My wife is the Pretty Little Celiac and this is our Celiac Journey…

The Trophy Husband

Diaries of the Pretty Little Celiac’s Husband

“Watch the cart” This is the first thing that comes to my mind when I think of Rebecca and her relationship with food. There are too many times to count when we would be speeding home from a night of eating out, screaming at me to go faster or she was going to “bleep her pants”. One time in particular, I had marks on my shoulder when she was grinding her nails into my shoulder as I was turning the corner, coming into our sub-division. We were forced to stop behind a car of an elderly couple who seem to be lost and to my dismay going under 10 miles per hour. I can’t even count how many times this happened. For a while, we would go to the grocery store immediately after eating out. Within 5 minutes of arrival, somewhere between the produce and bakery (rather ironically), she would eventually tell me to “watch the cart’, and she quickly walked to the restroom to ‘check out the facilities’. What was tough for me to understand was the relationship between what she was eating and her sometimes explosive reaction to the food. She would have what we thought was a very healthy dinner, chicken, veggies, whole wheat bread… explosion.. Then we would eat something that would be considered bad or greasy, like cheese fries or nachos loaded with cheese, and nothing. It was like trying to dodge land mines, but they were invisible or at least mis-labeled.

I Have Allergies too!
To give this some perspective,I have always had an allergy to nuts, more specifically, tree nuts. I have been to the emergency room about a dozen times in 30 years. If I have something with nuts in it, I have an immediate reaction. My reaction is much more severe than what Rebecca has with gluten. Certain nuts, if I ingest enough of them, will swell me up to the point where I will not be able to breathe, and die within minutes. Other nuts will give me hives so bad that I become almost unrecognizable. That being said, I find my allergy much more manageable than having celiac. Why? I pretty much know what food has nuts and what doesn’t. Nut allergies are well established in the manufacturing industry the labels on food are done in a way where there is no ambiguity, which I think has to do with the severity of the allergy. If someone eats a product that has nuts but it was not on the label, and dies, the lawyers come in. In the case of Gluten, if gluten is in a product and it says it is ‘Gluten Free’ and it irritates my stomach, it is pretty hard to sue for that. How could you prove it? I can’t even picture how that would play out in court!

In restaurants, it is very easy to find out what has nuts and what doesn’t, most of the time you can see them and there are well established foods that I know to stay away from.. IE Chinese (cooking in nut oils), desserts with walnuts, pecans , cashews…. For gluten, it’s not that straight forward, even to the most veteran celiac. We typically get looks of confusion if Rebecca asks if an item has gluten or not. Sometimes the quick response of “no’. That is even more concerning, since it is hard to determine if the waiter waitress is truly understanding the question. Lastly, the reaction to the gluten is not as automatic as the nut allergy. I am so sensitive to the nuts, I can of just smell them in the food and know. One bite (not even swallowing) and I immediately know. With gluten, sometimes it happens hours later or at times…days…so there is no immediate feedback. The gluten reaction can also be days in length, and can be one of many things for Rebecca. Mostly notably multiple trips to the bathroom. I know way more about her poop then I would ever care to admit.

More than that, it negatively affects her mood, her joints and at times our relationship. Damn you gluten!

The Experiments
Now that she has found out, initially there was a sense of relief. However, quickly a hard realization. Things that she loved to eat were slowly poisoning her. It has been tough. It is tough for me to find the correct way to support her in these struggles. I am a problem solver at work, however, in my experience with Rebecca, it is best to give her unconditional support and someone to listen to ,as opposed to offering any solutions. I don’t have to live with this condition, and I am learning along with her. I don’t have to live with the mistakes or mis-steps that happen along the way. The first few months she stuck to the four of five things she liked and could eat…but those would quickly come and go… Chipotle for a month, then Noodles and Company… then Annie’s Gluten free Mac and Cheese. Trips to gluten-free bakeries, gluten-free bagels, pizza.. some of it will disintegrate in your month… some of it was actually better than the gluten-free product, but you always pay 2x as much for it. We continue to find things we like, and don’t. Rebecca is very vocal either way.. no ambiguity.

