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!”

To feed or not to feed?

Those of us who are gluten free know that eating gluten today may not have an immediate impact, but over time, more and more gluten can begin to diminish the usefulness of our digestive symptons.  So, when  you inadvertantly have pasta, or are served GF food that in fact is not GF, it won’t show right away.  Essentially, if you feed it, it will grow.  To me this is very similar to what Carl Yung once said, “What you resist, persists.”  I choose not to resist my intolerance and be gluten free, and choose education as a path to understanding and acceptance.  Remember, it is not who I am.

It’s not who I am.

Part of being gluten free was acknowleding that I needed to be gluten free.  As I mentioned in yesterday’s words of wisdom, I’ve learned not to be afraid to tell people that I am gluten free.  With this in mind though, I don’t let it define who I am.  It’s just part of me.

There are a lot of things about me that better define ‘who I am’.  For instance, I am a father, a husband, a singer, a painter, and a poet.  When I tell people that “I am gluten free,” I am not making a statement about my identity, but rather a request that I am taking into consideration when a meal is planned or a restaurant is chosen. 

In other languages, such as French or Spanish, the direct translation of “I am Jason” is really, “I am called Jason.”  One is not identified by a name, but rather referred to by a name, and thus allowed to be identified by things much deeper, and perhaps of one’s choosing. 

My wife’s cousin, Sarah, has epilepsy.  She is incredibly wise for her age and has taken a similar approach to her life as I strive to in mine.  Her website http://itsnotwhoiam.com/ even states it very, very clearly.  She raises awareness about epiliepsy, involves community organizations in these efforts, and has a book written about her and how she defines herself and her approach to epilepsy.  Although her focus is on awareness of epilepsy, she does not let it define who she is, let it stop her from pursuing things, and certainly doesn’t wear it on her sleeves. 

Her same idea and approach is what led to this website – an idea that living gluten free isn’t about gluten free at all!  It’s about being me – the dad, the husband, the singer, the artist, and, now, one of the GF yodas.

Be honest, be Gluten Free!

Don’t be afraid to tell people that you are gluten free.  As Bill mentioned in his recent post, you have to be honest with yourself and others about your condition.  You don’t have to wear it on your sleeve, but you should be honest with others.  I was on an excursion driving to Amalfi, Italy when the guide asked, “Does anyone have any allergies?”.  I spoke up about being GF.  When I arrived, I had an entire GF meal – pasta and all!  I was amazed and glad I spoke up.  So, don’t be afraid – you never know what may show up on your plate.  People are amazing and never cease to surprise me.

What up With That?

You must understand that I am not the healthier eater of the two Yodas…before my diagnosis, it was Strawberry Pop Tarts and Lays potato chips for breakfast.  So, I was  so excited to hear that Kelloggs was coming out with Gluten Free Rice Krispies.  That was until I found out that they were going to be made with whole grain brown rice!!  What up with that?

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!

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!!

Gluten Free Traveling

Let’s face it, being on a gluten free diet and traveling is really a hassle.  When I first learned I needed to maintain a GF diet, I did what Bill did and pretty much binged on anything labeled GF that I could get my hands on – thankfully, I didn’t have the same results as Bill!  A lot of these things required making something at home, or being near a kitchen, so traveling became a real quandry.  Nowadays, there are a ton of GF options out there, many of which have always been GF (or have recently tweaked their recipe to be), and I didn’t realize it.

So, now, when I travel, I have a system – a list of items I bring along to eat.  No, I don’t make a batch of GF cookies, GF bread, and go skipping off to grandma’s house in my red cape.  I don’t gorge myself on GF stuff before I leave the house thinking that I won’t be able to eat until I return.  I, as many folks do, look for something handy, easy to carry and fits my diet – like a candy bar or power bar.  I don’t think it’s too much to ask for, even though we are GF.

I’m not saying you can’t bake till your hearts content and maybe even bring along a sandwich or two on your favorite GF bread.  For me, these things almost always seem to get crushed.  A PB&J sandwich that is moist and oozing out the side just doesn’t seem appealing to me.  I never liked being that kid in school with crushed cupcake and a soggy sandwich, and I don’ t like it now.

Enough babbling now … let me get to it.  Here’s my list – I get what I can, whereever I can find it, and go with it.

