed. There exists no gluten-free food here in East Africa. The little that comes from South Africa is unusually expensive. Worse, my doctors do not believe an African can get celiac disease!

What do you think?

Gluten-Free Fast Food

You deserve a break today! You just might not be getting it at a fast food restaurant. Most fast food places are very slow in getting the gluten-free picture, while some are slowly coming around. Following is a list of some fast food joints and their allergen info. Feel free to contact the individual restaurants for more info, and to bug them about providing gluten free items.

Arby’s:
http://www.arbys.com/nutrition/printable.php?type=allergens
Arby’s is great about packaging the roast beef in a plastic container, rather than placing it on a bun. The curly fries have gluten, but the potato cakes seem to be gluten-free.

Burger King:
Very few gluten-free items.
http://www.bk.com/#menu=3,2,-1

Carls Jr.:
http://www.carlsjr.com/content/downloads/CarlsJr_AllergenChart_.pdf
There are a couple of things here:
The Six Dollar Lo Carb Burger
Regular & Chili Fries

In-N-Out:
Very gluten-free friendly… you can get any burger "Protein Style" or wrapped in lettuce instead of serving it on a bun. Protein Style is listed in their "Secret Menu" Also their French fries are made fresh from potatoes that were washed, peeled and cooked minutes before they are served to you.

Jack in the Box:
http://www.jackinthebox.com/nutrition/
Not much here.

KFC (Kentucky Fried Chicken):
http://www.kfc.com/nutrition/pdf/kfc_allergens_aug10.pdf
Not a whole lot here, either, although a few sides a gluten-free.


McDonald's:
McDonald’s offers Allergen info on their website:
http://nutrition.mcdonalds.com/nutritionexchange/ingredientslist.pdf
There is very little there that is gluten-free—even their fries and hash browns contain wheat! The salads seem safe, just watch out for the dressings. Most of the ice cream products look safe, too. Always check before you dine, though.

Sonic:
http://www.sonicdrivein.com/pdfs/menu/Sonic_Allergen_Table_9-30-08.pdf
There are quite a few choices on this menu, like fries and tots; just order your burger bunless.

Subway:
http://www.subway.com/applications/NutritionInfo/Files/AllergenChart.pdf
According to the chart, the following salads are gluten-free:
Chicken & Bacon Ranch (includes cheese)
Cold Cut Combo
Ham (Black Forest)
Italian BMT®
Roast Beef
Roasted Chicken Breast
Tuna
Turkey Breast
Turkey Breast & Ham
Spicy Italian
Subway Club®
Subway Club®
Veggie Delite®

Taco Bell:
http://www.tacobell.com/nutrition/allergens
According to Taco Bell's Allergen chart only three things on the menu are gluten free.
Side of Rice
Side of Pinto Beans and Cheese
Tostada


Wendy's:
Wonderful Wendy’s has their own gluten-free list!
You deserve a break today! You just might not be getting it at a fast food restaurant. Most fast food places are very slow in getting the gluten-free picture, while some are slowly coming around. Following is a list of some fast food joints and their allergen info. Feel free to contact the individual restaurants for more info, and to bug them about providing gluten free items.

Arby’s:
http://www.arbys.com/nutrition/printable.php?type=allergens
Arby’s is great about packaging the roast beef in a plastic container, rather than placing it on a bun. The curly fries have gluten, but the potato cakes seem to be gluten-free.

Burger King:
Very few gluten-free items.
http://www.bk.com/#menu=3,2,-1

Carls Jr.:
http://www.carlsjr.com/content/downloads/CarlsJr_AllergenChart_.pdf
There are a couple of things here:
The Six Dollar Lo Carb Burger
Regular & Chili Fries

In-N-Out:
Very gluten-free friendly… you can get any burger "Protein Style" or wrapped in lettuce instead of serving it on a bun. Protein Style is listed in their "Secret Menu" Also their French fries are made fresh from potatoes that were washed, peeled and cooked minutes before they are served to you.

Jack in the Box:
http://www.jackinthebox.com/nutrition/
Not much here.

KFC (Kentucky Fried Chicken):
http://www.kfc.com/nutrition/pdf/kfc_allergens_aug10.pdf
Not a whole lot here, either, although a few sides a gluten-free.