How it affected me and my own weight struggles…
One unintended side effect of the discovery that Rebecca had gluten, was that it had positive effects on my health. To be supportive, and also because  I didn’t want to make two different meals (yes, I am the cook in the house), I began eating mostly gluten-free. I have struggled with keeping my weight down, and in the past I combated that with working out more and eating less of the foods I really enjoy! I was smack dab in the middle of one of my most ambitious cycles to get in shape. I was working out, sometime 2x a day, and I was actually gaining weight. The I had started to eat the gluten-free diet, again, the reason of convenience and sanity. I first noticed more energy in the afternoon while I was at work.

Before this, energy from caffeine was the only way I could get through the afternoon. But after eliminating the majority of the gluten in my diet, I was feeling more energetic and didn’t feel I needed caffeine in the afternoons. I began to feel as if there was something to this. I have now embraced eating this way, as well as more small improvements, and have lost 27 pounds in 12 weeks. I am working out less than once a week and not counting calories! My body seems to respond better to not having gluten, and I have never felt better and more energetic.

How I am trying to help…
I listen, I empathize and I learn. As mentioned before, I was not familiar with Celiac disease and gluten. In fact, my knowledge of truly good nutrition was greatly out of date. I have spent the past 5 months researching nutrition and in particular how it affects us on a daily basis. There are great resources on the internet. I particularly like some podcasts I have found on iTunes (search the ‘Health’ category). I listen to these on my to work or when I have the time. Rebecca and I have listened to them on the way to and from some our trips and we have found information that is consistent with what she is experiencing. Cooking for Rebecca continues to be a learning experience. We are constantly trying to find ways to cook the foods we like in a gluten-free manner. Sometimes is works, sometime it doesn’t, and we have to eat the failures. I know immediately if Rebecca doesn’t like it, and we now have at least a few things we can eat consistently. For the most part, we don’t eat out, and when we do there are specific restaurants we target.

What’s next?
We continue to try to find ways to have a lifestyle that we both enjoy. We have had many ups and downs.. mentally, emotionally, physically.. those won’t stop, at least not in the short-term. We are doing it together, but we stumble. She has to live with her body and it’s crankiness, but I see it getting better, although some days there are setbacks. We now celebrate eating out and not getting sick, we celebrate finding a pizza crust that is close to what she used to experience. We celebrate normal bowl movements… yes I said it.

Rebecca started her blog to help people find those little celebrations, to dodge the pitfalls she has found, and to inspire those who have this disease. She is also are looking to collaborate and learn from those who are fighting to maintain a normal and happy life. One day at a time, one meal at a time, we will get there.

Aaron

 

 

  • Becky

    It was as if you were writing about my life! Thank you.

     

    • PrettyLittleCeliac

      You are so welcome! Thank you for stopping by and I just plan on posting more and more…. Stay tuned and let me know if you’d like any specific blog posts…
      Rebecca

       

  • Victoria Rutigliano

    I have a VERY similar story as well. It took years for me to get diagnoised. So great that you are spreading the word to help others. This is a great website.

     

    • PrettyLittleCeliac

      Thank you Victoria for stopping by and I’m thrilled you enjoyed my website. That was the whole point in doing it to educate people. Did they say you had irritable bowel syndrome too?

 

Celiac and Depression

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This was a post written back in July 2012. I’ve since had major improvements but I think it’s important to show the history and seriousness of this disease.

I’ve never been one to hide my feelings or shy away from what is going on my life. I think there are so many other people that could benefit from knowing they aren’t alone and share in the same situations that it’s important to stay true to yourself and others. That’s why I’m writing this post.

If you’ve been following me for a while, you know I’ve had several set backs over the years. I had a miscarriage that was very difficult for me, I found out I suffer from Celiac disease, I went through tremendous hurdles to get my business up and running and I left my full time job to follow my dreams. There have been other things that went on of course over the past few years but these are the notable major events.

