My Story

My Story with Gluten Ataxia (and other chronic illnesses)

This painting was based on a photo taken during what I refer to as my “rock bottom” week. It represents me at my lowest and most humbling moment

I’m writing this on March 1st, the day after rare disease day, 2017. I have 2 rare diseases, and multiple autoimmune diseases.  One of my rare diseases is also an autoimmune disorder. My doctor brother lovingly refers to me as a “train wreck”. (thanks bro:)

In 2003 I had my first bout with CFS or chronic fatigue syndrome.  I was abnormally exhausted, couldn’t heal after workouts, couldn’t wake up in the morning and felt like a microwaved corpse all day.  I was living abroad as an au pair and it was wreaking havoc on my ability to do my job and make the most of this experience.  At the time, the world barely had internet (this was the year I got my first digital camera- they were just available to the public!) but this new internet was functional enough for me to research and look for answers.  At that time, the holistic medical community suspected that CFS was a suppressed immune system.  So I focused on boosting my immune system with sauna, raw vegetables, and lowering caffeine.  It seemed to work. I also went on an anti-depressant (again) and took up yoga (since that was all I able to do workout-wise– mostly stretching).  I realize now that this “bout” with fatigue was just a continuation of a long history of decline.

This long history of related problems culminated when I “got” my first autoimmune disorder in 2009 when I became celiac.  I had been warned that it was coming the year before (2008) and so I went gluten free and dairy free and moved on with my life.  I had no knowledge of healing the gut, cross contaminations or any of the things that I know about now.  Oh, the things I wish I could go back and teach myself 🙂

In 2014, I was newly married and was deathly ill. I ended up in the hospital because of multiple mystery symptoms including extreme fatigue, inability to stand for longer than it took to get to the bathroom, dramatic loss of strength and an episode that involved passing out and my lungs closing off.  Eating made me want to gag even though I was hungry,  I sometimes had blurry vision, lights and sounds seemed jarring, I was dehydrated despite drinking tons of water, constantly thirsty, had trouble controlling my temperatures (often feeling hot and cold at the same time and sweating or freezing without reasonable explanation) and I was scared out of my mind. I lacked the energy to bathe and feed myself on a daily basis.  I had always been healthy and had no idea why I was so sick.  Neither did an entire team of doctors.  A week later I had lost 8 pounds and couldn’t get to the bathroom without holding someone’s hand, had to shower in a chair, and could barely hold up my head to wash my hair.   I was told there was nothing wrong with me and treated like I was crazy.  I was crazy… crazy upset that no one would help me; that no one would listen to me or test me for anything outside ordering an EKG or a stress test. I was crazy upset because when I would have episodes where my limbs would draw up and my extremities started to tingle and my muscles would contract in on themselves and then I would lose consciousness, nobody cared or even answered the emergency button that I pressed. Nobody cared about what I was experiencing.  They just wanted to look at my mitro-valve prolapse. I had doctors ordering tests that never even visited my room or talked to me about what I was experiencing.  They were uninterested in my symptoms.  I was told that because I was gluten free, the antibodies wouldn’t show up and denied an MRI because MS “didn’t act like this”.  (The MS doctor disagreed later, see below).

The next week, I could barely walk or stand for more than a minute, but I could sit.  That meant I could drive.  I immediately drove to my doctor that I had been seeing since 2008, four hours away in little Jackson, Mississippi.  She had gained my trust In 2008 when she diagnosed me and cured me of the severe adrenal fatigue that I had been dealing with for 20 years.  Needless to say, I knew she would listen and find it.  She found it on the first blood draw. She confirmed one of my suspicions that I had gluten ataxia.  The tests showed tons of gluten antibodies in my system even though I had been “gluten free” for 6 years! (That is “not supposed to be possible”.. the story of my life) It also showed I was reacting to several other foods.  Although the previous team of doctors had denied me a test for MS, she agreed to get me in to see an MS specialist for testing. I just wanted to rule it out.  I didn’t want to be the statistic of someone who waited 8 years for a diagnosed.  By the time I got to that doctor, I couldn’t control my urine flow, was experiencing the “MS hug” (or was it my first bout of asthma? or my POTS? or muscle spasms around my lungs?) and had lost partial vision in one eye. My pupils didn’t react properly to light and I had wet myself one day in my kitchen.  That doctor tested me twice for MS. I didn’t have it.  Although I understand why she needed to test twice to make sure, I was lucky.  Gluten ataxia overlaps with MS 10% of the time and can turn into MS.  I was one of the lucky ones. I got diagnosed before that happened.