McDonald's:
McDonald’s offers Allergen info on their website:
http://nutrition.mcdonalds.com/nutritionexchange/ingredientslist.pdf
There is very little there that is gluten-free—even their fries and hash browns contain wheat! The salads seem safe, just watch out for the dressings. Most of the ice cream products look safe, too. Always check before you dine, though.

Sonic:
http://www.sonicdrivein.com/pdfs/menu/Sonic_Allergen_Table_9-30-08.pdf
There are quite a few choices on this menu, like fries and tots; just order your burger bunless.

Subway:
http://www.subway.com/applications/NutritionInfo/Files/AllergenChart.pdf
According to the chart, the following salads are gluten-free:
Chicken & Bacon Ranch (includes cheese)
Cold Cut Combo
Ham (Black Forest)
Italian BMT®
Roast Beef
Roasted Chicken Breast
Tuna
Turkey Breast
Turkey Breast & Ham
Spicy Italian
Subway Club®
Subway Club®
Veggie Delite®

Taco Bell:
http://www.tacobell.com/nutrition/allergens
According to Taco Bell's Allergen chart only three things on the menu are gluten free.
Side of Rice
Side of Pinto Beans and Cheese
Tostada


Wendy's:
Wonderful Wendy’s has their own gluten-free list!
http://www.wendys.com/food/pdf/us/gluten_free_list.pdf
All of their hamburgers can be ordered bunless. They serve croutons packaged on the side of their salads, so you don’t have to pick them out. The baked potatoes and chili are gluten free.

All of their hamburgers can be ordered bunless. They serve croutons packaged on the side of their salads, so you don’t have to pick them out. The baked potatoes and chili are gluten free.
Very few people have the star power that Elisabeth Hasselbeck of ABC's The View commands, and among those who do have it even fewer put this power to positive use. Over the past two days Elisabeth has openly discussed celiac disease and the gluten-free diet extensively on ABC's The View, and on CNN's Larry King Live.

Elisabeth's appearances are timed to promote her new book: The G-Free Diet: A Gluten-Free Survival Guide, which is now a national best seller.

Elizabeth Hasselbeck is Gluten-FreeI have no doubt that millions of people who have never heard of celiac disease or the gluten-free diet will be made aware of both due to her promotional efforts, and this will lead to thousands of people getting diagnosed and treated—many who might otherwise have never discovered their problem—or discovered it too late.

I encourage everyone to support Elisabeth's decision to publicize her condition by buying a copy of her book.

I would also like to personally thank her for not doing what many stars with such a condition might do—hide from it. Thank you for hitting your problem head on—and for being brave enough to hit a home run on The View and Larry King Live!

The G-Free
Diet:
A Gluten-Free Survival Guide
After I wrote that last blog entry, I went to my local Giant Food store and there on the shelf was a box of Corn Chex marked "Gluten-free"!  So distribution is ahead of schedule!


Probably all of you know that General Mills has reformulated Rice Chex to make it gluten-free. The new and wonderful news was that this apparently turned out profitable enough that they are now in the process of reformulating other Chex cereals. Here is the letter from them that I received today:

Dear Valued Consumer:
 
Thank you for contacting General Mills regarding Rice Chex cereal.  We appreciate the time you have taken to share your positive feedback with us.  We will be very happy to pass on your comments to the product team.
 
We are committed to creating the highest quality products for our consumers.  Feedback such as yours helps us achieve this goal for the future. General Mills is reformulating the following Big G Cereals to gluten free status: We appreciate your loyalty and hope you continue to enjoy our products:
  • Corn Chex
  • Honey Nut Chex
  • Strawberry Chex
  • Chocolate Chex
  • Cinnamon Chex
All 5 products should be widely available across the U.S. by June 1, 2009.  As with all reformulated products, both products may be on store shelves at the same time so we encourage our consumers to read labels/packaging carefully.   To ensure that the cereal inside the box is in fact the new, gluten free product.   Look for “NOW GLUTEN FREE” or “GLUTEN FREE” on the front/side/back panels. 

