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!!)

 

 

Is my house Gluten-Free?

I often ask myself, ‘Is my house gluten-free?’  With Bill’s recent and unfortunate encounters with hidden gluten, it really makes me wonder just how is gluten getting into my gluten-free house – or life!  Neither my wife or my daughter are gluten-free, so automatically there is definitely a place for contamination in the kitchen, which I am very careful with.  But, setting this aside, what else in my house has gluten in it?  – outside of the kitchen.

It’s truly amazing the amount of products that use wheat or other grain as a filler or binding agent.  Bill mentioned lipstick, and that’s not the only bathroom product that may contain gluten.  The list continues in the bathroom beyond lipstick to toothpaste, soap, hair gel, shampoo, blush, foundation, lip balm and deodorant.  Women’s and men’s products alike have the same issues.  Check this site out for a list of GF bathroom products: http://www.glutenfree-lifestyle.com/glutenfreeproductsbytype.html  It’s worth taking a moment to do so. 

You may ask yourself, ‘why would a dude worry about makeup?’ – well … when you are hugging, kissing, or intimate with your partner, you are inadvertently exposing yourself to gluten.  Depending on your sensitivity to gluten, you could be taking in gluten in ways you never imagined.  As crazy as it seems, it’s important to think beyond the kitchen and what you ingest at mealtime. 

The bathroom medicine cabinet brings a whole other myriad of gluten into life as well.  Even disease-specific medications, such as asthma inhalers and other drugs contain gluten.  We’re not medical experts, so you’ll have to research each of the items you take and talk to your doctor.  http://glutenfreedrugs.com/list.htm offers a good list, but your doctor should confirm. 

As we continue our tour through the house, be sure to look in your laundry room.  Many laundry detergents contain gluten.  Yup – you could be wearing, sleeping in, or walking in gluten and not know it!  Again, due to the extensive use of wheat and other products containing gluten to thicken, bind, and extend products, it’s likely you might be exposed to gluten in a way you never imagined.  Here’s a short list of detergents that other GF-folks have researched: http://ourplacelivingglutenfree.blogspot.com/2010/04/update-gluten-free-laundry-detergent.html  I urge you to do your own research as well.

Whether you are new to the GF-club, or a seasoned veteran, it wouldn’t hurt to take a tour of your house with your GF-glasses on to see what else is lurking out there.  It wouldn’t hurt to rethink the things that are marked as gluten-free either!  You never know.  Maybe we need to brand a GF-Flag that can hang outside our doors?!

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!!

Crazy Russian Girls Cake is Crazy-Good!

My best friend lives in Bennington, VT and visits as often as he can.  And, when he does, he is gracious enough to bring along gluten-filled (for my wife and himself) and gluten-free (for me!) treats.  He’s lucky enough to live in a town where a local baker has taken up the gluten-free baked goods gauntlet.  Crazy Russian Girls Bakery was born out of a love of food, baking, and feeding people.  They welcome everyone with their food and it’s no wonder why. 

As I mentioned, I’m only able to inhale in these GF treats a few times a year, but let me tell you, they are delicious.  I’ve enjoyed everything from cupcakes to a multi-layered chocolate cake.  Every bite is wonderful.  (My apologies to those who are allergic to chocolate.  I’m not sure what is worse, chocolate or gluten!) 

Each cake is moist and the texture is spot on.  There’s no gritty feel to their cakes and they hold up to their gluten-filled counterparts.  The frosting is nothing to shake a stick at either, but what’s not to love about sugar, butter and cream anyway!  No complaints here.

My wife and I lived in Bennington for a short while.  It was back in the day where no one knew what gluten was, or how to be free of it either.  There was only one health food store in town selling only some of the very earliest of GF products.  I mostly made everything at home and focused on things that were naturally gluten free – like vegetables, meats, rice, and potatoes – go figure!  I wish the bakery had emerged back then – I would have been there every morning to get a coffee and a nice treat on my way into work. 

Well, I’m glad they are here now.  And … I’m even more glad that I have a great friend who brings me treats I can eat.  Yum!  And, yes, Crazy-Good!

Finally on my way back…its about time!!

 

1111976_retro_clockSo for those who have been following my trials and tribulations since the start; of out blog, you know that for a while I was feeling really good and then kind of went downhill for a little bit.  When I say downhill;  what I mean is that I was not feeling as good as I was when I started the Gluten Free diet.  My vitamin/mineral levels were way down and for some crazy reason my gluten numbers were way up.  There was even talk of Refractory Celiac Disease, a fairly rare and fairly serious condition which requires treatment other than a gluten free diet.  This could include taking medicines such as prednisone and possibly even some chemotherapy drugs.   My Doctor even questioned if I was cheating…which by the way I was  not and have not even once. “I don’t eat it …if I don’t read it” another thing I should put on a T-Shirt along with the infamous “People don’t eat grass, Cow’s Do.”

So I had to buckle down and eat only things that I could be certain did not contain gluten, which meant that I had to give up two of my favorite things.  Just because  these things said they were  gluten free  didn’t  mean they are safe to eat (at least for me anyway). 

I found that out the hard way. 

I will save my thoughts on that for another post. 

Well I found out the other day that my vitamin/mineral levels are heading back up (still fighting with my iron levels and vitamin D levels).  But the best news is my IGa and IGg numbers are heading down.  My IGa went from 17.71 to 13.01, which means that I found the hidden gluten and have pretty much eliminated it from my diet.  My IGg level went from 29.25 to 20.33, which indicates that my villi are actually starting to do what they are supposed to be doing.  That level is still a little high, but it takes some time to heal (I can wait).    I am in a good place now and if I can just get my other vitamin levels to play nice, I think I will start feeling a whole lot better.  So the morale of the story is keep at it, you will find the answers you need if you just keep looking. 

