My Story

**2020 Update on bottom**

    

     For as long as I can remember, I've been dealing with a chronic internal battle with my body.  I was simply unwell for years and didn't realize that it was because I was eating food that "normal" people eat every single day. It was only in the last few years that I finally discovered all of my symptoms were directly related to being intolerant to different foods, particularly gluten. People with gluten intolerance (or other food intolerances for that matter), who eat gluten knowingly or unknowingly can cause the manifestation of a wide variety of symptoms. A cruel twist on this fact is that by the time the symptoms are noticeable, there has likely been damage done that cannot easily be reversed.  According to Gluten Intolerance School symptoms may include, but are not limited to:

• digestive problems
• fatigue
  
• brain fog
  
• joint pain
• inflammation
  
• trouble breathing
  
• heart palpitations
  
• skin rashes
  
• hormone imbalances
  
• migraine headaches
  
• dizziness
  
• feeling off balance
  
• mood swings
  
• ADD
  
• depression
  
• anxiety
  
• schizophrenia

For more information about how gluten intolerance causes these neurological disorders see the study published in Psychiatric Quarterly.

     This is my Cinderella story of how I displayed almost every one of these symptoms, and changed my life for the better...

     My mom once told me she knew I was lactose intolerant from the time I was 11 months old. A diagnosis that my pediatrician at the time confirmed. After continuing to complain incessantly that I always had a stomachache, and after trying a number of different relief methods, she took me to an allergist when I was four years old.  The results of that allergy test (before they really knew about the dangers of gluten for certain individuals and all of the different other intolerances and allergies we know about now) was that I was "allergic to milk."  My mom was always great about finding substitutes for me to eat. I drank Lactaid milk (which actually contains lactose) and ate Tofutti Cuties as an ice cream substitute. I felt better, but never felt quite right.

     Fast forward a few years...

     I started introducing milk back into my diet because of some information I received about adults growing out of their milk allergies.  I remember starting to eat a bagel with cream cheese and ice cream for breakfast, often. I would put milk in my coffee, which I drank every day for over 10 years. I thought I was fine even though I was always just a little bit sick and sometimes nauseous. I thought everybody got sick when they ate, and as long as it was tolerable, people dealt with it.  Only recently did I first understand the difference between normal fullness and abnormal illness in response to eating.
        
      Over time I started developing other issues. Throughout my childhood and into adulthood, I had skin rashes on my hands and face. My skin would crack and peel. My mom brought me to a dermatologist, who simply diagnosed me with “eczema.”  I had prescription strength steroid cream to put on the affected areas, and while it got better, it was not a permanent fix. I could never sleep and could barely wake up for school.   The next malady in the timeline was that my knees and the bottoms of my feet started to hurt. This brought me to an orthopedist, who discovered I lacked cartilage in my knees causing the bones in my knee to grind against one another painfully. This issue later required physical therapy sessions to strengthen my knees.

     In 2003, at the age of 17, I vividly remember going to lunch and then returning to class only to find the room spinning. I wasn't actually dizzy, or falling over,  but my vision was completely messed up. I remember being able to see the teacher in the front of the room, but the entire room was moving.  This became a common occurrence.  Things went downhill from there...

     My knees started getting worse to the point where I couldn't stand for more than 5 minutes or walk up stairs without being in excruciating pain. I couldn't take a shower without having to sit down halfway through and my entire body just radiated pain all of the time. Between the shooting pains from the base of my head to my shoulders to the migraines I suffered almost every day, I was frequently brought to tears because I couldn't take it any longer.
 
      Throughout all of this I finally started to realize there was a connection between what I was eating and how I was feeling.   I went back to a variety of doctors, including an allergist, ophthalmologist, two different neurologists, infectious disease doctors and had a battery of tests...  MRIs, various EEGs, multiple brain scans and absolutely no results. One doctor diagnosed me with vertigo and sent me to physical therapy. I made no progress even after six months (because I didn't have vertigo). I tried acupuncture for my pain and vision, which also yielded no positive results. I tried a chiropractor for my pain, and nothing. Then I finally went to a neurological ophthalmologist who diagnosed me with a rare vision disorder called Visual Snow. It's a disorder in which your vision looks like an old TV screen like when you used to say that the TV screen had "snow" on it. Finally, there was something that at least made sense to me.  Unfortunately, there is no cure and they are still just learning what causes this to happen, but I did learn eventually how to make it better, as you'll read in the next few paragraphs.  There was still no mention by any specialist though regarding the link between symptoms and my diet. You can learn more about visual snow and see a simulation of what I see here.

