About bmurphy

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

 

 

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!!

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!!

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

Life Happens…

So I had originally planned  a trip report from my recent trip to Washington DC; but life has gotten a little in the way.

As we said we would always be honest, so I will give you some information of what it going on.  I have not been feeling all that well lately so I went to the Dr. and subsequently ended up at the Celiac Center at Beth Israel Hospital in Boston.  Well the truth of the matter is my gluten numbers are way too high and malabsorption is still occurring.  So I am having a biopsy on Friday to find out what is going on.  So I am very sorry that I did not have time to finish the post.  Jason will post on Thursday and I will have my trip report for you on next Tuesday…As I said “Life Happens”

To make up for it I thought I would share another picture from my friend Mark. This is the hat that President Lincoln was wearing the night that he was assassinated.  It was displayed in the Smithsonian Museum of American History.

Gotta Love New England

Was going to post a review of  “Gluten Free DC” today but due to flight delays getting into Boston, it didn’t really happen.  Sorry; it will be ready for Tuesday.  I will tell you about some of the great and not so great experiences that I had on my recent mini-vacation.

Picture courtesy of the great “Mark Hornbuckle”

I choose number 2!!

(This has nothing to do with the previous post about the lack of fiber in my diet)

I had a much longer post that I was going to write today but I thought that I would give you a little update of what is going on my Celiac condition in hopes of helping people who may be in the same boat.

I was diagnosed with Celiac Disease almost three months ago now.  Right after my diagnosis, and start of a very strict gluten free diet, I stated to feel much better.  I had more energy, more stamina, more focus; in other words I was feeling great!!

I wish I could say that it lasted, but it hasn’t.  Due to some other medical issues I was having, I have been to the doctor a few times over the last month.  The doctor decided to run a Celiac Panel to see how I was doing with my diet.  Now, I know I am being as strict as anyone can be, and not even thinking about cheating, and really try to stay away from things that may cross contaminate me, but I suppose he wanted to check anyway.

Even with being very strict, my Celiac panel is not where it should be.  It could mean that I am getting gluten somewhere (I can’t even fathom a guess).  It could also me that I have a different kind of Celiac that I had not heard about until yesterday called Refractory Celiac Disease.  RCD is a type of Celiac Disease that requires other interventions besides just a strict gluten free diet.

What these interventions are, I am not sure and neither was my doctor (understandable as he is general internist).  So I am in the process of either getting a referral from the hospital in which my doctor practices, or getting an appointment at the Celiac Center at Beth Israel Deaconess Hospital in Boston.  In the meantime, I am healthy, all my nutrient levels are up, just not where they should be.  I am and will be OK.

That last line is the reason I wrote this post.  I did not write the post for people to say “Poor me”; I did not write the post because I am feeling sorry for myself.  I did write the post because I wanted people to know that it isn’t always going to be easy and sometimes it sucks and you will not always get the news that you want.

At that point you have two choices; 1. to wallow in self-pity or 2.  get on…and move on and find out what is going on with your body and take care of it as soon as possible.

For the record, I choose number 2!!

People don’t eat grass…cows do!!

I am not a scientist, or a nutritionist, or a doctor; so I cannot tell you hard and fast facts about why gluten is bad.  I can only tell you why I think it is bad!

Gluten is a protein found in wheat, barley and rye.  It is what makes pizza dough stretchy, gives bread is sponginess, and is what thickens soups and sauces.  You can’t see it; you can’t even find a picture of it on the internet.  It is just there! It is hidden in pizza, pasta, bread, wraps, rolls and most processed foods.  Gluten truly is a staple of the American diet.

Two reasons why we are so sensitive to gluten are:

1. The lack of genetic adaption to eat grasses, humans are not meant to eat grass, cows are!  Wheat was introduced in the middle ages in Europe and about 30 percent of people of European descent carry the gene for Celiac disease.  I guess I won the genetic lottery, being of Irish and English descent and all (NOT!!).

2. American strains of wheat are genetically modified to have a much higher gluten content.  That is why the bread we eat is so moist and fresh.  This “Super” Gluten is now part nearly all wheat strains grown in the United States.

The inability to digest wheat is an auto immune reaction - in some it may cause stomach issues, in others it may cause more serious auto immune diseases.  You can find plenty of research studies on the internet which link sensitivity to gluten to many things.  I am not going to list them all here but you can find a great list in the Elisabeth Hasselbeck book that I reviewed before.

For others, like myself, it is much more serious.  Our body looks at gluten like a foreign agent trying to invade the body.   When it invades, it flattens the villi in our small intestines causing malabsorbtion of nutrients.  This malabsorbtion can cause a load of other problems.  In my case in particular, all of my internal systems started to malfuction due to the fact I was so malnourished.

My internist said that when he looked at my vitamin D levels, he thought it had to be a mistake.  It is supposed to be in the hundreds…mine was 4!!  So as you can see in some cases it can be a little bad and in others like mine it can be very bad in some cases even deadly!!

But the reason I decided to write this post is far more personal.  My youngest son has had some of the same problems as me – he gets canker sores; he has some stomach issues; he can be quite pale; he has not grown as much as his brother did at his age, and he’s GROUCHY all the time.  So naturally we thought it was best to have him tested.

While we were waiting for the results, which take a while to return, we switched him to a gluten free diet.  Within a week he was not getting many, if any, cankers.  The color had come back into his face, and he was a pleasure to be around.  We were convinced that the test was going to come back positive.  Well we were wrong – all the tests came back negative; we know that there are false negatives and want to try to get a little more info from a gastroenterologist who understands the disease better than his regular pediatrician.  So for now he will stay on the diet…

But what is most confusing is the change in his health, if he is in fact not allergic, why is all this stuff getting better.  Which brought me to the conclusion that maybe gluten is just BAD for anyone.  After all “People don’t eat grass, cows do!”

Maybe everyone should cut down or cut gluten out of their diets to see if maybe, just maybe, what ails them may go away.

As I said, this is one yoda’s opinion, I am not a scientist or a doctor.   I do know, however, that cutting down or cutting out gluten is not easy and extremely frustrating.  I also know it can cause other problems due to the nutrional things that are missing in gluten free foods.  As avid readers of our blog know, I had a little problem caused by lack of fiber.

So I am not saying “do this now, throw out every bit of food with gluten in it”.  What I am saying is if you have an unexplained illness or are just feeling lousy all the time, maybe this may be an option that you want to explore.  But if you do decide to explore this option, do your research first and never do anything this extreme without checking with your healthcare provider first.

So, if you are looking for me, I will be celebrating Celiac awareness month by registering my new trademark – “People don’t eat grass … cows do!!”  Moo!

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