For the last few weeks, I’ve found myself watching more television, sleeping more and generally being more irritable and cranky than usual. My level of excitement and enthusiasm was down and I’ve been struggling with staying on track or focusing on goals. It was when I told my husband I was sick of talking about Bexa that I knew something was wrong. I found myself going up there less and struggling to get motivated.

That’s when I realized  I’m suffering from depression and anxiety.

I found a therapist and started going last week. Just in two sessions I already feel better and more up lifted. Heck, I’m even writing this post which is a great sign. Sometimes I think because I spent 7 years in the social services world and around counseling all the time that I’m immune to needing their services.

Depression comes in many forms. As a society, we are prone to thinking depression comes in the form of locking ourselves in a dark room, under our blankets and not coming out for weeks. Or in the lovely commercials for pharmaceuticals, we are restlessly staring out into the rainy weather wishing we could just gather our spirits to enjoy the day. Believe it or not, you can be depressed and still live a functioning life. The symptoms are so different for people, you have to know and understand your own behaviors in order to recognize the signs. For me, I needed a 3rd person professional for me to understand I’m not crazy and these are normal feelings I’m having for the circumstances right now in my life.

WebMD is a great place for resources on finding our more information on how you are feeling and when to seek help. There are a number of supplements that relieve anxiety that I had no idea about! Check out what they said below regarding Anxiety and Depression.

What Are the Symptoms of an Anxiety Disorder?
Symptoms vary depending on the type of anxiety disorder, but general symptoms include:

  • Feelings of panic, fear, and uneasiness
  • Uncontrollable, obsessive thoughts
  • Repeated thoughts or flashbacks of traumatic experiences
  • Nightmares
  • Ritualistic behaviors, such as repeated hand washing
  • Problems sleeping
  • Cold or sweaty hands and/or feet
  • Shortness of breath
  • Palpitations
  • An inability to be still and calm
  • Dry mouth
  • Numbness or tingling in the hands or feet
  • Nausea
  • Muscle tension
  • Dizziness

While I don’t have all of these, I have enough of them to then turn around and cause me to have depressive symptoms as well.

Major Depression: What Are the Symptoms?
Depression shows itself differently in different people. Common depression symptoms are:

  • Depressed mood, sadness, or an “empty” feeling, or appearing sad or tearful to others
  • Loss of interest or pleasure in activities you once enjoyed
  • Significant weight loss when not dieting, or significant weight gain (for example, more than 5% of body weight in a month)
  • Inability to sleep or excessive sleeping
  • Restlessness or irritation (irritable mood may be a symptom in children or adolescents too), or feelings of  “dragging”
  • Fatigue or loss of energy
  • Feelings of worthlessness, or excessive or inappropriate guilt
  • Difficulty thinking or concentrating, or indecisiveness
  • Recurrent thoughts of death or suicide without a specific plan, or a suicide attempt or specific plan for committing suicide

Depression Treatment: When Should You Get Help? If you have five or more of these symptoms for most of the day, nearly every day, for at least two weeks, and the symptoms are severe enough to interfere with your daily activities, you may have major depression. It’s important to speak to your doctor about treatments to start helping you feel better.

Thanks WebMD – Back to me…

My depression and anxiety come in the form of agitation and frustration along with repression and denial. In therapy, I learned that frustration is just a nicer word to use to mask your true feelings. And this is completely true. So while I do have some of the symptoms listed above, I also have my own personal symptoms that are unique to me. The only way I would have known this is by going to a therapist.

Part of my issues revolve around being my own boss. I honestly don’t think I am living up to my own expectations and it’s frustrating for me. I’ve gained a little bit of weight and am really struggling to get back on track. I know, I know. I still look great is what you will all say but you have to remember that perception is reality and I perceive myself as out of shape and not where I want to be. I’m not as strong or fit as I used to be, I struggle with having Celiac and honestly I’m angry about having Celiac. 2 therapy sessions and we’ve narrowed it down partly the business and compounded by my complete and utter anger in having Celiac and how it affects my life.