At this point, this becomes less my story and more about gluten ataxia. Gluten ataxia is a rare gluten related disorder that some doctors don’t believe exists. I will not go on about how ridiculous that is, as it is measurable and detectable- although the rest of the internet says it is not?

If you look this up, it says that there are no blood tests to diagnose GA, but that is outdated information.  Cyrex labs has a test to not only tell if you are reacting, but what the gluten antibodies are attacking and how much damage is done. When I got my diagnosis, a result of a simple blood draw, it was able to tell me that my gluten antibodies were very high, and were attacking my intestines (I had no noticeable digestive symptoms), my skin (the blood was taken weeks before my first dermatitis herpataformis outbreak the “celiac rash”) and my brain.  She was also able to tell me that my blood brain barrier was basically dissolved.  this explained why symptoms that used to take 3 days to show up now showed up in minutes.  But they stayed in my body for days and sometimes weeks.

Another myth is that you cannot reverse the damage. You may not end up a balance guru (dancer’s pose will never be the same for me.. or will it? …Challenge accepted. ) but for me, I was told it was reversible. My doctor recommended MCT Keto.  This particular diet was originally created to manage seizure disorders, but unlike traditional keto, allows for up to 20% of the diet to consist of carbs, providing that at least 50% is from Medium Chain Fatty Acids (MCT fat) such as coconut fat.  A simplified version ofI used Coconut Fat (MCT) to help heal my brain damage this is the Wahl’s Protocol Level 3, which allows for up to 6 cups of non-starchy vegetables.  I was already on Level 2, which I had discovered through my own research and had already utilized this to help me with energy and mood.  Dr. Wahl’s uses her MCT keto based protocol in her traumatic brain clinic, for various brain disorders and damage and I knew my doctor was right that this was my best chance to reverse the damage. I had already experienced what Level 2 could do, I wanted more.  Although I was scared to give up things I loved like bananas and other fruits, I moved forward.

Through that diet and the support groups I found online, I discovered AIP. Many in my support group were doing both.  I decided to remove the nuts, seeds, eggs, and nightshades. I had already lost mushrooms, fermented foods, and yeast heavy foods like onions as a result of cross contamination and was experiencing some inflammation from potatoes in addition to the 15 foods listed on my gluten  cross contamination tests.  This seemed like a good idea to remove all possible reactions until I healed. I couldn’t lose another food. I’m still discovering foods that were lost before my gut was fully healed.

After struggling with my weight my whole life, I now had the opposite problem: keeping it on.  I spent the next few years addressing one thing after another, my brain, my breathing, my mood, my balance, my ability to walk, exercise, work, absorb nutrients, grow hair and nails- one by one I worked to get them back.  I was told my POTS was “incurable” , so I proved them wrong and  I cured my POTs through diet and addressing root causes. (Read that story here). I reduced my heart rate with diet and lifestyle to the lowest it had been in my adult life. I got my hair to grow back and to stop turning white. I got my strength back and started working out again on a limited basis.

2 years post diagnosis,  I was able to work part time in a modified capacity. I then got diagnosed with Hashimotos, and was told I didn’t have RA or Sjogen’s but was on my way (I had the antibodies and the symtpoms such as joint nodules and dry eyes, etc.).  I was also diagnosed with Chronic Active Epstein Barr (CAEBV).  A zyto scan found about 10 to 20 other things (I have yet to be tested for those officially).  Yet with all of those, I felt better than I had in years.  But I also knew I could feel even better.  So I worked the last year to figure those out, tweaking my diet to focus on foods to support energy, the adrenals,  thyroid, the immune system, digestion and blood pressure. If someone said to eat parsley, I tried it.  After finding some answers, having some ups and downs with CAEBV (we call those lessons- read about how I beat that here), I’ve gotten my life back.  I now am pursuing my dreams, taking care of my house, exercising regularly, and am back to my “old self” (this means I wear makeup sometimes and dress cute on occasion and bathe regularly! ). I am able to pursue my dreams and have a full life. I am once again self -disciplined and self-motivated, traits that were stolen by my illnesses. It took years of hard work, ups and downs and learning lessons along the way… but I did it. I have taken my body back and it will only get better from here.  I will always have to work to maintain it (lets face it, my immune system either sucks or I was just dealt a “crap hand” of genetics and virus exposures).. but I have no doubt that I am here for a reason.