1) Larabars - you’ll find these with other healthy power barr, meal replacement bars, and the like.  They are small, easy to carry and tasts great.  My favorite is the Apple Pie!
2) Bora Bora bars – I just recently learned of these, and they are incredible.  These bars are all natural, organic, and gluten free!
3) Gluten Free Instant Oatmeal – all you need is a cup of hot water and you are golden.  I’ve asked many flight attendants for one and they’ve begun to bring packets of oatmeal themselves!
4) Snickers Bars – I am ok with these, but be sure to read the package in case you may not be.  The bite size ones have gluten, so don’t eat those.  I like snickers because if I am in a pinch, there’s usually a candy shop around!
5) Trail Mix – any brand will do.  There are many out there that are GF and also nut-free if you need.  I need the protein and the good fats, so I stick with the traditional kind with nuts and all.

This is just my short list.  You are going to want to do a bit of research ahead of your travel to find GF places to eat – unless you checked a bag of luggage full of pre-made items (which I wouldn’t recommend seeing as it’s extremely hot in the bowels of the plane!).  Goto GlutenFreeRegistry.com to see what’s out there, and if possible, as folks living in your destination to look around for you.  And – always remember to tell people  you are gluten free!  There’s nothing more heartbraking then arriving at your friend’s hose and they’ve made lasagna – the real deal!

Happy GF traveling!  (And if anyone else out there has some traveling favorites, please add to this list – we are always looking for new things to try!)

You could have at least bought me dinner first! – A lesson on GF overload.

We told you that Gluten Free Yodas was a place where we would be open and honest about our experiences. Well this one will show you that we were not kidding!

I want to remind you that I am the gluten free newbie of the two yodas. I have only been free of the evil gluten (ok so that may be a little harsh) for a little over a month now. Where there have been so many great things about being gluten free there is one huge thing that you may not think about (but you will now)…your bowels.

As a newly gluten free person you immediately go out and purchase all the essentials. While all that stuff is amazing, it really does not have a whole lot of fiber in it. Let’s just say for the record I am not a nutritionist… just backed up.

In my case, before I was diagnosed, I was going all the time…no problem!

Not so much the case now that I’m on a strict gluten free diet… not going….big problem! I definitely am eating better, with more fruits and vegetables but probably not the right ones for getting the fiber my body needs.

So here it goes… About a week ago I noticed that I was having to go the bathroom all the time, day and night (just #1). The frequency and urgency was brutal. I talked to my wife and we thought maybe a Kidney infection or UTI (urinary tract infection).

Some of the benefits of a gluten free lifestyle is more energy and stamina, which increases your activity level (let’s just stop there). I promised my wife I wouldn’t let this slip, but I guess I just did.

So I made an appointment to go get all this checked out, but as my luck would have it my MALE doctor was not available. I was just going to see the doctor in the Urgent care clinic (which ended up being a pretty young female doctor). I figured that was fine, leave a urine sample, get a prescription, and I would be on my way. If only it was that easy – the test came back negative and the doctor tells me if the problem is not in the front, it is probably in the back. WHAT ‘BACK’?

I am now going to tell you 10 words a man never wants to hear a female doctor say, “I am going to have to massage your prostate for a bit“. I knew immediately this was not good…, and what the heck is a “bit”!!

Over the next “bit” I was poked and probed in the most private of areas (remember it was not in the front). But alas we had a diagnosis… an infection of the prostate caused by constipation… constipation caused by my new GF diet – yikes!.

Now the kicker is I had to give another specimen before I left which at first I could not provide. So, being the last patient of the day in a clinic with just a few workers left there, the doctor says, “Do I need to go back in there again?” To which I promptly replied, “not unless you buy me dinner first!”

So, Cipro for 2-4 weeks and increasing my fiber intake and I should be back to normal.

To all you newbies out there, remember the following:

1. Be sure to find sources of fiber in your gluten free diet – this can come from fruits and veggies – many of which are gluten free

2. Increase your water, decrease your caffeine – yes, water is gluten free too!

3. Supplement if necessary

And, of course, before you do any of these check with your health care provider first. You don’t want to increase one thing and decrease another!

Like I said earlier, this may have not been the first thing on your mind…but it will be now!

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