Big Bill

On October 21,2024 my life changed forever because my diagnosis of Ataxia. The neurologist said I had two options to go to Rochester Mayo or The U of M. I chose the University since my wife had to do the driving and it was closer also. So I scheduled at the University but, I couldn’t be seen until February 2025, so I had time to do a lot of research.

Back in October, when I was first diagnosed the neurologist put down probably genetic before I found out what type. So when I researched genetic Ataxia I found out a wealth of information. I found out that there was no cure and there was a severe progression to this disease. I thought I had to modify my house and I thought I would not make it until February.

I decided to go to a non-traditional doctor down in Red Wing. He did two things when I first went in to his clinic. He told me to go on a gluten-free diet then I had a Wheat Zoomer test. This test told me a lot. 4 things: 1) I don’t have Celiac Disease. 2) I could get Celiac Disease. 3) I should be on a gluten-free diet. 4) My wheat readings were off the charts – double the maximum level that was high on the test!

The University could move the appointment up a week. I met with two neurologists . The first doctor thought it was SCA2. He thought is was it because it is the most common ataxia. It wasn’t SCA2 or Friedreich’s Ataxia. The other doctor thought it was either SCA7 or SCA34. He thought this when he saw my MRI. I saw the usual Ataxia signs (the shrinkage of the cerebellum). So I decided to do more research and found out I had a few or none of the symptoms of any of the Ataxia’s they tested! 

I decided I have the symptoms of Gluten Ataxia. Symptoms are 1) Ataxia symptoms of motor skill problems. 2) Neuropathy. 3) Restless legs syndrome. 4) After six weeks of being on a gluten-free diet your symptoms get better. 5) When you accidentally have gluten or have hidden gluten (gluten in a product and it is not listed on the label on the product) you get worse symptoms for 3 days or for a week. 

In December, before the Gluten-Free diet kicked in, I thought I was going to cry and not make it to 2025. Now, since being on the diet I can do 1 hour of cardio a day, seven days a week. I incline bike for 45 minutes and I do 15 minutes on a treadmill! Gluten is glue on your brain. It attacks your brain and does a lot or damage that once it’s gone it’s gone. I think it the most aggressive of all Ataxia’s because I was going to die in December because I was going to downhill very quickly. I found that Gluten Ataxia is an acquired Ataxia which means if you remove all gluten from your diet there is a cure and the disease won’t progress anymore!