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

Yes, Virginia, potatoes are gluten-free!

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

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

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

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

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