Sincerely,
Amy Sadowski
Consumer Services

I caught a spot on Oprah today with the actor Michael J. Fox discussing his battle with the neurological symptoms of Parkinson's Disease. He's always been an engaging persona, and I enjoyed the segment. As a nurse, I've always had a strong interest in neurological disorders, and have done a lot of reading on the links between Celiac disease and neurological disorders, especially gluten ataxia. At this point, Michael's symptoms are very noticeable and greatly affect the day-to-day activities of his life. Toward the end of the segment, he related that many of his symptoms "mysteriously disappeared" on a recent trip to the Himalayan kingdom of Bhutan. Dr. Mahmet Oz, Oprah's frequent medical spokesman, was also a guest on the show, and was tossing out ideas of why this might be, everything from "they eat a lot of chili's" to the benefits of high altitude, or on medications that Michael took to help with adapting to the altitude. But, I grew very excited by the prospect that Michael J. Fox's improvement was a response to, however accidental, a gluten-free diet! Because, I knew from personal experience that the diet in this part of Asia is largely based on daily consumption of dhalbhat, or rice and dahl (small yellow lentils). Fresh vegetables are rare at high altitudes, but the diet is supplemented by occasional meat, except in some strict Bhuddist or Hindu areas. In 1980 I lived in a neighboring small kingdom of Nepal, and ate almost exclusively a diet of rice, dhal, some vegetables, and occasional sheep or goat meat. Dates, peanut butter, and raisins rounded out our diet, washed down with copious amounts of chai tea, made with black tea and canned evaporated milk. Granted that I also was exercising vigorously much of the time, but looking back, this was when I was at the healthiest, strongest, and most vital in my entire life. Unbeknownst to me, my travels had excluded gluten from my diet for nearly six months. Upon my return to the U.S., and binging on all my favorite gluten-laden foods, I suffered severe intestinal distress, lasting nearly two years. Of course, at the time, both my doctors and I attributed all of my gastrointestinal symptoms to parasites, bacterial infections, and other health problems common to returning travelers. It was decades later that I was diagnosed with a gluten problem, and finally began to recover my health. So, back to the possibility of excluding gluten from the diet having a beneficial effect on Parkinson's, or a possible link between Parkinson's and celiac disease or gluten intolerance, I have to say that I haven't found much evidence. But, that doesn't mean I believe the link doesn't exist. There are many established links between other neurological disorders and neurological symptoms and the consumption of gluten in sensitive individuals. What I would love to see now is readers responding to this blog, or sending me an email, sharing personal stories, links to articles, etc. on this topic.
Hi All,
Back in September of 2008, I submitted a petition to FDA to include rye and barley in the list of most common allergens which must be disclosed on packaging. Right now, only wheat has to be disclosed, but as we all know the gluten of rye and barley is just as offensive to celiacs as that of wheat. So to include wheat in the list, without including rye and barley was nonsensical. The list needs to be amended so that rye and barley sources are also disclosed.

Without this disclosure, such things as "modified food starch", "flavor," "natural flavor" and other ambiguous ingredients may be derived from rye or barley without disclosure. This means that currently we cannot buy or eat anything with such "ambiguous" ingredients without a great deal of risk. My petition is now available to be seen and publicly commented upon at:
http://www.regulations.gov/fdmspublic/component/main?main=DocketDetail&d=FDA-2008-P-0509.

I hope you will go there, and read my petition, and leave a comment in favor of it for the FDA's consideration. The more positive comments we get stored in FDA's database, the sooner we are likely to get action on this.
First let me thank those of you who have responded to my blog!  This is my first and only blog attempt and to find out that people are reading it is really quite exhilarating!  The advice is quite welcome and interesting as well. 

I am currently in the UK and doing better on this trip than I have on any other travel in recent past.  As an erstwhile traveler with 27 countries in my travelogue, I was very unhappy to experience serious outbreaks on my recent trips.  My worst experience was in China 2 years ago when I ended up in the hospital with a severe skin outbreak that was on my right forearm...painful, pussy and quite ugly, it left scars.  I figured out that feathers caused that problem.  Since then I have all feathers removed from every hotel room.  Even if you tell them upon registration, you often have to ask upon arrival and then call housekeeping after you get into the room. 

I've also learned to bring a mattress barrier and a pillow barrier that are permanent residents of my suitcase.  I found a product that I use at home and on travel called MiteNix.  This obliterates dust mites and I carry a small spray bottle with me when I travel..it's one of my 3-1-1 containers on the plane because upholstered airplane seats can cause an outbreak.  My best friend found a seat cover for airlines and i carry this with me as well.  I find it works very well and is very easy to use. 

