A response to the "You Don't Look Sick" statement about celiac disease...

I just read a blog post on the Gluten Dude's website titled "You Don't Look Sick" followed by a symbolic expletive. I've often used the actual expletive when I read about this topic. Here's an open letter to everyone who knows someone with celiac disease who just doesn't get it:

I'm sorry I don't look sick to you. I've had a lifetime of hiding the symptoms, and - let's be honest - you're not looking that hard. If you were, you would have seen the signs. For instance:

Did you see me sneaking away to the bathroom three billion times per day? That's what happened when I ingested gluten in any form.

Did you notice my ribs showing, because I couldn't keep weight on? How could I? I was pooping it out as soon as I ate, and none of the nutrition could be kept in my body because according to my colonoscopy report, all my villi were damaged or destroyed.

Did you notice that I weighed only 84 pounds when I was 27 years old and only 5 feet tall? They call that failure to thrive.

Did you notice that I couldn't think straight and was often confused or forgetful? It wasn't that I wasn't listening, it was the brain fog, one of the neurological symptoms of celiac disease.

Did you notice that I wore my pants loose because I was so bloated that I looked like I swallowed a beach ball?

Did you see me doubled over in pain with stomach cramps because I'd eaten something in a restaurant or at a friend's house that I was told was gluten free, but wasn't?

When I missed family functions because I was too damn tired, did you ever wonder why? Or did you just get pissed and think I was being a drama queen?

Did you ever wonder why I always felt so down? Do you think I enjoyed missing out on spending time with family and friends?

Did you think I should have gone out to a restaurant  or a friend's house for dinner and a beer when I didn't know if they had anything I could eat or drink? Why would I want to feel like a burden?

Welcome to my world. Thank God that I finally found a doctor who took the time to find out what was wrong. Thank God I was stubborn enough to fight for my health when the "new normal" was always feeling shitty - literally. Thank God that the treatment for celiac disease is a gluten-free diet, rather than pills that have the potential to create so many other health problems.

So before you go all Judgy McJudgy pants on me and tell me that I didn't look sick, ask yourself if you were really looking and listening, or if you just thought that if you couldn't see anything obvious, I must be faking or a whiner. I was just doing the best I could to live my life as normally as possible with a chronic, systemic illness.

I'm not asking for your sympathy. I'm just asking you for your understanding and for you to keep an open mind when confronted with something that you can't "see."

Rant over.

Traffic Light Peppers recipe for EvaRuth's blogger contest

TRAFFIC LIGHT PEPPERS
Traffic light peppers increase in heat from green to yellow to red. Green is mild. Yellow has medium heat, and the red is muy caliente.

Ingredients:
1 each medium red, yellow and green bell pepper
1 link mild chourico
4 slices center-cut bacon
½ bag of EvaRuth’s stuffing mix
2.5 tbsp. butter
1 c. chicken  broth
4-6 tbsp. tomato paste mixed into ¾ cup water
1 cup quinoa
2 cups water
½ tsp. red pepper flakes
2 tsp. hot chopped peppers sauce
2 oz. Gruyere cheese, grated
¼ tsp. salt

Directions
1. Heat oven to 400 degrees.
2. Cut top off of peppers, remove ribs and seeds.
3. Remove chourico from casing and brown in a little olive oil in a non-stick pan.
4. Slice bacon into small pieces and cook in a non-stick pan.
5. Fill a large stock pot with enough water to cover three peppers, bring water to a boil, then add peppers and boil for 3 minutes. Remove and drain.
6. Heat butter and chicken stock to a boil. Remove from heat and combine with stuffing mix. Cover and let sit for 10 minutes.
7. Mix tomate paste and water; add to stuffing mix. Salt to taste.
8. Combine 2 cups of water and 1 cup quinoa. Heat to a boil; reduce to simmer 12 minutes or until done.
9. Divide the stuffing mix into three portions. The green bell pepper will be the mildest one, with the stuffing used as is. The yellow bell pepper will be a little hotter, so mix the red pepper flakes with second portion. The red bell pepper will be the hottest, so mix hot chopped pepper sauce into third portion.
10. Line the bottom of an 8x8 pan with parchment paper. Sit three peppers in pan, and fill the peppers 1/2 to 2/3 full with stuffing mix: the green pepper with the mild stuffing, the yellow pepper with the medium hot stuffing mix, and the red pepper with the hottest stuffing mix.
11. Fill the rest of the pepper with quinoa.
12. Top with grated Gruyere cheese and bake for 30 to 45 minutes.

