Friday, March 21, 2014

Sifting Through Life: Tears of Joy (Rosacea Diagnosis)

Finnley and I on a walk.  When ever my picture is taken my nose is bright red.  I always try to edit this in photoshop but it is hard to do with every picture.

Yesterday I sat in the office of Dr. Ellen, who is my dermatologist, and cried.

At first I was stunned with her diagnosis, followed by anger and then joy. This is when the tears slowly started to fall.  One by one I wiped them away a bit embarrassed.  I kept apologizing for being in such an emotional state.  She was kind and gentle and probably had no idea why I would react to being told I had rosacea.

Truly the tears that were falling were indeed tears of joy.

I have been on a journey the last four years that has left me confused, frustrated, searching for answers, crying, angry, and at times, even embarrassed to leave my house.  Embarrassed to take my daughter to her gymnastics class for fear of what others would think of my red face, blistering cheeks and my chin throbbing with little red veins.  My face literally hurting and swollen and there wasn't any amount of makeup that could cover up what I was experiencing on a bad day.

To give you a bit of back story--

In April of 2011 I became very ill.  I learned that I had a lump in my breast that needed to be addressed along with being told I had Celiac Disease.  The months leading up to April I spent researching and trying to find out what was wrong and why I was slowly going downhill with my health.   Of noted concern was the redness, swelling, veins and blotchiness on my face.  I was convinced at that time I was suffering from Rosacea and visited a dermatologist in Park City, UT.

This doctor spent less than 3 minutes in the room with me and said I was suffering from sun damage.

He left.  The end.

That was four years ago.

Isabella and I.  Another way I would try to cover up the red is by applying fun filters to the images.  It usually washes my face out enough that the red is not visible.

Now do you see why I was a bit angry yesterday?  For four years I have been under the impression that all of my symptoms with my face were directly related to the Celiac diagnosis of which I am starting to have my doubts about too.   The reason I am doubting this is because some of the same triggers for rosacea (food intolerances) are the same with celiac.  Over the last 3 months I have been doing my own evaluations at home with certain types of food.  I have been listening to my body and noting the reactions and non reactions.  This has included eating wheat.

My family knows immediately when I start to react to anything I eat--my face turns bright red.  I have set off a trigger that is causing my skin to become inflamed.  Triggers are associated with Rosacea.   The amazing thing is that there were times when I ate something with wheat and never reacted--nothing!  Yet, other times my face would sting and small nodules would erupt on my cheeks instantly.

When I was pregnant with Finnley I often found myself starving.  Salads just weren't cutting it and so I started eating a sandwich here, some homemade pasta once in a while, and occasionally a slice of pizza.

 I felt so guilty doing this.  I felt like a hypocrite.  How could I write a blog filled with gluten free recipes and eat wheat (gluten)?

Drake and I on my birthday last year.  The flash caught the red again on my nose and chin.  I wear makeup that covers the red most of the time but it is not a great protection from camera flash.

So I made a decision.

I would eat wheat on rare occasions, keep a record and go and get tested again.  Something was not adding up.  The doctor that did the original blood work called me the day after my test in April of 2011, told me his diagnosis and we never talked again.  Everything that I have learned along the way I have learned through blogs, books, and friends.   I did seek the counsel of a gastroenterologist.  At the time I was gluten free for four months and feeling really good.  He mentioned that in order for the endoscopy to be performed that I would need to start eating wheat again.  His recommendation was that I just stop eating wheat because if it was working for me then there was no need to do any further testing.

Was I naive?  Yes.  I was overwhelmed with the initial diagnosis.  I was seeking for any type of explanation as to why I was not feeling well.  I was willing to listen to his advice.  What I should have done was seek out a second opinion.  I should have asked more questions.


While pregnant with Finnley I had outbreaks with my face.  I could go a few weeks with perfectly clear skin and then wake up with a reaction.  Some reactions were mild but others were quite obvious. What was the most confusing was during most of this time I was gluten free but still having the reactions with my face.  I never had the bowel problems or stomach bloating that is common with a Celiac diagnosis.