Visual Snow             Eye on Vision          Vision Simulations  

     With everything that was happening to me, I naturally started having severe anxiety and feeling truly depressed. I was always extremely tired and would fall asleep in the middle of the day, or worse, in the morning while driving to work. I fell asleep at the wheel one morning and actually hit the wall on the parkway I was driving on. By this time, in 2008, I was in my first year teaching and it was by far the most awful year of my life. All of the physical, emotional and psychological pain was worse than ever and because my job was incredibly stressful that year, it  made it all the more difficult to cope with. I was still living at home and remember having dinner one night with my mom and my boyfriend at the time (now my husband).  I just started crying hysterically right there at the dinner table. I was in so much pain I couldn't even sit down for a meal and I knew deep down that no matter what I ate, I would worsen my symptoms. 

     I went to yet another doctor and I explained my symptoms, including how I was internally shaking every time I ate. The doctor was a gastroenterologist and tested me for Crohn's disease, Celiac Disease and anything else he thought I might have. Of course everything came up negative.  He gave me medicine though and said, "This is for your stomach, take it when you feel like you're going to shake.”  I took it home and I tried it, but it didn't work. I went back to the doctor and his next step was to send me for a psychological evaluation. Another dead end...I didn't go back to that doctor again.  Months later my husband was looking through the desk and found the 1/2 full pill bottle with my name on it.  He asked me when I had started taking anxiety medicine. The gastroenterologist's name was on the bottle and it occurred to me that he thought I was mentally unstable and prescribed Xanax to me instead of trying to figure out what was really wrong!! 

        
      At that point I gave up on going to doctors, and was extremely frustrated. I started doing research on my own and I tried to make a connection between what foods I was eating and when I was experiencing symptoms.  When I would eat bread with butter I would shake, so I stopped eating butter. When I ate tomatoes my ears and nose would get red, so I stopped eating tomatoes. When I ate potatoes I got dizzy, so I stopped eating potatoes. I stopped eating foods I thought were causing my symptoms, and felt a little better, but I was only scratching the surface. I tried to make connections between the foods I was eliminating...were they related in some way?  At one point I thought it was foods that were highly acidic, at another point I thought it was foods that contained lectins.  Then one day, in 2010, at the age of 24 I decided I was going to stop eating gluten completely. Within TWO weeks my symptoms started improving. I stopped getting migraines every day, the pain in my body was slightly alleviated, I was more alert, awake and my vision was improving. This improvement continued but eventually plateaued.  I knew gluten was definitely a problem, but it was not the only problem.

     I again tried to figure out by myself what foods I could and couldn't eat through an exhaustive trial and error process.  Years after I stopped eating gluten, a nutritionist convinced me to see a doctor in Manhattan.  This one doctor, a DO, who is absolutely amazing, sent me for a great, albeit expensive, out-of-pocket blood test called the ALCAT test. It tested my personal reaction to 200 food sensitivities, food additives, molds and environmental factors that could be causing me to have reactions. The doctor took blood work, which took about 5 minutes and gave me results that changed my life.  I now have a comprehensive list of 200 foods including foods that I am highly sensitive to and foods I actually can eat with no reaction.  Finally, as of March of 2014, I am no longer in excruciating pain, I do not get migraines anymore, I am awake and alert all day, my vision is better, I no longer hallucinate or see things moving and my skin issues have all but disappeared.

     Over the past 5 years I  have learned how to cook and eat very differently than I ever did before. If any of the story I shared sounds familiar to you, I am happy to share everything I have discovered through this blog.   I hope it provides awareness and solace for those going through anything similar to what I went through. I hope this website and my recipes can provide an outlet for those who feel as frustrated as I have throughout my life. It has been a long journey and I'm happy to share it with you.  This is my Cinderella story.  

  

Love,
Cinderella

2020 Update:

     In 2019, I went through another slew of tests after I still wasn't feeling well. I was still in pain, still so tired, still had stomach issues and just generally did not feel right. I went back to a new neurologist and a new gastroenterologist. I had an endoscopy, colonoscopy, MRIs, nerve tests, blood tests, etc. And again, everything came back negative. I still did not give up, I still knew something else was off. I started the keto diet and my stomach issues started to keel better again. I lost some weight and felt a little more on track, but I was still in so much pain and I still felt like my whole body weighed 1,000 pounds. I still felt depressed and anxious all of the time. Then off to a rheumatologist, where I was finally diagnosed with Fibromyalgia. This was probably the diagnosis I needed back in 2008, but at least we got here today. Fibromyalgia is a neurological disorder where your body tells you you are in much more pain than you actually are. My brain's response to pain and that emotion linked to pain are not typical. I am now on mediation and visit the rheumatologist every three months to get bloodwork and monitor my pain. This medication not only relieves my depression and anxiety, but it GREATLY relieves my pain. I finally feel seen, heard and understood by a doctor. Things are finally falling into place. Never give up and keep trying that shoe on in different places until it fits! 

Love again,

Cinderella