I'm baaack!

After several  months of family issues and horror, I'm back on the horn with some gluten-free news for you.
EvaRuth's has some new offerings for us...
Check out this Sunflower Delight cupcake. It has a GF Oreo topped with frosting. So pretty and so delicious. And don't forget the awesomely cute Honey Bee cupcake, with vanilla honey frosting to die for and a cute little edible bee.

A&J Bakery has announced a new lemon bundt cake...oooooh. Oh, and chicken soup for those who don't feel like cooking tonight.

Keep tuned in, more great stuff is coming.

Check out my gluten-free column on independentri.com. It publishes the second Thursday of each  month in the "South County Independent" and the "North East Independent."

Healthy Villi Gluten-free Spring Conference is this Sunday!

The Healthy Villi Spring Conference is scheduled for this Sunday, April 28, at the Sheraton Four Points in Norwood, Mass.

The event includes a gluten-free buffet lunch and a keynote address by Dr. Ciarán Kelly from Beth Israel Medical Center. Attendees can choose to attend two information-filled workshops, and many vendors will be there with products to sample and purchase.This will be the largest celiac conference in all of New England in 2013.

For more information, visit www.healthyvilli.org, 

I am not my disease.

Hi. My name is Karen, and I am a…

Many times in our lives, we have been categorized – put into little boxes based on circumstances in our lives. We are identified by conditions or situations, whether it be our occupation, an illness like alcoholism or drug abuse, an abusive relationship, a physical or emotional handicap – we are labeled.

I remember being sick for most of my life. As a child, I had what my Grandma Governo referred to as my “sick headaches,” which I would in later years recognize as migraines. I didn’t eat that much, because I felt awful when I ate. When I was 27, I weighed only 84 pounds.

I knew something was wrong. I had seen doctors, told them my laundry list of symptoms: bone-weary exhaustion, migraines, intestinal cramping, diarrhea, bloating, mental fog – and those were just the highlights. My general practitioner recommended that I see a gastroenterologist, who diagnosed me with colitis. He wrote me a prescription for an anti-spasmodic for my colon, and put me on a daily dose of fiber. I continued on this regimen for 15 years, and it did nothing to alleviate my symptoms. My health continued to decline.

You don’t realize how quickly you become accustomed to adapting to a bad situation. Like a victim of abuse, you try to avoid certain situations that could put you at risk. As someone with a chronic intestinal issue, you make sure that you know where all the bathrooms are when you are going to be somewhere for more than 15 minutes. You gracefully decline social invitations to avoid embarrassing situations. You go to work because you have to, but you pray that the single-stall restroom is open so that you don’t impose your condition on your co-workers. You take copious notes, because your fuzzy brain can’t remember what was said in a meeting or what the person training you just told you about the new computer software.

By 2008, I was sick and tired of being sick and tired. It was time to take back control of my life. I decided to find a new gastroenterologist who would take my situation seriously. University Gastroenterology’s Dr. William Chen is my hero. During our initial consultation, I described my symptoms and told him that I couldn’t live like this any more. He agreed to start the diagnostic procedure, not relying on previous test results. Thank heaven I had good medical insurance, because there was a battery of testing, ending with an endoscopy. I’d had these tests before, but no one had done one simple test – the test for celiac disease. Dr. Chen almost didn’t perform the test either. He was ready to diagnose me with irritable bowel syndrome, but he asked me if I wanted to do one last test, although he didn’t think I had celiac disease since it was a relatively rare diagnosis. I remember our phone conversation. He told me that you could “knock him over with a feather” when he got the test results back. He told me that there is no cure for celiac disease, but that it is treated with a gluten-free diet. This diagnosis meant no bread, no pasta, no anything with wheat, rye, malt or barley. When I hung up the phone, I cried, but I also felt a sense of relief. I wasn’t crazy. My condition had a name: celiac disease.