I think I’m different in the sense that I’m still optimistic and working towards my goals. I don’t feel hopeless. I don’t feel like a failure. I don’t feel discouraged about the future. I’m just sad right now and am working to get out of this funk. I’ve decided against medications because I want to deal with this the right way and fight through instead of masking the symptoms with pharmaceuticals. While I understand some people believe in them, they just aren’t’ for me at this time. Please understand I am not saying people don’t need them or use them for a benefit. I’m just choosing to handle mine in a different manner.

I could go on and on in the post about where I am right now or how I’m feeling but the real purpose of this post is to educate people in symptoms and signs of depression and anxiety and how to ask for help. I found a therapist provider that offers my insurance on the Psychology Today’s website. I liked her bio and what she said she believed in for treatment and I followed my gut instinct. I think I picked perfectly.

Many times you will see my posts on Facebook and think I’m speaking to you. Actually I post things that are meaningful to me and if I write them enough I will believe them and keep working toward my goals. I fall off the wagon. I struggle with eating and fitness. I struggle with relationships and my job. I am no different than anyone else. I just choose to present myself differently and focus on the positives and getting over hurdles. I never really understood the point of dwelling in the negative. Everyone has choices in their life. Sure, they have consequences but you have weigh them against what you really want. Sometimes you just have to realize what is important to you and live your life to the fullest. The only person living your life is you.

So, how do you go about finding a therapist? Start with your insurance company list of in-network providers. If you feel comfortable, ask around to friends, networks or colleagues. No one has to know you are looking for yourself. Do a web search and find their bio’s and descriptions of how they treat their patients. What is their methodology? Do you want someone that shares your religious beliefs?

When going to find a therapist, make sure you feel totally comfortable with them so you can get the most out of your treatment. You won’t get anywhere by forcing yourself to see someone you don’t connect with or that you don’t think can help you.

Find a support team to help you, even if that person is just there for you if you need to vent or discuss your ideas/thoughts. I like to go somewhere and be alone after my sessions. I take notes from them and then plan on how I can improve or make changes based on what we discussed in our session. There is no shame in needing help.

The bottom line is that everyone goes through crap. It’s how you handle that crap that makes you unique. Some people choose to wallow in their pain and try to make everyone else miserable with them. Some people choose to lock themselves in their house and isolate for a while. Some people choose to live on and rock on despite struggling and get the help they need. Just know that no matter where you are or what you are feeling, there is someone out there to help you – you just have to be ready and willing to ask.

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Abby

Hi Rebecca, I am 24 newly married (June 9, 2012 to an amazing guy who i have been with for almost 9 years) and I wanted to write you a comment to simply say Thank you. Thank you for being so amazingly honest and genuine with what you write on your website. I was feeling so sick yesterday and down in the dumps when I came across your webite and after reading it I felt like for the first time in many years that I was not alone anymore, like WOW there is somebody who knows and truly understands all the pain, depression, anxiety, just all the symptoms caused by celieac that can take over the better part of the day. I was diagnosed with celiac about 6 months ago. I have been struggling so much with how to make gluten free my new lifestyle and after reading so many great topics on your website I am beginning to have a whole new outlook and instead of spending more days feeling sorry for myself I am looking forward to keeping up with your website and staying positive and feeling that Im lucky that I now know what is wrong and that I can be in control and make things better! Thank you so much for this website!!! Best wishes…Abby

 

  • PrettyLittleCeliac

    Hi Abby!!

    You literally just brought me to tears! THANK YOU THANK YOU for writing this post. It makes me feel so good and warms my heart that I can help others in similar situations as myself. I think we all just get too caught up at first with the diagnosis and nobody really ever breaks it down for you into a all the pieces and parts of your life. Your life is what you CHOOSE to make of it – so we can be down in the dumps or put the dumps in our trunks and move it on outta here 🙂

    Rebecca