As for restaurant food, I have been able to stay gluten-free quite well by sticking to meat and vegetable combinations. 

It has become easier to avoid the triggers lately but I suffered for four years.  If my blog can help anyone reduce or avoid such problems I will consider myself successful.

I've also learned to wear socks or slippers in hotel rooms to keep my feet from swelling. 

My treatments from the naturopath have been working pretty well.  She restricted sugar and alcohol, caffeine along with bread and gluten and other items I appear to be reacting to.  In addition I'm taking DHist, InflamX and several homeopathic treatments along with Vitamin D which is apparently low. 

Drinking lots of water is also essential to flush toxins from the body, but in particular especially important for me.  Thus I keep a bottle of water with me most times. 

To anyone suffering from this condition, take heart, life doesn't have to feel deprived...just altered. 

I will say that I miss bread and my trip to France was particularly poignant as I watched others consume crepes and french bread which I love.  I managed to not eat them and be satisfied with enjoying the rest of the wonderful cuisine.  I have lost some weight..and I suppose that is something of a consolation. 

Happy travels to you all!

Gluten Free Beer

I have been invited to a group dinner out at a local restaurant. It's BYOB, and friends have announced they are bringing beer. Not wanting to be the odd one out, I decided I must obtain and bring gluten-free beer. So today I called 4 grocery stores and 10 liquor stores in an attempt to find gluten-free beer. I finally located multiple brands of it at Roots Market in Olney, Maryland, and Redbridge beer at Dugan's liquors in Pikesville, Maryland, as well as at Your Wine & Spirit Shoppe south of Baltimore on Rt 29. Dugan's was the closest, so I opted for it.

I decided it was best to test it out in advance of my dinner to be sure not to have my dinner spoiled by something undrinkable. So I am sitting here with a Redbridge beer, and I have to say it tastes like beer to me. Not my favorite beer, but beer, nevertheless. It has been over a year since I have had one, so at this point I am definitely working from memory. So all of you out there who have been abstaining, go ahead and live a little!
I recently celebrated my 22nd birthday at a Japanese hibachi restaurant. Knowing that the food would be cooked in front of me I felt safe that I would not get sick. I have been to this sort of restaurant before and it was a success. I am very careful when it comes to ordering Japanese or Chinese food because teriyaki sauce and soy sauce contain gluten.

Something went wrong on this Tuesday night. I was with about 15 of my closest friends, and the chef was very entertaining. I was so excited and distracted that I let my guard down. I left the restaurant feeling fine and continued to have a couple drinks with friends. A couple hours later what I like to call my "gluten stomach-ache" hit. It was late and I had already done my share of celebrating, but I couldn't help but blame the restaurant.

I did a lot of thinking the next day to figure out what made me so sick. Here is what I think...although I have had this disease for over five years, I made a major slip up. As I watched the chef cook the food he kept the rice separate from the noodles. Although he cooked the rice in front of us first, he used the same spatula to move the noodles out of his way. I don't know if it was the excitement of my birthday or me being distracted, but I did not pay enough attention to this. The food tasted great and he did not add any sauce; I guess I thought I was in the clear.

Another thought my friends and I had was that there may have been gluten in my drink. I am very careful when it comes to ordering drinks. I have learned the hard way that some alcoholic beverages they say "might" contain gluten really do make me sick. So I ordered a drink made of only rum and juices--a safe bet for me. The drink was great, but when I ordered my second I did not specify to them over again that I wanted the same exact drink. Again because I was so distracted this drink may have contained something I could not tolerate.

The two major lesson here are:
  1. Do not try out a new restaurant on your birthday. Stick with a place you know is safe for you. When you are in a big group like that it is easy to forget that checking for gluten is your first priority. Save the experimentation for a night where you can take your time and make sure it is safe.
  2. If you are ordering a mixed drink, make sure you watch them make it! This is something I always do. When it comes to wine you are safe, but it's sad to say that some bartenders do make major mess ups.
Lastly, it is important to remember the language barrier when you are out to eat. Eating international foods it great, but many other cultures do not understand what a gluten allergy is. We need to be very careful and very patient. Keep an eye on what is going on in front of you, try not to get distracted--like I did!
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