So much to say so little time…

I have so much to say in this post that I will call this a mish mash of stuff…here we go!

Gluten Free Fenway Part II – Sorry to say that I have been to couple of more games this year and the one cart that said Gluten Free and lived in the healthy selections area of the concessions now sells candy. First, they still do carry a GF cookie and Brownie, but if someone didn’t tell you that they were there you are not going to find it. Second, not sure how Swedish Fish can be termed healthy (don’t get me wrong, downright my favorite candy).  There is still concessions though that you can get a hamburger or hot dog without a bun and that only cook French Fries in their fryers so just ask around and you will find them.  But needless to say I am a little disappointed that they took down the sign…

FDA on Their Way – The U.S. Food and Drug Administration reopened the comment period for its 2007 proposal on labeling    foods as “gluten-free” on August 2nd.   The agency is also making available a safety assessment of exposure to gluten for people with celiac disease (CD) and invites comment on these additional data.  For more information and to make a comment go to http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm265838.htm

On a Personal Note:  Had an appointment at the Celiac Center at Beth Israel the other day (it’s Bill by the way) and the Dr. is very happy with my progress.  The only problem is that now I have to lose some weight.  So not only am I on a Gluten Free diet but now I have to be on a Gluten Free diet diet.  I guess I could be in a worse place than gaining weight and having my body absorb nutrients again.  So I will cut down on the bread,  the rice and the chocolate chip cookies and start to eat a little healthier.

 

That’s what I have for today…I will try to be more focused next time (if that is at all possible!!)

 

 

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

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.

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.

 

 

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!!

Copyright 2011 © Gluten Free Yodas