Gluten is my nemesis. I feel like every time I eat, the world is a minefield and I am rolling the dice. I never know if I am going to lose a week of my life or feel good after I eat. People often ask me what happens when I get “glutened” and why does it happen so often, so here it is.
I have not willingly eaten gluten since my Celiac Disease diagnosis in Dec 2012. I believe I have been sensitive to gluten my whole life, but Lyme Disease triggered an immune response of Celiac Disease when I was very sick. Fortunately, since getting stem cells at Infusio, my Celiac antibodies have completely disappeared, though I remain very sensitive to gluten.
Now that I feel good and have recovered from Lyme, I have a social life again. This often includes going out to dinner, going to parties or friends homes and events, where eating can be very precarious. I tend to eat 95% of my meals at home or make my own food to take with me, yet I still somehow seem to spend about 30% of my life glutened no matter how strict I am!
So how does this keep happening?? Well, there are a few reasons that you can check out in my blog post Gluten Free In A Gluten Filled World.
What Happens When I Get Glutened?
Getting glutened from cross contamination can lead to a very debilitating experience. For me, the symptoms last exactly 1 week. So if I get glutened Monday at lunch, I won’t feel better until the next Monday at lunch. If I get glutened again during that week, it restarts the 7-day window. There was one time I was triple glutened! Talk about feeling like death!
For me, I fortunately, do not get any digestive issues, but I do get all neurological symptoms which can be very debilitating.
My brain gets greatly affected by gluten. I get awful brain fog and memory issues for the week. I also get very anxious, depressed, irritable and incredibly emotional for no real reason. My light and sound sensitivity come back with a vengeance for the week too, adding to my irritability and feeling of overwhelm.
As if that was not bad enough, I also get 7 days of Occipital Neuralgia causing an awful throbbing headache in the left occipital area of my head that lasts 7 days. The only thing that has ever caused this headache in 5 years has been gluten so it is always how I am able to confirm that how I am feeling is a gluten reaction.
My body is also greatly affected. I get super fatigued and achey and can see a significant difference in my strength if I still attempt to work out while glutened.
As if the daytime fatigue was not enough, I also get wicked insomnia at night which makes it very hard to finally fall asleep and rest. I have not dealt with insomnia since getting stem cells, but when it comes back when I am glutened it's pretty intense.
In general I also just feel very unmotivated and lethargic. I just want to lay in bed all day and pass the week as quickly as possible. I guess you can say I fortunately learned some coping mechanisms to keep going with life after years with Lyme that I still do my best to get things done during the week, but everything is a struggle. The thing that keeps me going is I know this is temporary. I know in 7 days it will go away and I will feel great again, but it's still hard in the moment.
Basically, getting glutened feels like being hungover with the flu all at once, for a week. I do feel like it has become more tolerable as I heal, but it also is a significant difference in how I feel for a week. Sometimes it's worse than other times and I am not sure why. Maybe the source of gluten? Maybe the amount of gluten? I am really not sure.
Every time I eat out I do take some enzymes as a preventative measure. I do find that if I get glutened without enzymes it is 50% more intense, so they do help, but they don’t make it go away completely. The enzymes I find most helpful are Integrative Therapeutics - Betaine HCl and Glutenza.
I have also tried everything post gluten and nothing seems to make it better or go away faster. Acupuncture helps for about 24-48 hours but then it comes back until the 1 week mark. The best I can do is take it easy and rest as much as possible and try to not push myself. This may mean working out less or saying no to things so my body an recover.
All I can do is hope that I continue to heal and react less and less to it or that someone comes up with some sort of cure or pill that can help prevent a gluten reaction. Until then I continue to be as cautious as possible.