Is “gluten ataxia” a real thing?

This is a question my clients ask quite often. And and the answer is…”let me tell you a story. But, before I can tell you THAT story, I need to tell you THIS story..” I am kidding. While Dav Pilkey says exactly that in his “Captain Underpants” comic novels (which our whole family reads and laughs hysterically with:-)), I do not say this to my clients. But I will say it on this blog post. Because there is a point to it, so hang in with me…

The first story begins almost 6 years ago…Enter 2010.  It is me, just 6 years younger. But I look quite a bit older than I do now.. Because I…just…don’t feel good.  I keep “blaming” feeling lousy on various things simply because I really do not understand what is going on. I am overweight, pre-diabetic and very prone to panic attacks. Which is not good because my children are 6 and nearly 3 then.

This is the first time in my life I get diagnosed with an oddly painful and high fever inducing ear infection. For which I have to go on two rounds of antibiotics. In addition, I also have this weird looking,  vividly cracking, skin around my eyes which I “blame” on eye moisturizers/ creams. So I keep changing those. To no avail. The skin around my eyes does not look good, no matter what I do.

I suddenly realize that the rash on my hands is getting really uncomfortable also (it itches and, if I scratch it without thinking about it, the skin starts bleeding easily). I am realizing the best way to keep the skin on my hands from getting infected is to apply heavy duty moisturizers and wear cotton gloves during the day…. In the middle of the summer. Which I am spending with my kids at the Oregon coast.

And one day we go to our favorite bakery for lunch only to discover that, in this tourism-driven small coastal town, the bakery is closed Monday through Wednesday. And it is Monday. So we have to have Plan B for lunch. No bread as we never ate “supermarket/ store bread” anyway, only sticking to hand made locally made breads. We were being “healthy” like that, you know…

By Thursday, something very strange is happening. The skin around my eyes has healed completely and looks perfectly healthy. I am realizing that the skin on my hands is nearly all healed up too. No longer itchy and no longer bleeding. “What is going on in here?” I ponder, as we are about to order our lunches at the bakery. And, suddenly, a light bulb goes off in my brain. What if… 

I decide to go wheat-free through the end of that week. I am figuring I can get back to eating some wheat on Sunday: it will be my son’s birthday and we are ordering delicious custom made cupcakes from our beloved local bakery to celebrate.

By that Sunday, I feel amazing. My brain is so sharp and clear, it is almost surreal. No panic attacks, I just feel calm and happy. Yet, instead of realizing what might be happening, I reach out for one of those cupcakes (I mean, WHAT, am I going to “miss out” on my kid’s 3d birthday???).  The cupcake tastes delicious. I feel great! For the first 30 minutes. And, then, all of a sudden, I feel like my whole world is rapidly crashing down. I feel down. I mean, really down. Downright depressed. And I am having an awful migraine. And a panic attack. By the end of the day, the skin on my hands is back to itching and “oozing.” Not fun.

So, that was the fist story.

And the 2nd story is actually beginning now. Fast forward to 2016, shall we?

Let’s recap what had transpired for those past six years. After realizing gluten was making me sick, I got off it completely. For a few years, I never looked back. Because once you feel awesome, why would you, right? Right??? Well, maybe… 

Let’s see what “awesome” meant for me.  Nearly 40 lbs gone (I did not just “quit” gluten, I went Primal and so out went all grains), weird mood swings and panic attacks gone. No more migraines or PMS symptoms. Skin looking flawless and radiant. My dentist also being a bit puzzled as to why and how my advanced periodontal decease just kind of “went up and left.” I tried to talk to him about my diet change to explain but he just shrugged his shoulders…

And, then, I felt...invincible. Like nothing could hurt me anymore. I mean, I was so strong and flying high. “I must have healed my gut, “I thought. And then: “Wait, I can have gluten again!”
I mean, “only from time to time. ” Only when it was “worth it.” And “only when I have had enough sleep,” as I justified it to myself. And so I did. And what happened when I did have gluten, you might ask? Well, nothing super dramatic on the outside. My skin stayed looking very nice. But I felt like all happiness was “sucked out” of me (akin to a “Dementor’s kiss” in J.K. Rowling’s “Harry Potter”) . I would feel down again, for no apparent reason. Like my life was worthless. As I would learn later, gluten was attacking my brain. And, trust me, this reads better than it actually felt….And, every time I had gluten, I would also wind up with a nasty cold two days later. Because my immune system would switch to trying to fight off that gluten exposure, no more being there on its normal daily job, protecting from bacteria and viruses.