Three years later, I still struggle with balance; memory and learning is no longer as sharp as it used to be;  I have to guard against constant exposures that damage my brain and nervous system.  I have to deal with  others, including family and friends, thinking I’m being dramatic (they don’t get it.. how could they?), and continue to work on my strength and inflammation. I am not as strong as I used to be, I cannot learn as much facts and hold statistics like I used to hold in my brain so easily, and can no longer do “dancer’s pose” with ease or lift 50 pounds.  I’m in constant danger of environmental mold, a neighbor’s marijuana, and can’t walk into a bakery or pizza place where there may be a lot of flour in the air.  I can’t drink out of a paper cup (the glue has gluten) and can’t have thanksgiving with my extended family.. but I have no doubt that every food allergy I experience is by divine design.  I have a faith that every food I cannot have is a way to ensure that I reach my purpose in life, that I am healthy and present and able to help others.  (I’ll explain that one later:)

Every case is different, I am sure.  My case was complicated by my own body’s differences..  My damage extended past the cerebellum of my brain (the part responsible for motor skills) and  into the deep limbic system, which also includes the autonomic system, the HPA axis, and controls your outlook on life (1)  . This resulted in several neurological symptoms such as depression, flares that activated anxiety and problems with the HPA axis (all three parts were effected, suspectedly), memory and learning, attention, and autonomic functions such as breathing, heart rate, and blood pressure. A food exposure caused enough stress to my adrenals and nervous system to cause POTs, and have included asthma and seizure like episodes that classify as an anaphylactic response to gluten. I experienced neuro-muscular spasms, blurred vision, at times have forgotten words mid-sentence, optical neuropathy, nerve damage in my legs and nerve pain in my extremities. The gluten exposures have affected every part of my central and peripheral nervous systems, my brain, my immune system, my digestion, my hormones and possibly more.

To make things more exciting: I don’t carry the DQ2 or the DQ8 genes for celiac.   I carry the DQ1 gene, which is not considered the “celiac gene”, but comprises for 20% of gluten ataxia cases.  My Dermatitis Herpataformis, my gut destruction and even my neurological symptoms have defied the “rules” of genetics.  Yet I am still diagnosed with celiac, DH and GA.  “Science” doesn’t know everything. I believe that in the future, that DQ1 and DQ7 and DQ9 will also be added to that list of “celiac genes”.  I am living proof that the truth is being denied. The related disorders are all over my family tree. These “coincidences” are being statistic probability.

In the last 3 years, I had to be on a stricter than strict diet, where “gluten free” is not gluten free enough.  Where 5 ppm is still enough to make me sick for 3 days, making me unable to drive, stand or get out of bed.  1 ppm, like from a paper cup or someone’s hand touching my food, is enough to make me unable to breathe comfortably for days or weeks.  Eating at restaurants is not fun or worth it (there are a few exceptions, but expensive ones!). I no longer can eat with others and will never again enjoy a meal with extended family or friends. Traveling is a challenge (BYOF!- bring your own food!) and I constantly have to defend myself to those that “don’t get it”, including doctors, family and friends.

Chronic Illness can let you know who is really behind you in life!

My husband on our wedding day, one year before I was too sick to be a wife.

However, it has also been a blessing.  I have no choice but to be healthy. I am allergic to all unhealthy food!  I cannot become an alcoholic or a drug addict (alcoholism runs in my family) and I am encouraged to pursue a life that balances health, stress, and career. (The alternative is a decline in my health).   I have been cosmically “pushed” to create a support system and a community of those that support my choices for my health, that encourage me and respect me, to distance myself from those that bring negativity and discouragement.  I have discovered how truly awesome and amazing my husband is as a person.  I have discovered exactly why he was chosen for me in this life. He is literally my gift from God.  Through this struggle, I have found a path to a balanced, fulfilling, and purpose driven life. I am thankful. And I am truly blessed.

I am often asked if I miss foods like grilled cheese, and I joke in response, saying: “my last meal will be pizza, grilled cheese, bagels and cream cheese, seafood Alfred0, mac and cheese… but what a way to go!” but truthfully, I’m so thankful.  As a result of this challenging journey, my life is going to be so much better than any pizza. I can truly say that nothing tastes as good as healthy feels. And I truly know that to be true.

Thank you for reading this very personal story.  If you are struggling and would like help to Take Your Body Back from Chronic Illness, Autoimmune, a related disorder such as depression, adrenal fatigue, POTs, anxiety, inflammation or just want to improve your health, please sign up for my newsletter at the top of the page.  If you are interested in a” one on one” health coaching package and would like a free consultation, contact me directly and we will set one up at a time that is convenient for you. I am here to help.

Feel free to comment below or email me via my contact page: I love hearing from my readers!

  1. Change Your Brain, Change Your Life by Dr. Daniel Amen

For a full list of resources I used in my journey, please visit my Additional Resources page.