Here is my story:
When I was 10 years old, my dad told me that I had to help take care of my mother. She was sick and no one really knew why. She was told she had Parkinson's, Myasthenia gravis, Multiple sclerosis and several others. Though the years, my mom and I wanted to figure out what was going on with the family since so many others had similar symptoms. I studied Biology/Chemistry/Medical Technology to try to understand and figure it out. This lead me to massage, oils, herbs, supplements etc. Those modalities seemed to work best for mom. In the mean time, I was also starting to duplicate her symptoms and timeline.
When mom went in for hernia surgery, she was told her intestines were a mess and that she was a celiac, even though she had previously tested negative 5 times for it. The only instruction she was given was to stay away from bread. I did not know of this diagnosis.
I knew from my past and symptoms that when I ate simply, I felt better. My symptoms included passing out up to 15 times a day, migraines, muscle weakness, peripheral neuropathy and aches/pains and eventually seizures. Shortly after my cousin’s daughter was diagnosed Celiac, putting her information and my moms’ together, I also went gluten free. My symptoms decreased substantially. I talked with mom about celiac/gluten free during this process and was informed of her diagnosis of celiac 5 years earlier and that now she was having seizures too. She had no idea going gluten free involved more than “staying away from bread”. She hid her symptoms from others because she thought they considered her a hypochondriac and did not want to be a burden to anyone. This was about the time she went into a nursing home.
Since the seizures, mom had a harder time understanding things, especially about what she could or couldn't eat. The nursing home was very inexperienced in providing celiac safe meals. I brought food in for her, talked to kitchen, said NO snacks from cart and educated them as best as I could. Her health was completely depended on who was in the kitchen. I lived 6 hours away and couldn't follow through like I wanted. If she reacted with seizures, pain or mood changes etc, they just increase her medication and said she was combative, or “not herself today”. It was very frustrating to me to finally have information that could help her, but no one understood, or knew what to do with the information, including my mom.
That is where the labels came in. I thought the labels would let mom know that her food was safe to eat and that it would be a reminder to the kitchen that they had to get it right. Also, since I was living in a gluten environment, I used labels for my food and also labeled whatever got cross contaminated. The food pics helped with eating safely at large events and holidays.
As my symptoms became less, I realized there were other allergens involved, which is common for a celiac. That was why I started the allergy friendly labels. That way one label could encompass several allergens instead of 4 different labels. I also wanted to make the holidays a little more fun, especially for the little ones. I can't imagine how difficult it is for them and their families.
While my mother was in the nursing home, I kept taking my new ideas and labels to her. I told her that “we have done it –we figured it out” and that she was my true inspiration of the labels and that everything she went through in this life was not in vain. Because of her, we are going to help people and families have a better and safer life. She has been and always will be my partner in this mission.
My mom, Marian “Kemnitz” Schultz, passed away December 23, 2014. I will always love and miss her, but our mission continues.
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