The last time I had A LOT of gluten was when our family went on vacation to Spain. “European gluten really could not hurt me,” I justified it to myself.. The sun was shining brightly, and the food looked delicious: WHO can resist amazing looking local tapas? I wound up with a horrific respiratory tract infection by the end of the trip.

And you know what finally stopped my self-experimentation (or, shall we call it, “self-destruction”), with gluten? Enrolling in the Full Body Systems coursework and getting to study IGG sensitivity as part of the “Immune Intensive” coursework. THAT was when I finally got it. I understood what was “going on in there,” as my mentor, Andrea Nakayama, would like to say.

You see, IGG Sensitivity is a really fascinating thing. It is NOT what your allergist (if you have one) is usually interested in.  Allergists look at IGE antibodies (those cause anaphylactic reactions, i.e., true allergies). But, when you are sensitive to a particular food and consume it or a regular basis, you do not react to it strongly. Instead, you are kind of living “in a fog.” Nothing is black or white, things are just kind of “grey” all the time. And, sometimes, they are so “grey,” you don’t really even notice how bright that blue sky over your head is. This is how it was for me. Which, when chasing after two little kids and being exhausted often, did not really strike me as such an oddity. I mean, as Moms, we are often “just tired,” right???  Or, we must “just be getting old,” right?? Right? Wrong!

The truly fascinating thing is that, sometimes.  you can actually feel really good shortly after consuming a food you are sensitive to.  You can feel happy and alert and even sound super funny and witty to your friends. And then you can feel really crappy afterwards. It is akin to a “Dr. Jekyll and Mr. Hyde” type of scenario. When “under the influence” of the food, you can feel energized, happy and gregarious. You come across as a fun person to hang out with. Yet, if you do notconsume it frequently, you start feeling tremendous withdrawal symptoms. Your can feel withdrawn and depressed. You may not even feel like hanging out with your friends… You NEED that food to get back to “normal.” Whatever “normal” means for you. Which frequently means achy joints, frequent colds, early onset of arthritis, debilitating headaches and PMS (nope, those are not part of a healthy menstrual cycle). And, yet, you get a “rush” when eating the food (hint: your cortisol is up and it is your immune system summoning up a fight).

The tricky thing is to stay the course. Because if you eat the food you are sensitive to, after not having eaten it for a while, you will feel like  you’ve been hit by a truck full of bricks.Why? Did you suddenly become “more sensitive” to it? Yes and no.

Your body is no longer accustomed to the regular “chronic” poison so it “speaks up loud and clear” when it encounters it.  If your body had a voice, it would be screaming: “Are you NUTS? Don’t you know this is POISON for us???”

This is akin to a “snake venom” analogy I have heard before. Apparently, professional snake hunters purposefully inject themselves with small dosages of snake venom prior to the hunting season. They do not die from it, they are just “slightly sick” all the time. The result is that if they were to get bitten by a real snake, they do not die from the massive dose of venom. Their body is “used to it.” But If they do not inject themselves with the venom prior to that accidental real life exposure, they are very likely to die from it.

So, WHEN can I have gluten again? For me, this translates as:  “when am I willing  to feel like crap on a regular basis again, to the point of no longer remembering what if feels like to feel good?”  When am I ready again to stop living my best and love what I do?  When am I ready to not be fully present with my kids again?  When am I ready to start catching everyone’s colds again?

You see, without gluten, I do not get sick. Ever. Yes, I know this sounds weird but it is true for me. Gluten is my only kryptonyte. Does it mean I am celiac? Nope, not at all! Did I ever test to find out? Nope, I didn’t need to. Besides, the only time you do not get a false negative on the celiac spectrum is when your intestinal villi are destroyed completely.  Translation: until your small intestine is destroyed completely by gluten, you cannot get a “celiac” diagnosis. Even while gluten may be slowly killing off your thyroid, your heart or your brain, all along. Do NOT work you way up to that, my friends. SO not worth it!

Incidentally, a similar thing happens with most “gluten sensitivity” tests. Unless you ask your doctor to order a test through Cyrex Labs (currently, the only accurate gluten sensitivity testing lab), your “gluten sensitivity test result” is worthless, at best.  And, at worst, it is damaging to your health to be told you “do not have a gluten problem” when you feel otherwise. NOT getting to the full gut destruction (a.k.a., complete small intestinal villus atrophy) is worth a lot. Because, when you stop in time, magic happens. Your body will perform that magic for you when you listen to it. That is when, just like in my case,  you finally understand why reacting to gluten again is a “good” thing.

You can stop worrying about “having gluten again.” Because it is not worth it. EVER.