Drowning in the Celiac Abyss - Gluten Free Gal

Drowning in the Celiac Abyss - Gluten Free Gal

By Kirsten Berman, GlutenFreeGal

After years of feeling miserable, I was finally diagnosed in November 2010 with Celiac Disease, and my life changed forever.

Celiac Disease is an auto immune disease (not an allergy) that can attack any part of the body or brain when gluten ((wheat, rye, barley) is ingested, even in minuscule amounts.  The immune system gets confused by the gluten invaders and instead of attacking the gluten, the immune system attacks the body.

I ate pizza, drank beer, indulged in many a wheat item for most of my life and felt just fine, or at least I thought I did, until one day I didn’t.  That day turned into weeks and eventually into years, 7 years to be exact.

My symptoms would come and go as they pleased and no one could tell me why.  Well, they did tell me why, but they were all wrong. I felt like I had lost all control of my body as the disease manifested anytime, anywhere.  The longer I went undiagnosed, the sicker I became. My hair started to thin, I had horrible bouts with vertigo that left me in bed for days sometimes; hand tremors, brain fog, cold sores, restless leg syndrome… and one doctor had the nerve to tell me it was all in my head, “brought on by the depressive state I was in”.  Depressive doesn’t cover it doc! That’s when he suggested Prozac. No thanks.

Yes, I was depressed, very depressed and had some very dark thoughts concerning my time left on this earth.  But, somehow I got through it and woke up every day hoping for the best.  Then finally that best day came and within a week of eating strictly gluten free, I was a new person.  No more vertigo, migraines, nausea; my mental instability started to balance out and I no longer felt completely bi-polar. 

It was quite remarkable that all this torture happening inside my body was caused by something I was eating and as soon as I removed it, the symptoms went away. Up to the point of diagnosis I had never heard of gluten free food or celiac disease and really had no idea where to turn, except Google, which was very helpful. 

Throughout 2011 I read everything I could on gluten free and celiac disease, I even taught myself how to bake gluten free; even though I wasn’t a very good baker before, most things came out better than expected. Or so said my guests and neighbors that I used as guinea pigs.

The downside of 2011, the first year of gluten freedom, I made a lot of mistakes and did not take as many eating precautions as I should have or knew I needed to take. I did not always read labels, I assumed items were gluten free because in my mind there was no reason to add wheat to it, I didn’t ask the right questions and yes, I got sick. 

This time though, when a glutening did occur, it hit me ten times harder than before I was diagnosed.  Which makes sense, the gluten invaders were now working on a clean slate, devoid of gluten, so all it took was just a few crumbs to set off an ambush of symptoms.  I slept 2 whole days after a 4 hour sushi party using regular soy sauce.  This is one of the products I assumed was gluten free because it was soy – sauce, which would be a painful mistake I would never make again.  I also made the same mistake with twizzlers and mentos. 

Going gluten free wasn’t as easy as deciding to do it, especially when it is not a choice but a necessity. The villi in my intestines had been compromised and malabsorption of integral vitamins and minerals had occurred.  Just because you switch up to a gluten-free diet, it does not mean that all of a sudden you are cured, I think this is a huge mistake easily made

Healing the gut and living a gluten-free lifestyle takes research, constant awareness, and most of all, patience. There is ‘hidden wheat’ in more products than we realize and the battle can feel like an uphill one; reading every label, asking wait staff a million questions, eating out at social occasions, and sometimes just feeling safe in your own shared kitchen.  

It’s been a long hard road dealing with pre-diagnosed celiac disease, yet today I am healthy, happy and living a healthy gluten free lifestyle. No matter what people say about gluten free, for those who need to be, it is not a fad, I’d bet my life on it.

Here is a piece of advice:

  • Don’t ever be embarrassed to ask questions about the food you are putting in your body, and don’t ever assume that the person handling or cooking your food knows more about your disease than you do. 
  • ALWAYS ALWAYS READ LABELS! If you can’t read labels then ask questions. If you don’t get the answer that you are looking for, then do not eat it.  I have made many food mistakes along my Celiac/Gluten Free journey; hopefully I can help you not make the same ones.