My Story

[andrew1273278]

Hi all,

 

I figured I needed to start here so I could comfortably share my issues in a place of understanding and similar feeling people. My doctor and my family are understanding but I believe they still have a lot to learn about gluten intolerance. I believe I have gluten ataxia, which is a gluten intolerance with neurological issues. My doctor agrees that I have a gluten intolerance, but doesn't link my social anxiety - that never goes away - to this. Let me start at the beginning. 

 

I'm normal. I love carbs, but especially love pizza, brownies, cookies and anything to do with wheat. I've always been overweight in the waist/stomach area. This was normal when I was growing up. What my family and friends didn't understand was my extreme lethargy after eating almost anything. I mean, in America, we are saturated in wheat. Everything is wheat. I can/could barely ever catch a break from being sleepy. But when I would eat those foods that are JUST wheat, like pasta, that's it. I am passed the hell out. 

 

And looking back at the past year, I've had to overcome such a struggle that wasn't even about being ridiculously sleepy all the time. I had lactose intolerance, I've developed intestinal issues which is another ungodly issue to have to deal with, especially while being at work, where bathroom time is limited. I get a very flushed, hot face after eating anything with a sprinkle of wheat. And though I typically resorted to caffeine, I remember a particular day last year at work when it was very busy. I was tired and BAM - anxiety hit. And I had absolutely no clue what was going on. I was on a register and I was cashing out a customer and had to have a supervisor come in and save me. I ended up crying into the arms of a coworker who helped me contact my parents for a ride, all while I was extremely confused and dizzy as hell. 

 

This would have been over quickly if I knew what was going on, but for months and months and months I dealt with it as if it were an ear infection, sinus, and then a cold. I had no clue what I was dealing with and neither did my primary doctor. I would go through weeks of confusion, easily getting paranoid, angry, confused, fearful, lethargic. Finally, I made sense of it about 6 months later online while searching out my symptoms. I was dealing with anxiety. So, for months and months after that I tried new medicines which helped a bit, but it took me about 6 more months to discover gluten sensitivity through work while talking to customers. 

 

I work at Whole Foods and it is common for people to get anxious and confused, tired and hot when they have gluten issues. After going gluten free, I think my anxiety has gotten a lot better, and I can even say that my other unrelated issues like psoriasis are clearing up, too. But sometimes I cheat on my diet and here's what happens: I feel like someone knocked me out. My face swells and I have troubles breathing. And then I can sleep for hours, no matter the time of day. 

 

So, I am actually putting this out there for my friends, family and others to see all in one shot what I was going through. There are times where I was mean, tired, confused, unfriendly, paranoid, sick, etc. This is why and I finally have figured it out. And all is clear, and I hope that others with this issue can figure it out and treat themselves to a healthy alternative diet. 

[bartfull]

Welcome, Andrew!

 

So I take it you never got tested for celiac? Your symptoms could be from celiac or from non-celiac gluten intolerance, and based on the fact that you feel better gluten-free, it sure sounds like one or the other.

 

The difference is though, that if you have celiac, not only do you feel lousy when you "cheat" on the diet, but you are doing realdamage to your body. If that is the case you need to be REALLY strict. Read the Newbie 101 thread in the coping section to help you get started. Then come back and ask as many questions as come to mind. We're glad to help.

[nvsmom]

Welcome!  

 

That's impressive that you figured out your gluten intolerance and have started to take action already. I hope your days of cheating are behind you though, because regardless of whether it's celiac disease or NCGI, you're hurting yourself when you eat that stuff... but you know that already, right? 

 

I wish you good health and success with switching to a gluten-free life.

[GFinDC]

Hi Andrew,

 

Welcome to the forum!

 

It sounds like you are on the right track going gluten-free.  If you want to know about celiac disease you can find plenty of information reading this forum.

 

If you want to know for sure if you have celiac disease you would need to get blood drawn for antibodie tests.  But that doesn't work unless you are eating gluten for 6 to 6 weeks before the blood draw.  Some doctors suggest 3 months to be sure.

 

There is a genetic component celiac disease.  You can be tested for those genes at any time.

[eers03]

Welcome to the forum.  If you are reacting to rare gluten consumption as you stated, you need to never consume it again.  Ever.  There is research out there that makes gluten to a celiac look like poison to a normal person.  Congrats on your determination and open-mindedness to listen/learn/apply what you figured out.  Right on!