Gluten Free = Safe for me!! (Not so fast!!)

Before I even start to write the post, I know what you are saying.  Bill another T-Shirt saying…you are a marketing genius.  Now here is the only problem, I have no T-Shirts to put them on.  But who knows, maybe someday there will be a full complement of GFY merchandise.  Okay  now on to the important stuff…

For those of you who have been following us for sometime you have seen that I (Bill– I have scared too many of Jason’s family and friends) have had some ups and downs since being diagnosed with Celiac Disease in February of this year.  I have felt really good, I have felt really bad all while staying on a pretty stringent Gluten free diet.  As I said in one of my earlier posts that I am still dealing with some depletion of vitamins and minerals which cause all sorts of different problems in my day to day life.  The reason that I was having these problems was that I was not healing the way I should because of “hidden gluten.”  What…hidden gluten..everything I eat says Gluten Free.

(Before I go any further, I need to make sure people know that I am not a doctor, nutritionist, scientist or activist. These are just the thoughts and opinions of someone in the struggle).

What I found as I searched for hidden gluten is that Gluten Free doesn’t really have a definite meaning.  In 2004, Congress passed a law requiring the Food and Drug Administration to define the phrase. In 2008, the FDA blew its deadline.   And in 2011, we still have no official ruling. 

Because of this companies can and do label things gluten free that carry smidgens or more of gluten .  There are studies going on to see exactly how much gluten will damage a person’s (with Celiac Disease) intestines.  Most studies say you do not want to have more than 50 milligrams of gluten in your diet at any time.  The only problem is that there is no such thing as a “Glutenometer” which will tell you how much gluten something has.

For me I have to be pretty careful because even the littlest bit of gluten will affect my healing and keep me malnourished.  So I look for things that are certified by one of the agencies that test for gluten in food.  The only problem with these agencies is that they also don’t have the same standards and sometimes require food vendors to pay exorbitant fees just to become certified.  I have a pretty good relationship with a local Gluten Free food vendor and they told me that it costs $5000 a year to become certified.  Which is a lot of money for a small vendor, so some people will not go for the certification.  It is a real vicious circle!!

So as I said I am not an activist and don’t plan on marching on the Capitol anytime soon, but I don’t hesitate to write my congress people and the FDA to tell them to “Get on the Ball and define Gluten Free once and for All” (I know another T-Shirt).

I hope everyone is having a great summer!!

I’m a bad yoda…

I have not abandoned the blog, this is a real heartfelt journey for me.  In my case, we are still trying to get me to heal and at the same time make sure that I have enough nutrition in my body to sustain my vital organs.  I am not complaining, I get that this is part of my journey and I am not letting it get the better of me.  I am just so crazy busy and have had quite a few appointments that it is hard to find the time to be creative.  Even though what we share is our lives, it still takes a bit of creativity to make our loyal followers want to stay our loyal followers.  So I promise, next week I am back in the saddle…  Bill

Life Happens…

So I had originally planned  a trip report from my recent trip to Washington DC; but life has gotten a little in the way.

As we said we would always be honest, so I will give you some information of what it going on.  I have not been feeling all that well lately so I went to the Dr. and subsequently ended up at the Celiac Center at Beth Israel Hospital in Boston.  Well the truth of the matter is my gluten numbers are way too high and malabsorption is still occurring.  So I am having a biopsy on Friday to find out what is going on.  So I am very sorry that I did not have time to finish the post.  Jason will post on Thursday and I will have my trip report for you on next Tuesday…As I said “Life Happens”

To make up for it I thought I would share another picture from my friend Mark. This is the hat that President Lincoln was wearing the night that he was assassinated.  It was displayed in the Smithsonian Museum of American History.

Yes, Virginia, potatoes are gluten-free!

