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!!)

 

 

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?!

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!!

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