I hope you had a Happy 4th!!

It’s not delivery, it’s D’UDI’s!

I first want to say that I don’t work for and don’t get any kickbacks from UDI’s when writing reviews.  I just really like their products and can’t help but promote them to the GF-masses.  My wife and I had a hankering for pizza this week, and we had all the fixings including a package of UDI’s pizza crust in the freezer.  I had bought them a while back with just this situation in mind.  We went out to the garden, clipped some fresh basil, slathered on some great sauce, mushrooms, cheese, and spinach and put it in the oven.  (I want to note that my wife doesn’t always eat my GF food, especially when it comes to pizza, so she had a nice fluffy Boboli crust on the side!)

The smell wafted through the air and made its way around the house.  We were giving my daughter her evening bath as I pulled them out of the oven.  Ahh … pizza.  Nothing like it.  Picture yourself at the local joint folding your pizza, taking down piece after piece.  Yum!

I couldn’t help myself, and dug right in.  It was great.  No complaints, other than I had to make it!  Which I never mind since I know it’s GF!  The crust held up nicely and was easily folded to my liking.  I was licking my chops as I went back to the bathroom to finish up bath-time.

I put my daughter down to sleep and tip-toed down the stairs.  I proceeded to pretty much inhale the rest of the pizza, which, mind you, is really only 8 inches round – so, it’s not saying too much.  Every bite was great.  Hats off to my wife’s topping choices – she’s a fantastic cook.

To wrap up my raving … go out and get some UDI’s pizza crusts, make it at home, get a movie, maybe even some GF beer – and breathe.  It’s all good.

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

Food Should Taste Good – Yes, yes, it should – even when gluten free!

My brother turned me onto Food Should Taste Good (FSTG) chips recently and I am completely hooked.  I can’t seem to keep them stocked in the house.  My wife loves them too!  It’s hard to find healthy gluten free alternatives to fiber-rich crackers, and these hit the mark.  I suppose they could go on the ‘happen to be gluten free’ list, but I wanted to call them out seeing as I eat them almost every day.  They have pretty much become a cracker-substitute for me.  There’s nothing like a good slice of Cabot NY Sharp Cheddar on one of these chips.  Yum!

So … what makes them so good?!  I think it’s because they didn’t really focus on the non-gluten aspect of the food.  Instead, they focus on what makes healthy food taste good, like incredible flavors and seasonings.  People often ask me when I cook for them – what did you do to make this taste so good?  My answer is often ‘nothing’.  I let food speak for itself.  A little salt and pepper go a long way.  I think that the folks at FSTG work with this philosophy as well.  The food is good already, they are just focused on what makes it healthier and in some instances more sophisticated.

All of the FSTG chips are gluten free, cholesterol free, and are a good source of fiber (which is needed as evidenced by Bill’s recent experience).  Here are a list of my personal favorites:

  • Olive - these taste incredible.  With a little hummus or even guacamole, these chips are great.
  • Lime - Again … dip these in a little guacomole and you’re at your favorite mexican cantina – and you know it’s GF!
  • Cheddar - I know it seems odd to double up, but I do!  I eat these with a slice of cheddar on top and it’s all cheese-kwow goodness.  I would put these in the better-for-you-than-Doritos category. 
  • Toasted Sesame - these are the ones that are most like a cracker to me.  Serve these with a bit of cheese, a shmear of cream cheese or with other crudete.
  • Multigrain - hey, you asked for healthy and GF.  Here it is.  They taste great with anything, really!

I should say that all of the other flavors are great too, I’m just listing my personal favorites.  So … if you stumble on these simply packaged black and white bags of chips – grab a couple.  You won’t regret it.  Crack open a bottle of wine (yes, wine is GF!), get a nice smoked gouda for the chips, and relax – you’ve had a hard day at work!

BBQ Season Opens with UDI’s Buns!

I can’t even remember the last time I ate a hamburger without a fork and knife.  Growing up hamburgers were always being made in our house.  A little ketchup, maybe a pickle on a nice bun – yum!  We’d hang out poolside eating and swimming, then eating more and swimming more.  Those were the days!

Fast forward to today … as I mentioned in my previous UDI’s post, it’s very hard to come by a good bread for anything, let alone a good bun.  Most of the ones I’ve either made at home or bought crumble in my hands before even making it to my mouth.  It’s like trying to pick up sandcastle!  It just can’t be done. 

This past weekend – yes, the weekend before Memorial Day, I had the privaledge of sampling UDI’s new hambuger buns!  The weather was great, and my sister-in-law was visiting (also GF), so I knew it was a great time to grill up some burgers and give them a go. 

Well … without sounding to gushing – they were fantastic.  Both of us cheers’d as we began to bite into our burgers – sans fork and knife – for the first time in ages.  The buns held up amazingly to the juice of the burger and the condiments.  They didn’t crumble, get soggy, or fall apart even as we progressed through dinner.  We didn’t even toast them either! 

The texture of the bun was great.  Unlike other brands I’ve tasted, UDIs buns are not grainy and hold up to their gluten-filled cousins.  The flavor was spot on as well.  It just tasted like a bun – nothing more to it, really.

So … in short, to all you summer-grilling, beach-going, crab salads eating folks out there – turn on the heat and let summer begin – and leave the forks and knives at home!

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