Recently, a relative of mine was so excited when I walked in the door, she blurted out – “I made gluten-free mashed potatoes for you!”  I really had to hold in my response – I didn’t want to spoil the moment.  Now, don’t get me wrong, when you are new to gluten free, you pretty much think everything has gluten in it, and assume you can’t eat anything, so it’s natural to think ALL starches mihave gluten.  Well … that’s just not true.  Potatoes, rice, tapioca, and buckwheat (not at all related to wheat) are all naturally gluten-free.  Of course, one reason to not eat any of these is if they may have been packaged in a facility that also packages glutenous items – it all depends on your level of sensitivity and caution.  Celiac.com has posted a list of gluten-free safe foods and ingredients which is worth keeping on hand should you be out at a grocery store and wonder  – “Can I have taro root?”.  (Potatoes, mashed or otherwise are on the list!)

So, eat all the potatoes you want.  Have a baked one with some Greek yogurt in place of sour cream – tastes delicious.  Going with the purest of packaging or growing some of the items yourself, the following are starches that are, in fact, gluten free:

  • Potatoes
  • Rice -white and brown
  • Oats (oats naturally don’t have gluten but are often processed in the same facilities as wheat, so use caution)
  • Corn
  • Tapioca
  • Millet
  • Quinoa (pronounced ‘keen-wah’)
  • Sweet Potatoes
  • Pumpkin
  • Squash – zucchini, yellow, acorn, etc.
  • Beans – string, garbanzo, white, kidney, lima, etc. 
  • Soy
  • Peas – technically a vegetable, but a starchy one at that
  • Carrots
  • Arrowroot
  • Chia – yes, as in the ‘pet’
  • Sorghum

So, when you grill up that steak, along with some great portobello mushrooms (just a drizzle of olive oil), serve it up with a side of anything from the above.  You’ll be just as full as if you ate a side os glutenous pasta or macaroni salad.  There’s plenty to enjoy that’s naturally gluten free, and many of these items are healthier choices to boot!

Celiac Awareness Month 2011

It seems nowadays that for every month of the year there are at least a dozen diseases or causes to be ‘aware’ of.  May is no exception, and it happens to be Celiac Awareness month.  So, what does it mean to be ‘aware’ of Celiac.   To us gluten free yodas it means the following:

Simply knowing that Celiac exists,

Being sensitive to those who have Celiac or maintain a gluten free diet,

Understanding that gluten free is not a fad and we aren’t doing it to be ‘cool’

Having Celiac disease isn’t a wish that someone makes while they are blowing out their birthday candles.  It’s not something that someone prays for like a kid wishing for a trip to Disney World.  However, it is a welcome diagnosis to those who have suffered in pain and extreme discomfort for many, many years.  It’s not a diagnosis one hopes for, but it is an explanation.  It’s a relief when it is determined.  I know this may seem like a stretch, but it’s about one’s own awareness of Celiac that brings to light a plan of attack, an escape.  Being aware opens up one’s options for moving forward, feeling better, and living.

Being aware of Celiac is being aware of gluten.  Gluten is an elastic protein that is found in many grains, such as wheat, rye, or barley.  It’s what we often see in bread dough making is stretch and stay together even as you continue to kneed it.  In Celiac, it is the gliadin portion of the gluten that causes an immune response resulting in damaged intestines, hence the malabsorption of nutrients the body needs to thrive.

When your body decides not to absorb nutrients, not to nourish itself, it can be difficult to see a way out.  The wonderful thing about the way out is that it is more often one of the most natural forms of treatment – diet.  A strict gluten free diet allows one’s body to rejuvenate, to grow and rebuild itself to become what it knows best to do – to thrive, absorb nutrients, and fuel the rest of the body.  Although a gluten free diet may be supplemented with additional vitamins and minerals, it’s a gluten free diet that is at the core of treatment.

