Tag: celiac disease

Wait-barley free means no beer . . . Right? aka A Chemistry lesson for a Birthday present

So let me first answer the question:

Wait-barley free means no beer . . . Right?      

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 This is the first thing people ask me when they find out about my allergy. It was hard news for my ex-bartender boyfriend (now husband) from the micro-brewing region of Oregon. Suddenly I could no longer enjoy a dark cold brew with him at a local pub.

When we go out to pubs now I am lucky if they serve hard cider. (My favorite by the way is Woodchuck) because sometimes wine just doesn’t pair as well with pub food.  Fortunately the gluten-free fad has grown like a wildfire.

Unfortunately many gluten-free beers taste like the cheap light stuff you might encounter at a college party.

One of the only gluten-free beers I have liked was at the Deschutes Brewery and Public House in Portland. We went there on our honeymoon and they have an amazing gluten-free menu (trust me and check it out!)

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Inside the Portland Public House
Inside the Portland Public House

But getting that beer across the country is a little tough. The only other options widely available are Redbridge (Budwieser and I don’t like there regular beer so . ..  yea) or Omission.

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On our honeymoon we also went to the Windmer Bros. Gasthaus Pub  because they listed two gluten-free beers (called Omission) and a gluten-free menu (the buffalo wings were pretty good). When they brought my beer to the table I read the label-it had barley in it! See they played with the chemicals and came up  a low gluten beer so it will not upset the stomach of someone with celliac’s disease.

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So now what? Well I do have some half decent gluten-free beers at our local grocery store (all ambers) or  . . . someone can start a new hobby (now I’m getting to the birthday part)

My allergy is actually a good excuse for Luke to start a hobby one of his best friends had been doing for years: home brewing. So two Christmas’ ago Luke got a beer-making kit with plans to make homemade barley-free porters and stouts. But with a wedding, new job, and moving Luke hasn’t started up home brewing. . . yet.

Here we are: A chemistry lesson for a Birthday present:

So I took Luke for his birthday to Rohrbachs brewery and taproom in Rochester NY hoping it might help jumpstart his creativity.  We started our tour watching a video explaning the history of the brewery meanwhile Luke enjoying a few samples on tap (5 bucks for tour and 6 samples 🙂 ).

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The taproom
The taproom

Then we were taken back to the brewery.  The tour was a full on chemistry lesson! I followed along as they explained the steps for making different beers the best I could, after the 5th step my mind began to drift-but not Luke. He was fully engaged-raising his hand as if back in chemistry class to ask specific questions. It was informal, informative, and best of all Luke loved it.

The tour
The tour

We then took some time to drive (I drove) around finding where the science museum,  parks, auditoriums, observatory etc. were since it was our first time downtown.

After we went to Rohrbach’s brewpub across town for dinner.

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We ordered off their traditional German Menu : Luke ate the sample plate of juicy sausages and sauerkraut while I had crispy potato pancakes with applesauce (can you say yum!). To drink I ordered their homemade root-beer. It was dark delicious dessert in a cup and amazingly I could taste the sasporilla!

And Luke, well he got another sampler of beer, this time of their speciality dark brews only on tap at their microbrewery.

And boy was he one happy birthday boy can you tell?
And boy was he one happy birthday boy can you tell?

Hopefully now that Luke has been inspired, the home-brewing will start soon . Don’t worry I’ll fill you as we go along.

Posted on by 1amanda412 11

Why I am Barley-free: Part Two

I thought my skin issues were over after the Philippines, but I was wrong. As I said in Part One of this story the bug-bites were only the beginning. I had only connected the borders to the puzzle-it was time to begin to separate the colors,  shapes, and fill in the middle.

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Not long after the summer of 2007, I notice the skin breaking out on my arms, neck, back, chest and sometimes my face. It looked almost like ache but itched like a rash (much like the bug-bites did). It got so red and inflamed I began to wear long sleeves, scarfs, and higher cut tops even in the summer. I feared it was a foreign staff infection similar to what I had in the Philippines because it grew worse in humidity and irritated areas were warm to touch.

I began to inconsistently seek medical help, mostly when I had holidays and summer visits back to California. The doctor that cared for my initial staff infection referred me to a dermatologist. That dermatologist struggled to diagnose the problem working with several theories and  numerous forms of antibiotics, topical steroids, and even cortazol shots. She concluded that it was a manageable but not curable hair follicle irritation. We were not convinced by her diagnosis and eventually decided to seek other help.

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After I moved home from college I decided it was time to get to the bottom of this issue.  I was tired of hiding. So I decided to see a different dermatologist.

They unfortunately had even more crazy theories. I was told I could have an sun allergy, or even an auto-immune disorder including celiac disease. I and the rest of my family considered the possibility of celiac disease since my cousin and grandmother had recently been diagnosed but all specialist appointments and blood work came back inconclusive or negative.

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This dermatologist even took several biopsies of the irritated bumps on my shoulders. These biopsys required circular cookie cutter punctures and stitches which I still have scars from.
The Nurse Practitioners who I worked with (I rarely saw the dermatologist himself through all of this) eventually gave up trying to find the root of the problem. They determined that I had an unspecified form of dermatitis and started appeasing the external side-effects. This once again led to a variety of of steroid creams, antibiotics, topical gels, etc.
 These three years were all apart of that process to fill in the middle of the puzzle. Just when I thought I had found the right place for that awkward piece it wouldn’t fit so I tried another, and another. It  was annoying, embarrassing, and frustrating but the worse was still to come.
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(Don’t worry this all has a good ending-stick with me for one more blog and it will all make sense).

Any of you ever had to deal with the run-around from doctors?

Struggled with a mystery diagnosis?

Get anxious having to go back again and again to the same doctor’s office?

Posted on by 1amanda412 3