I became determined to figure out what was going on, again.  I had to listen to that small voice that kept having doubts.

I don't mind living a gluten free lifestyle but if I don't have to follow such strict guidelines, then I don't want to.  That is the honest truth.  My kids have been patient with me and they eat what I make but it is not always met with glee.   In fact they miss their favorite foods.

Rye and I.   Again my red chin is very visible but I did manage to edit the rest of my complexion so that I was not bright red through my cheeks and nose.  I use a smoothing brush (like magazines use).
In order for me to be reevaluated for Celiac Disease I need to be eating wheat.  It must be in your system so that the blood test can detect the necessary levels.  I am not a doctor and don't want to get too technical here so I am talking in very simple terms.

What did I learn?  First, that I didn't react when I ate wheat, specifically sourdough bread.  Not all sourdough breads are created equal and so I had to find the brand that worked for me.  Even more specifically I have been using Organic Sprouted Wheat, Jovial Wheat (Italian company) and Spelt (an alternative to wheat). I have also been making everything at home from scratch.  I could eat a donut and not react.  A hamburger and not react.  A slice of pizza and REACT.

What was it about the pizza that caused a trigger?  Red sauce and bell peppers.  I am extremely intolerant of bell peppers and tomatoes.  Not the crust-but what I was adding to the pizza.

I made eggs and added ham, onion, mushrooms and bell pepper (I have done this for years) and reacted.  I immediately thought I was allergic to eggs--it was the bell peppers.

Same thing with bananas.  I react every time I eat a banana.   All three of these things are food triggers for rosacea.  Now what is interesting is that I was already shying away from these foods before I started focusing on these foods as possible problems in my diet.  I don't like red sauce on my pizza and would ask for a white sauce.  I decided to eat my scrambled eggs plain.  I quit snacking on bananas.

Thankfully this guy loves me no matter what color my nose and chin are.  He always finds the sweetest things to say when I am having some of my worst days with rosacea.

My affiliation with food is becoming rocky again.  I am frustrated. On the bright side, it is not all food related.  The triggers for rosacea have many faces.  For this reason, I will be paying more attention to my reactions.

Is the weather a factor?

Am I feeling stress and anxiety?

Did exercising cause a trigger?

Is the makeup I am using causing a reaction?

This journey has led me down many paths and here I am again, seeking and searching for answers.  I feel that I am getting closer to finding out what is going on and this diagnosis makes sense to me.  I started using the gel that Dr. Ellen has prescribed and I am noticing a huge difference already.  The pill that I take each day will keep it under control.

I have been using this sight to help answer the many questions that I have had about rosacea.  It is the National Society of Rosacea.

Do I have Celiac disease?  I don't know.  This is another honest answer.  My hope is that I can be retested in a few months and then make a decision about the future of the recipes on my blog.  I know that I will continue to post recipes that are gluten free naturally.  I believe there is a great benefit to limiting the amount of wheat in our diets and this will still be a focus for the blog but I may go back to posting a variety of recipes that represent both gluten free and regular dishes.

Please be patient with me as I try and figure a few things out.  I am sharing this because I know that I am not the only one who is feeling frustrated about their situation.  I don't believe I am the only one that has possibly been given the wrong diagnosis.  I know, from chatting with friends, that I am also not the only one frustrated at times with symptoms and reactions.

I went to the doctor yesterday for a mole.  I felt compelled to discuss the rest and I am so glad that I did.

By the way, the mole is fine.

Just a little mole-y!













2 comments:

  1. Wow, that's a lot. Hang in there!! You'll have the answers soon.

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  2. Thank you for sharing Sharron, I too have rosacea for many years now, I inherited mine from my fathers Scottish side. I have flare ups at times, and when I have a headache I am as red as a pepper! I can't even remember when I last had a clear face. I too have food allergies, that come and go over the years, funny how the body works. Hope you get the answers to all your questions, take care, and thanks again for sharing your story!
    ~Donika

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