Those of us with Celiac or gluten intolerance are already ‘aware’, so a month of Celiac awareness isn’t really about ‘us’ – it’s really about educating others on the disease and the diet.  So, how can we educate the public and others in our lives … well, here are some places to start:

  1. Celiac Disease Foundation - a wealth of information about the disease, treating it and further education
  2. Celiac.com - pretty much the oldest site out there dedicated to gluten free and celiac – everything from Q&A, rescipes, the shopping mall, to advice and forums
  3. Recognizing Celiac Disease - a very down to earth book explaining the disease, symptoms and how to treat them

In addition to the above, a new forum has been created as an expansion of GlutenFreeWorks.com called GlutenFreeNetWorks – join in the conversation here and you’ll learn a lot about what’s going on in the world of Celiac and gluten free.  We’ll see you there!

So, if you have Celiac, or gluten intolerance, take this month to bring more awareness of the disease to the world – start locally with a friend, or join in the online conversation.  You may just find that the person sitting next to you on the train is gluten free too, and looking for a good place to eat!

Take Me Out to the Ball Game…Gluten Free Style!

As I write this post, the Red Sox, my home team, sit in the cellar of the American League East with a record of 2-9,  not such a good start to the season.  A season where they are predicted to win 100 games and make the World Series.  Right now, you might be asking yourself, “When did the Yoda’s change this into a sports blog, I wanted to learn about gluten free living.”  Well we didn’t so don’t worry.  I was fortunate enough to be able to attend two Red Sox games this week, unfortunately they lost both games, which is now why they sit in the cellar.  OK, that is enough complaining.

Here is the information that you came here for!

As they are finding that Celiac Disease and gluten intolerance are far more prevalent than they thought, many ball parks that are now offering gluten free options.

Here are just a few of them with some examples of what they are offering:

  • Citi Field : Hot dog and hamburger on gluten-free bun, gluten-free snacks, gluten-free beer
  • Citizens Bank Park : Hot dog on gluten-free bun, gluten-free beer
  • Coors Field : Hot dog, hamburger and chicken sandwich on gluten-free bun, potato chips, cookies and brownies, gluten-free beer
  • Oriole Park at Camden Yards : Gluten-free crab cake, Asian noodle salad, hummus and vegetables, hot dog and sausage on gluten-free bun, gluten-free beer
  • Turner Field : Grilled sirloin burger served on tapioca-organic rice roll, hot dog on gluten-free bun, potato chips and popcorn, cookies and brownies, gluten-free beer

You will notice that Fenway Park, home of the Red Sox, is not on this list.  Needless to say I was a little nervous about what I was going to eat and I didn’t have time to grab something at the house so I knew that I would be hungry.  The park does advertise that they have a selection of gluten free snacks which basically consisted of  a brownie, a chocolate chip cookie and two kinds of chips that are gluten free.

The funniest thing about their gluten free section is the woman who works there who tries to talk you out of anything that you try to buy because they are expensive ($5 for the cookie, $3 for the chips).  I actually asked her jokingly if it was part of her job to talk people out of buying this stuff! 

Since I was a little anxious about not being able to eat, I talked to my “Yoda” Jason about his experiences and he told me that popcorn was OK, and that he has asked for hot dogs and burgers without rolls.  Where I was not thrilled that I had to ask this at the concession stand, I gave it a go anyway.  He was also reminding me to watch out for cross-contamination, of course.

I was lucky enough to find someone from the company that operates the concessions in the park and he explained that asking to have it “your way” was perfectly OK.  He also explained to me that there are concession stands throughout the park that sell only fries so their fryers are dedicated and their french fries are not battered and therefore ok.  When I say they sell only fries I mean they do not prepare chicken fingers or fried dough at that stand.  So things were definitely looking up.

I did order a burger without the bun the first night.  The second night I brought two pieces of Udi’s bread and put the burger on that - very delicious!  I also had french fries, and the best thing was I didn’t have a bad reaction to any of it.  The only bad reaction was from a woman sitting a row in front of me who looked at me a little funny for eating a burger with my fingers (trust me I could not find a fork or knife anywhere, I searched and searched).  So other than that one thing…no problems.  Watch the game lady, not me!

