Big City….Little City

I had an interesting time last week when I was travelling to Jefferson City MO.  I have traveled since my diagnosis,  I have been to Washington D.C. and a few other places; most of them bigger cities.  Jefferson City was my first trip to somewhere a little more out of the way and definitely a lot smaller.  I wish I could say that this trip was successful from a food stand-point but I ran into more problems than I have anywhere I have traveled.   I can count three times that I was “glutened” in one week; I know that you may say that that is not much but when you are diagnosed with Celiac Disease you are told that you need to be careful because even a small amount of gluten can start the damage to my finally healed intestines all over again.  A few of the things that I ran in to:

  • A restaurant that put flour in their mashed potatoes
  • A few restaurants that didn’t even know what a gluten free diet
  • The hotel where we (GFBill and GFJason) stayed did a great job of getting gluten free deserts but when it came to lunch it was salad for the first couple of days.  If you are going to say that you cater to the GF, then you need to understand that it has to be more than salad.

You know that you are in trouble when people start asking the “well can you have cheese?”  It really shows how much more education is needed for places where food is served.  With so many people (1 in 133) who suffer from Celiac Disease, I think it is very important that restaurants seek out allergen education.  I think it will take time for smaller cities to catch up but I think it is important that they do, in the meantime I think the next time I fly there or to any small city, I will stick to chain restaurants where I can be sure I will be safe.

But not all was bad…see this thing below.  This was a pork steak that I had from a small shack in Warrenton MO called Two Dudes BBQ; the owner’s wife spent time with me and Jason telling us all the ingredients and how things were cooked.  It was so amazingly good and made my week.

pork steak

 

 

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!!

Living with Malnutrition

So again, sorry that it has been a crazy couple of weeks and the posts have been far and few between.  Both us yoda’s have been swamped at work and I haven’t been feeling all that well.  So to catch you up, the reason that they found out that I did in fact have Celiac Disease was that my vitamins and minerals tanked, landing me in the hospital for what they called a “heart incident.”  Some of my levels were the lowest that my Personal Care Physician had ever seen ( my Vitamin D was 4 should be at least 133 on the low end). So a couple of days in the hospital with some IV bags and Potassium drinks got be back to a decent place.

For a while after this I was feeling great, I had tons of energy, the aches and pains were less, my mind was clear.  I thought I was on the road to recovery.  I was following my diet to the T, asking the right questions and living the gluten free life.

Fast forward to today….

I am not feeling so great, I am still living the gluten free life, but now I have to be even stricter.  If it is not certified or made on a dedicated line in a dedicated factory then I shouldn’t eat it.  My numbers are still showing that I am getting hidden gluten and my vitamin and mineral levels are still not where they should be.  So now I am taking:

  • Multivitamin
  • Vitamin B1
  • Vitamin B2
  • Vitamin B6
  • Vitamin B12
  • Vitamin D
  • Zinc
  • Calcium

Along with my other daily meds; this is pretty much breakfast on some days.  I wish I could tell you  that I was feeling 100% better on all these supplements but I am not there yet.

We are still trying to search out the hidden gluten in things like my toothpaste, shampoo, and  in my wife care products like her lipstick (if it touches your mouth you could be getting gluten from it).  Somedays it can be a little disheartening, but as I have said before, I am not giving up and I will keep battling this until I find out what is wrong and get back to the place where I was when I got out of the hospital.

I am doing this with the help of the great people over at the Celiac Center at Beth Israel Deaconess so I am being treated by some of the best.  So we will keep plugging away.

Sorry for the Debby Downer post, but I think it is important for people with Celiac to know that it’s now always going to be easy.  There are going to be plenty of ups and downs and you just have to stick in there.  In the end I am sure it will be worth it.

Happy July 4th…go enjoy your family and friends; and like Jason I also wholeheartedly endorse the Udi’s Hamburg and Hot Dog Buns for your family BBQ.  They are so goood!!

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

Gluten Free Tool Kit

In my family every Saturday is “gluten free shopping day.”  This usually consists of a trip to several different places to stock up on food for the week.  This week we had a special appearance by my 13 year old son Evan who is also now starting on a gluten free diet as we wait for results of his Celiac panel blood test (I will write more about this in a future post.)  We usually hit a local health food store called Good Health, which for a small store has a very large selection of gluten free products.  Sometimes it includes a trip to Whole Foods, but not always, as their selection of gluten free products is not as extensive as Good Health.  The one place that we always go is Allcaneat Bakery, this place has the greatest gluten free prepared meals and baked goods.

What does this have to do with a GF Tool Kit?  Let me tell you.  It never fails that when we are on our shopping trip we always seem to run into someone who is just starting on their own gluten free diet journey.  Getting a gluten insensitivity or Celiac diagnosis can bring on a lot of stress since it is such a major change in your life, and most newbies are just looking for someone to throw them a lifer preserver;  this life preserver comes in the form of information.  I met a young women named Megan on Saturday who had just gotten her diagnosis and was looking for someone to give her some assistance.  So what is a Yoda to do?  This Yoda provided a brain dump of all the information in “his” GF Tool Kit.

