Hi Everyone! I'm so happy to have found a group of people that understand what GA is like to go through. I'll give a bit of my background:

I'm 26 and live in Edmonton, Canada. About 15 months ago, I collapsed at work after my muscles stopped supporting me. For the next 8 months, in addition to no functional use of my legs, every week I would get full body muscle spasms that would last for 12-15 hrs.

Initially, when I went to the hospital, they put me in the psych ward for 3 weeks and determined that there was 'nothing physically wrong with me' which countered the psych assessment of 'nothing mentally wrong with me'. The next several months were spent getting bounced from doctor to psychiatrist and back and forth with no one offering an explanation to my symptoms.

Finally, a naturopath/traditional medicine clinic in Phoenix determined that I was gluten (and corn and dairy) ataxic. The effects from the diet change were immediate. Three days later I was able to walk with a reasonable gait.

It took 2 months of intensive physiotherapy to retrain my body to move normally again, but I got there. I'm happy to announce that I've been back to work for about 3-4 months now. However, there are an incredible amount of challenges to being around people who don't share the same dietary restrictions. The office is always full of baking and doughnuts, etc. Though I obviously don't eat any myself, the contaminents get spread throughout the office on the hands of people that do.

I've found that even trace exposure to my allergens will send me back to immobility for between 5-10 days depending on if the trigger was gluten or not. I've been getting these reactions every 5-6 weeks since i've been back to work. I think the constant trace exposure slowly builds up in my system until I tip over into a reaction. That would be my only explanation for the consistent frequency of my reactions. I can also 'tolerate' small quantities of corn syrup in a glass of sweetened soy milk in weeks 1-4, but I will react to that same glass in weeks 5-6.

Before I went back to work and after I had changed my diet, a 4 month period, I only had 1 reaction to an old jar of peanut butter that still had crumbs in it. So I'm struggling to find ways to protect myself. It seems like it takes a little longer each time to fully recover from an episode.

So, I'm wondering, has anyone had success in the workplace (or any other place where you are consistently surrounded by others) with GA? I don't want to keep damaging my body like this, and could use any tips/tricks people have found.

Yikes, this post wasn't nearly as brief as I intended. Hopefully everyone didn't fall asleep halfway through.

Thanks for starting this board up Brett!

Teresa

Hi Teresa,
I think you'll find here that folks with GA often have more (may I call them...) "mini attacks" with the ataxia if they eat certain other foods. May be different for each person, but I was often having issues with the ataxia more than I am now before I went on the Specific Carbohydrate Diet. Things like potatoes, starches, grains, sugar, all that stuff would add up to decreased coordination and blurry/doubled vision etc. Now I know most of my trigger foods and I eat strict SCD, and the "mini attacks" (I call them "mini" because for some these other trigger foods still don't set us off nearly as bad as gluten...Gluten is absolutely DEVASTATING to my entire body including my coordination) have greatly decreased in frequency.

I still don't have my balance back. It improved slightly more than a year ago, but I don't think I'm going to get it back. I use my eyes to balance so I can't walk (with cane or anything less than my big rollator for very short distances on well-known ground) in the dark. Oh well. Just glad I can now walk at all!!!

Other things can trigger attacks besides food, at least for me. This includes not getting enough calories each day, not sleeping well, pushing my body too hard, things of that nature. Gluten STRESSES THE BODY. And I think in general, our bodies are just kinda...uhm....weak? We respond strongly to lots of kinds of stressors, not just gluten. I bet you could write down a list right now of 4-5 other things that make your body go nuts! Perhaps just make note of these things and write them down during the next few weeks and try to see what other (non-gluten) stressors may be contributing.

But by all means, cross-contamination can be a HUGE issue and best to avoid at all cost. I'm so careful about CC, hyper-aware when I'm outside of my home, and I bring GF hand wipes with me EVERYWHERE and wipe down chairs, tables, etc. I don't care what others think - I need to protect MYSELF. Thought about working at a shared computer keyboard. Could buy your own keyboard and tell office staff not to touch it. Establish habits of being super-careful not to touch hands to face. Great idea with the plate over the bowl, by the way - I like it. I also cover my bowls in rogue microwaves; I do nuke my food in plastic, however, and just keep the top loose.

I now work from home due to my disability and this arrangement works out so well for me! I love it! I'm not physically or mentally at the place where I'm ready to work outside my home, in part because of CC issues and how devastating gluten is to my system. But maybe someday..... it is a dream of mine to work outside of my home again....someday.

GutsyGirl