Since 2008, I have had to learn to adapt to a gluten-free life. I’ve had to learn to look for hidden ingredients under unassuming names like maltodextrin, which is a chemical derivative of wheat. I’d learned how to avoid cross-contamination of my food, how to assure that I can eat safely in a restaurant and what vitamins and minerals I need to remain healthy. After only a few months of eating gluten-free, the mental fog started lifting. I wasn’t practically living in the bathroom anymore. No longer did my body feel like I’d been hit by a truck. I felt normal. After being sick for so many years, it was a strange feeling. When you have a long-term illness, you are so used to feeling awful that it becomes your new “normal.” Feeling healthier felt good.

I decided that I needed to educate myself. I found a support group, which has since disbanded. In February 2011, I decided to launch CeliacGirlRI, a blog dedicated to providing information, support and community to local people with celiac disease. The response has been overwhelming. Recently, Independent Newspapers gave me the opportunity to write this monthly column to share information on gluten-free issues and health. I am truly blessed to have these opportunities to share what I have learned. I take this responsibility seriously.

I am currently designing a website based on my blog for a multimedia design class at the University of Rhode Island. While discussing the project with my instructor, he made suggestions for my sitemap, which is the outline of the website. He readily admitted that he knows nothing about celiac disease, and then referred to someone who has to follow a gluten-free diet as a victim of celiac disease. He meant no offense, but I realized something. I’ve been attacked several times in my life, and I don’t go down without a fight. I am not a victim. I am not my disease. I am a survivor. I am a strong woman, who lives with a life-threatening condition. I am an advocate for gluten-free education and responsibility. I am a writer, a sister, a daughter, a friend.

Hi. My name is Karen, and I have celiac disease. I am not a victim. I am not my disease.

Reprinted from my "Against the Grain" column on gluten-free issues and Celiac disease. The column prints on the second Thursday of each month in the "South County Independent" and the "North East Independent."

Gluten-free Chinese from China Lake, Somerset, Mass.

It's true...you can get gluten-free Chinese food.
China Lake in Somerset, Mass., has an extensive menu, developed under the guidance of the owner of Healthy Haven, a completely gluten-free grocery store in Tiverton. One of the nicest things: they serve their gluten-free food in these cute shell-shaped dishes (or are they fish-shaped?). That way, your server and you can be assured that the dish is in fact, safe for a celiac to eat. How cool is that!

This selection was shrimp with peas and carrots over white rice in a sauce. Delicious!  NOTE: Make sure that you say NO MSG, just in case. Don't know about you, but MSG hits me just like I've been glutened. Slammin' headache for days, achy all over, etc...you know the drill.

Every so often, they hold a special GF buffet, where they have a large assortment of items, all GF! For more information on these buffet events, contact Kathi at Healthy Haven. To view a copy of the menu (as of April 2012), use the following link: https://docs.google.com/file/d/0ByxePbK9bdxnaW11ZHZYWnVRSDZFcFo4Yl9iREhEUQ/edit?usp=sharing

Sharing the gluten-free goodie love

HOPE YOU ALL HAD A GREAT VALENTINE'S DAY!

WHAT KIND OF SURPRISE DID YOU WISH FOR?

Here's a link to an article I wrote on gluten-free for Valentine's Day that appeared in the South County and North East Independent newspapers on their website:

http://www.independentri.com/independents/arts_and_living/article_1b17986a-23ba-5549-b223-47e66bd94b26.html

Cannoli cheesecake from Cucina Twist, South Kingstown

Cupcakes from Silver Spoon Bakery, East Greenwich

Gluten-free for Valentine's Day

Keep your eyes open for the Feb. 14 edition of the "South County Independent" and "North East Independent." "Against the Grain," my column on health, wellness and gluten-free issues, will publish in the Arts and Living section, and will focus on gluten-free for Valentine's Day. If you aren't in the circulation area, go to www.independentri.com and check it out there. I'll talk about gluten-free candy and highlight local businesses that are offering gluten-free specials for Valentine's Day.

Praying for a Christmas miracle

Sorry I haven't been very prolific this week. I flew to Georgia for the holidays, and I just found out that my dad is in ICU and has taken a turn for the worse. I fly out in the wee hours tomorrow morning, and any prayers sure would be appreciated. Have a happy holiday. Eat safe.

When celebrating Christmas means eating gluten-free - Independent Newspapers: Arts And Living

When celebrating Christmas means eating gluten-free - Independent Newspapers: Arts And Living

Check out these gluten-free Christmas ideas.