If you go to Fenway, the concession stand I was told about can be found under the bleachers between sections 37-42.  The best way I can describe it is that it is to the left of the “big” men’s room.  Don’t be scared that it says Fried Dough on the sign, they prepare that separately in a different fryer.  So where Fenway Park does not scream “gluten free” there are things availble that you can make gluten free just by asking a couple of questions.

My advice to newbies (like me) who are going to any sporting venue would be to go a little early, take a walk around, survey the situation and see what they have to offer.  They may, like Fenway, have a few gluten free options, but as you walk around you may find many more options that you can make gluten free just by asking.

So its root, root for the the home team, they have to starting winning sometime, don’t they?  I wonder if any of the players are gluten free?

Hitting a Wall– So soon?

My story is a little different than Jason’s.  As I mentioned in my last post, Jason has been living gluten free for quite a while.   I, on the other hand, am just approaching my third month.  I have definitely gotten used to eating gluten free, the texture of the food doesn’t really bother me anymore, and the taste of most things is fine.  I have found a pasta I like, Bi-Aglut corn pasta.  Udi’s makes bread and plain bagels that I love.  I am now a big fan of Mi-Del Chocolate chip cookies.  These are just some of my absolute favorites; of course I could list many more things, but most of them are on Jason’s list from one of our first posts.    So what would I have to complain about?

To be quite honest with you, I feel like I am hitting a wall.  I am starting to miss some of the stuff that I ate before I was diagnosed.  I now understand why people cheat.  Those Pillsbury Bunny cookies for Easter look and smell really, really good.  Worst of all, Twinkies are now in three packs for a limited time only.   We have been so busy that we have not really had the time to try to cook new things.  Being a creature of habit, I find myself eating a lot of the same stuff and right now I am kind of feeling like “how much longer can I keep this up?”  My brain and stomach are screaming “no mas!” We want something different and we want what we used to eat.  Remember the Twinkies, remember the #9 with Crab Rangoon and fried rice, remember (and this hurts the most) the chicken teriyaki from the mall food court.

I can’t tell you how many times in the past week or so that I have almost mistakenly bit into things that were not gluten free, in fact I almost just ate a piece of a Bunny cookie that was stuck on my finger a few minutes ago.

Oh how easy it would be to just say to myself “come on, what is one non-gluten free meal going to do to you?  Really Bill, just go ahead and have just one Twinkie”….STOP!!!!

A few things that you should know about this yoda:

  1. I knew that I would hit a wall sooner or later- I didn’t think it was going to be this soon, but I fully expected it to happen.
  2. I am not going to cheat- I have Celiac disease, even the littlest bit of gluten can make me very sick and could reverse the healing of the villi in my intestines (I know, TMI)
  3. I am not even going to be less diligent about cross contamination; I will still ask all the questions that I need to ask to maintain my strict diet.

I am looking at this “Wall Hitting” as a challenge. I am challenging myself to find the time to cook different things, find new recipes to try, look for different restaurants that I can try, and keep on the course that I have been undertaking successfully for the last three months.

So, if you find yourself careening towards that wall at a great rate of speed, step on the brakes and make sure that you remember why you are taking this course of action in the first place.  Take a breath and realize how much better you feel.

One of these things is not like the other…

Not sure if everyone remembers the song from Sesame Street where they had three things that were alike and one that was different. If not, here’s a link to see it…

This is a bit like what I feel like living gluten free in a predominantly gluten world (don’t get me wrong, things are much easier for me than they were for Jason when he began his diet, starting with the fact that I had a personal Yoda to guide me through what was good and what was not so great). There are still many challenges that I, as a GF-er have to contend with on a day to day basis in all areas of of my life:

Home: I am the only GF person in my home, so I have to think about my own dinner and sometimes what my family is going to have for dinner too. My bride will eat GF with me most of the time, but my boys have to be tricked into it. We don’t do that too often, but it is a little easier with pancakes or PF Changs takeout. Children also don’t have the bandwidth to understand that your life is different. For example, I recently purchased a bunch of ready to heat and eat food that I use primarily for lunch and dinner. When I asked one of my boys (I don’t remember which one, and they aren’t confessing) to put the food in the freezer for me, well…it never got there instead it was sitting on the floor – defrosted and wrecked. I was livid, not just ecause it was a waste of money, but I had to rethink my menu for the rest of the week because I had just lost three days of food. It is more expensive to eat this way and more time consuming as there are two parts of the family to buy for.

But you know what…it’s ok!!

Work: Recently I was told that I have killed the “going out for lunch trips” in my office. I know they were kidding and I wanted to know how “I”, who now brings his lunch everyday, killed this. They told me it was because they felt bad that I couldn’t go. I told them I could go but it just required a little prior notice and planning. So I think they understand a little better now. Jason has told me countless stories of traveling at work as well. He finds himself eating Subway salads when everyone else is getting a nice big sub. While there is nothing wrong with Subway salads (they are tasty), there’s more to life than salad. As a side note, Subway is testing GF bread at some of their locations in Texas, unfortunately a far trip for either of us.

But you know what…it’s ok!!

Friends: Recently I received an invitation to a friend’s house for dinner, which never affected me before, but now it is a little different. You ask yourself so many questions:

  • Do I tell them about my diet and expect them to cook for me?randy2
  • Do I bring my own, and if I do will that offend them?
  • Do I show up with no prior notification and play with my food?

This is very different from what I used to be like, and very different from most of the people in my life.

But you know what…it’s ok!!

Why do I keep saying that, because it is Ok that I am different, it is ok that I have these different needs than my family, friends and co-workers. Why, because the other option is NOT OK. The other option is being sick, malnourished, and in my case having 20-30 apthous ulcers (canker sores) in my mouth at any given time. This was my reaction to Celiacs…Not fun, trust me!!

So one of these things may not be like the other, but that thing (ME) is finally healthy!!! So, what I am trying to let people know, is not to spend time feeling isolated, take the time to plan and enjoy your new found health. Don’t be afraid to tell people about the new you and don’t be afraid if they don’t know what to do. You can’t control other’s reactions, but you can control your diet and yourself.

It’s Well Worth It!!

Ahh!, Gluten Free! Now What?! – A starter guide to the best gluten free products

Ok, so you just got home from the doctor’s office and are now frantically searching the internet for ‘gluten-free’ and wondering what the heck to do.  You may even have plans next weekend to go out and you’re wondering, ‘what will I be able to eat?’.  Then, it dawns on you … ‘holy crap!  I can’t have bread.  I can’t have beer. I can’t have cookies, cakes, or pasta!’

Calm down!  You can eat plenty!  For instance, potato chips are ok. You can still have a steak.  And, you can probably still have coffee.

It took me a long time and a lot of money to figure out what tasted good, and what I may want to pass over during my next grocery trip.  Gluten-free products have come a long way in the past ten years.  It was rare back then to see anything prepackaged, and mostly I just went without, or tried to make something at home that ended up tasting sandy, lifeless, and fell apart before making it to my mouth.  So, if you’re just starting out gluten-free, print out this list before your next shopping trip – you won’t be disappointed.  (Disclaimer: Read the labels in case there’s other things you can’t have!! )