Here’s what is inside!!

1. It is great if you have someone who can tell you what products tastes good and what doesn’t.  We have provided that in an earlier post that Jason wrote.

2. Knowledge is power, and the more you understand about your diagnosis and diet the better.  Here are a couple of good books that I think provide a lot of useful information:

3. I also found a few good iPod/iPad apps for eating out:

  • The Gluten Free Registry – finds all the restaurants, bakeries and grocery stores near your location
  • Gluten Freed – has a decent list of places to eat by state
  • Is that Gluten Free - a little expensive but gives you a list of most products in grocery stores and whether they are gluten free

4. The Gluten Free Guide- my nutritionist told me about this book and I could not live without it.  It is called the Gluten Free Shopping Guide.  It has an extensive list of things that are gluten free and includes most local super market chains.  They also update it if products are added or taken off the list.  It can be found here…

5. The Web – there are way too many great sites out there about gluten free living and Celiac disease to list so I will just give the most important one below:

6. I have found that the magazine Living Without has some great articles along with gluten free recipes and resources.

7. Most grocery chains that cater to the gluten free crowd have product lists of all their gluten free products.  Two chains that I know that have them are:

  • Whole Foods
  • Trader Joes (read throughly, some of their things are made in the same plants, cross contamination may happen)

8. A list of Gluten Free Medications, most of us take something even if it is ibuprofen, it is always better to know that you are not going to react to it.

9. A couple of standby restaurants that you know you can go to and get a safe gluten free meal.  Use the The Gluten Free Registry to find local places.  Even though restaurants may not advertise GF, they may have GF – call and ask – you never know.  Mine are:

10. A support system:  this is probably the most important.  Having good friends and family who will help you through this transition make it so much easier to get through.

This is by far not a complete list and there are so many more things that you can have in your tool kit but I thought I would tell you what has helped me.

Hopefully this will help a few more “Megans” come to grips with their new lifestyles…

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?

Ordering..He’s allergic to Gluten

Shortly after diagnosis I went to a small local joint in Cambridge called Mr. Bartley’s Burger Cottage to have dinner with my wife.  When I say small I’m talking in terms of physical size; not in popularity, this place has been in the movies (most recently the “Social Network,”) and in the news with a recent visit from Shaq and is one of the most popular places to eat in Harvard Square.

I have to admit I was a little nervous, as this place does not advertise a Gluten Free Menu and I had only eaten at one other “non-safe” place and not had the best experience.

Non-safe is my term so don’t read too much into it; in my crazy mind if the place does not have a dedicated Gluten Free menu it is a “non-safe” place and requires a little extra planning and a lot more questioning.  For example; PF Changs = safe, Boston Market = safe, Texas Roadhouse = non-safe, and Bartley’s = non-safe; remember these is strictly ratings by Bill, not endorsed by any of the Gluten Free associations or society’s.

So when we sat down I started asking questions, I planned on getting a turkey dinner,  no stuffing, mashed potatoes with no gravy and the vegetable of the day.  I asked, does the chef add anything to the mashed potatoes? (consequently I found out they add non-dairy creamer to make the potatoes smoother, which is gluten free by the way). I wanted to know if they added a sauce on the vegetables. Nope, just steamed carrots with a little sugar.  Being a former server myself, I know that this type of questioning can grate on you because you have a million things that you have to do and in this case your main concern is not my intestines. So being on the other side you start to get even a little more anxious…but the server we had that night was great, she answered all the questions and told me not to worry.

That’s where it gets a little hairy, at Mr. Bartley’s Burger Cottage the custom is that they yell out your order to the line (the cooks).  Ok I can deal with that until I hear her scream “Ordering…He’s allergic to gluten.”  Now as I said Bartley’s is small and the other thing about Bartley’s is that it is uber busy all the time so there had to be at least 50 people in this small restaurant at the time that she was yelling my life story to the masses.

I tell you at that point I wanted to crawl under the table, I felt that every pair of eyes were trained on me and they were all talking about my food allergy.  How snifty!! (this is a word that my son tells me means sexy and nifty and seemed appropriate to use here.)  But as I was under the table I started to think …

  • Her yelling meant that everyone on that line who touched my food knew to be careful because if they weren’t they were playing with someone’s health.  (Not that any chef in their right mind would ever trick a gluten free person into eating gluten.  That’s crazy… and I think as they would say in the olden days; he should be boiled in his own oil.)
  • This is not about who I am as a person, my diet does not define me, I have to think I am so much more than just a guy who can’t eat food with gluten (well at least I hope I am)

When we started this blog we decided it was important to let people know the trials and tribulations of having “by diet” to be a little different. We wanted to convey the truth of someone who has lived this life for quite a while and someone who was just beginning the journey.

