Gluten Ataxia will spin your world upside down. I had connected the dots that gluten caused my motor skills to deteriorate. I just never dreamed that gluten could be the cause of all my symptoms. Little did I know how big of a monster the littlest crumb of gluten could be to me.

Gluten Ataxia is a very serious, rare, autoimmune disease. When gluten is consumed your cerebellum is attacked by your own body. Muscles and motor skills can be affected as well as speech and a whole host of other symptoms. I found myself so sick with Ataxia that I felt like all I was capable of doing was breathing, and that simple act took all my energy. 27 months later I finally feel semi normal. There is not much awareness of Gluten Ataxia and we are a small group. I hope this post helps those who experience Gluten Ataxia.

People with Gluten Ataxia can benefit from removing trace gluten from their diet. I have spent a great deal of time researching gluten containing products. As I researched, I basically thought I was doomed to be glutened.

Gluten is everywhere! It is absolutely crazy everything it is in. I started by looking at the prepackaged gluten free products I was consuming. After a bunch of research I learned that many certified gluten free products can still contain up to 20ppm of gluten. I felt like I had been lied to and that I had been poisoning myself. Trace gluten is not a problem for most people, but for someone with Gluten Ataxia it’s a big deal. The smallest amount of Gluten sends a reaction through my body. In my mind gluten free should mean just that, absolutely no gluten. I soon found out that the phrase “absolutely no gluten” hardly exists.

Gluten is a monster. It lurks everywhere. I have some tips to make life a little easier. First of all, I was overwhelmed as I started researching trace gluten. I was forced into a lifestyle change, but that didn’t mean it was an easy transition. I had to make changes little by little. I was not trying out a fad diet. I was embarking on a new way of eating. As I researched I made a list of everything I needed to tackle. This helped because I could visually see my progress as I crossed off the list. This was a great way of encouraging myself.

It is pertinent to say that I am not a doctor or a nutritionist. This is simply my journey of how I tackled Gluten Ataxia. So take this all with a grain of salt as you explore what’s best for you.

I had been making the journey to a healthier lifestyle for a while. I thought I was eating gluten free (we will get to that in a minute), I had cut out all beverages but water, I had mostly elongated prepackaged foods, no processed meats, and do to lactose intolerance I had removed dairy.

First up was grains. Removing all grains from my diet. This was a big one. I have always enjoyed fruits and vegetables AND grains. Removing the grains takes some adjustment. My body loves grains. They help me to feel full. As I researched, I learned that grains can easily become cross contaminated as early as when they are harvested. Farmers may use the same equipment to harvest wheat as well as another grain. The same trucks may be used to transport the grain and the grain may be stored in the same storage areas. Now this may not bother most people. Celiacs can normally handle up to 20ppm of gluten in their food and not have any reactions. Oh how I wish that was me. My body is extremely sensitive to trace gluten. Even to the point of being ridiculous.

Removing grains helped me. There are times I feel like I just need some grains. From the research I have done cheating can hold big consequences. When your brain is at risk, safer is always best.

Next up was carefully selecting my vegetables. I have been glutened from organic frozen peas. Can you believe it! I learned the hard way that organic doesn’t mean it’s free from gluten. Vegetables are gluten free essentially. The problem comes in due to crop rotation, harvesting, transportation, and processing. Before the vegetables make it to the store they could have had some encounters with gluten. Again this isn’t a problem for the majority of people. I have yet to have a problem with fresh vegetables. It’s when I select canned or frozen that I must be careful. Canned or frozen vegetables are my go to when I am just not feeling well. Maybe I am tired or running behind. I have to be very careful to read the packages. Remember those peas that I was glutened from? Turns out they were processed in a facility on the same equipment as wheat. I just so happened to get enough in my system by consuming them to cause drama with my body. I am very careful but sometimes I still get a small amount of gluten in my system even with my best efforts.

The next food I concentrated on was any variety of meat I consumed. After research I settled on purchasing organic meat from select companies. I researched the companies to ensure what was important to me was important to them. I also do not buy meat from the display cabinet that is unwrapped. I have been glutened from a filet mignon from a display case. Many times there are already breaded items in these display cases. There are also fans to circulate the cold air in these cases. There is a big possibility that gluten particles from the breaded items are on all the items in the case due to these factors. It took twice of me being glutened and some research to figure this out. I am not a very big meat eater. I do try to include it in small amounts each week.

Nuts! Yes, they can be contained too. Many of the popular brands are not gluten free but there are gluten free choices. I like nuts.com. They have two different levels of gluten free standards. Research is key to all of the food a person with Gluten Ataxia consumes. It is time consuming to research where all your food comes from and how it is processed, but it could mean the difference of years of recovery verses staying as healthy as you already are.

Up next is condiments. By this point in my research I was overwhelmed. I felt like Gluten was lurking around every corner. I found that many condiments contain gluten. Even the ones certified gluten free could contain up to 20ppm. Everyone is different but I settled on removing all condiments from my diet. All are processed and therefore I could not really be sure they were safe. Even vinegars are questionable. Some use a gluten product in the vinegar making process. There is debate on wether or not the gluten is even in the final product. I air on the side of caution and select vinegars that are made without any gluten from the beginning. I do use gluten free spices when cooking.

In addition to everything mentioned above, I have made some big changes at home. My family is not gluten free. So I found the need for gluten free zones. I have my own pantry and fortunately have a second refrigerator in my garage. So it is really simple to separate my food without the risk of cross contamination. I have all my own dishes as well as cookware and bakeware. I have separate storage containers as well. I no longer wash my dishes in the dishwasher with my families dishes. I wash them all by hand with a new dish cloth each time. I air dry them in a separate gluten free area as well. Sponges and scrubbers are easily contaminated with gluten from non gluten dishes so I don’t ever use them just as an added precaution.

Having someone who is very sensitive to gluten can be hard for other members of your family that are not gluten free. It’s easy for them to forget to clean up theirs crumbs or to not contaminate the butter or jelly. They may not understand why you need a different toaster, especially if your children are young. I have found the simplest way to prevent cross contamination is to separate areas into gluten zones and gluten free zones. Doing this helps everyone know what they can use and what they should not use. It keeps Gluten sensitive family members safe without stressing out your family.

This has been a quick overview of some of the steps I have taken to make my life easier living with Gluten Ataxia. I hope this post helps you on your journey of healing as well.