  1. There are a few gluten free product reviews on a site called Qwowi.com, you may recognize the author.  Look for more of these types of reviews here at GFY.
  2. Celiac.com is another very good site for tips on how to keep on a gluten free diet – recipes, links and shopping can all be found there.
  3. Most local grocery stores how have natural food sections – this is where you can find gluten free products.  Here’s a few brands to stick with:
    1. Udi’s – they make the best GF bread out there.  (I’ve been told that Rudi’s is very similar, but I have yet to try it).  This bread doesn’t need to be toasted like other GF brands.  You can just plop your ham and cheese on it and go.  They make a really good cinnamon raisin too!
    2. Glutino – very good brand.  They make the closest thing you’re going to get to an Oreo.  Christine has even tried them and agrees.  As with all GF things, the difference often comes in texture, not taste.  I noticed that over time, I don’t even notice anymore.
    3. Mi-Del makes decent cookies as well – ginger snaps and oreo-like, both are good.
    4. DeBoles and other past brands make decent corn & rice pastas.  The best way to go with pasta is corn.  If you can find corn spaghetti or other pasta, go with it.  It holds up like wheat when boiled and baked.  The rice can be finicky and fall apart.
    5. Amy’s is another brand that has gluten-free options.  They make frozen dinners and such.  They also have a pretty decent pizza crust too.
    6. Foods by George is very good as well.  They make a really good brownie!  Put it out when company is over and no-one will know the difference.  They make really good muffins too.  Be sure to heat the muffins up for better results – again, without the gluten things are either really dry or really moist.
    7. Pamela’s is best for their pancake and baking mix.  The pancakes are great.  I make them every weekend.  The cookies that they sell are a bit dry, so it depends on what you like.  Get the pancake mix though!!
    8. Bob’s Red Mill makes GF oatmeal.  Oatmeal doesn’t contain gluten as wheat and all.  The reason why some celiac and GF folks stay away from oats is because they are processed in the same facilities as wheat and all.  Bob’s isn’t and it’s good.  I eat it and so does my 9 month old daughter (who must remain gluten free her first year).
    9. Cherrybrook Kitchen is another maker of baking goods.  Cake mixes, etc. – they’re all good.
    10. Believe it or not, Betty Crocker has GF stuff now too – right in the same aisle as the other baking goods.  The cake and cookies are great.
    11. EnjoyLife has come very good cookies – snickerdoodles, ginger, oatmeal raisin, etc.  They are all pretty good and they don’t have a lot of other common allergens in them either
    12. Liz Lovely has a GF line of cookies – very, very good.  We get these a lot.  My wife eats these instead of the gluten-filled ones too.  Any of the ones they make are great.  (More on these in future posts!)
    13. Chex cereals are now GF.  They’ve been advertising and all too.
    14. Fruity Pebbles is GF too!  Check the box and you’ll see.
    15. Aleia’s almond horn cookies – really good.
    16. Kinnikinick makes excellent donuts – the cinnamon sugar are great.
    17. Larabars are great on-the-go type bars.  They are gluten free.
  4. Read up on what has gluten and what doesn’t, and be sure to read labels.  Depending on how sensitive (or strict) you want to be, there are many folks who would argue that most store-bought, prepackaged things have some sort of wheat or oat-based product in them, including things like red-dye #9 and all those other fillers.  Wheat is a common filler to a lot of products, even some over the counter medicines and vitamins.  Again, be careful or as cautious as you need to be.
  5. Remember, there are A LOT of things you can still eat – potatoes, rice, corn, buckwheat (actually a seed, not a grain and no relation to wheat at all), nuts, soy etc.  All of these can still be consumed without worry of gluten.  All fruits and vegetables too.  There’s no gluten in meats either.
  6. For breading things for cooking – either crush up corn flakes or potato chips.  They both work well when breading chicken or creating some sort of beer-batter for frying.  In my opinion, they sometimes taste better anyway.
  7. Beer – there are a lot of beers out there now that are gluten free.  Bud makes a beer called Red Bridge.  It’s very good.  It’s made with sorghum instead of barley and wheat.  Sorghum beer has been being brewed for centuries in Germany and other countries, so it’s not anything novel, other than it’s gluten free and you can still have a beer with friends.  As for other alcohol, you just have to do your homework – some vodkas are, as well as some whiskey’s and scotch.

Good luck and stay tuned for more from two guys who live gluten free!

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