Life is not always going to be as easy as it was, you are going to have to question more, you are going to have to plan more and going out to eat is going to make you more anxious. But in the end it is worth it, because you are taking responsibility for your own health and making it work for you.

So as Jason so aptly put it earlier in the week “It’s not who I am…It’s just how I have to eat!”

I have a personal Gluten Free Chef…and it isn’t my wife????

…And to be honest with you she’s OK with it.

Time is just not something that I think anyone has a lot of these days.  Especially with two teenage boys who go to school miles away from our home and a wife who works full-time.  So when I was diagnosed I thought OK, I will go out and buy whatever I can get my hands on and my wife and I can start baking/cooking gluten free, WRONG!!!

With limited time, there never seems to be those few extra minutes to try to figure out how to make the best GFree brownies, or how to work with GFree flour, never mind sit down and create a gluten free meal plan for the week.  Therefore, I have relied on a lot of gluten free prepackaged food from one of my favorite local places Allcaneat Foods.  (I promise to review them sometime in the near future-they’re awesome and if you’re in the area you need to check them out).  I must also confess that I believed that once I was diagnosed that we (my wife and boys) were in this alone. I thought we would deal with this as a family, much like we did when our youngest son was diagnosed with a milk protein allergy as a baby and a red dye allergy as a toddler.  We weren’t thinking about all the supporting cast members in our journey.

In my case, people like my sister who saw GFree bread and boxed Mac & Cheese; and picked them up for me.  Or my mother-in-law who instantly started thinking about how my favorite meals at her house could be adjusted to make them GFree.  And, of course, my Mom (you may remember from an earlier post I told you I am kind of a mama’s boy) who immediately went online to look for GFree cookbooks and magazines.  She even spent a whole afternoon watching GFree day on QVC and was texting me the whole time asking if I wanted her to buy this or that!

apple-pie-ck-709820-l But I think everyone (yup that includes my wife and my Mother!) pales in comparison to who I now refer to as “my personal gluten free chef.”  For the sake of protecting the innocent we’ll just call her Eliot.  Eliot is one of our family’s closest friends and she has been more “into” my diet than me.  On one of my first visits to her house, I was greeted with boneless chicken breaded with mash potato flakes accompanied with white rice, so yummy.  Another time it was GFree risotto and for dessert GFree brownies made with sour cream to make them super moist.  Most recently it was a homemade apple pie, completely gluten free!  This put me right over the top and provided the muse to write this post.  On top of all this, she has a list of items containing gluten on her refrigerator so that when we are planning our next “pizza night” she can make sure there is always something there just for me-and yes she even found a local place that has GFree pizza!  She always has a new type of cracker for me to try along with her homemade hummus that is gluten free for me to snack on.

You are probably saying to yourself, you are so lucky to have an Eliot in your life, and how I wish I had an Eliot too.  And that is exactly my point-I had no idea when I was diagnosed that I would have the supporting cast members I now have to help me figure my way through this new GFree world in which I now find myself.  But, as I am learning to navigate my new GFree existence; I have found that the people who love me really are willing to go the extra mile so that I continue happily on my “crazy” diet.

Just take a good look around and you will find that you too have this support system waiting to help you in any way they can.  And lastly my hope for you is that you too will find yourself an Eliot in your life.

 

 

Just the smell of wheat is making me itch!

I was sitting in the food court at a local mall this weekend in front of Sbarro – the italian restaurant.  We sat there because there was a high chair available for my daughter.  I immediately started to itch!  I had no idea why.  Then, it dawned on me – the first day of spring is just a couple days away.  Every year at this time, as the snow melts and the weather gets warmer, more and more allergens enter the air.  These all seem to meet inside my body.  I sometimes feel like I have ants in my pants!

One of my doctors described allergies to me this way, he said, “allergies are like a stopped up sink, the more allergens that fill the sink, the more it will overflow.”  This is where the itching comes in.  It’s not just from one allergen – wheat, it’s from a bastion of other things I am allergic too, and never knew about until developing an intolerance to wheat that flows through my blood stream. 

It’s essentially a kick in the pants to become even more strict than I already am with my gluten free diet.  What works in the dead of winter when no pollen is floating in the air, doesn’t work now.  So, if I am out at a restaurant, I have to say “please grill that chicken away from anything breaded”, or “please mix that caesar salad in a fresh cleanly washed bowl”, or I simply don’t eat out (and I love eating dinner out!).  I do have a small locally owned restaurant called Kelly’s Kitchen that has a gluten free menu and knows the system, so I’m fortunate.  Their gluten free and non-gluten free food is great in a town filled with pizza joints.  I don’t, like Bill, have PF Changs down the street, and I wish I did.

And so begins the season of very, very strict gluten free dieting, so that my ridculously itch body doesn’t itch anymore!

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