Now a misnomer

My head just feels full these days.  Like the idea of keeping an open mind will mean that things might start falling out.  Full with school (just how do I get that PCR to work?).  Full with thoughts of my cats (will putting Thor back on the duck/pea food re-cure his fur pulling?).  Full with personal projects (why do I actually feel that way about that person?).  Full with general to-do projects (just what does go into conditioner?).  But also full with thoughts of food.  

Around the time of my last post I was contemplating what it would take to finally get tested for celiac disease.  I’d already talked to my doctor, and she had placed the order for the tests.  But having been gluten free for almost 9 years, we were unsure of how much gluten I’d have to eat for how long to get an accurate test.  Unfortunately, the medical literature is pretty much lacking in that area.  The best I could find was that 10 grams a day (about two slices of bread) for three weeks was insufficient in one group of patients to significantly alter the various celiac blood tests.  So I knew I had to shoot for more than that and longer.

December 21st I took the plunge.  With an awesome donut from a local bakery.  Ok, so I had two.  And I’ve been eating gluten since then.  

Shockingly, my symptoms have not been nearly as bad as I thought they would be.  But boy, the one severe beer hangover I had a few weeks ago was SEVERE.  Not just the hangover, but the glutening symptoms that went along with it.  

But more oddly, the symptoms that I expected would come back with a vengeance, haven’t.  While I wouldn’t call my bowel movements normal for me, they are hardly anything that would be cause for concern.  I haven’t had a single migraine like I used to.  But I have had some acid reflux.  And it’s the occasional bad flare of acid reflux, where it’s so bad I can feel that tightening in the back of my throat, that concerns me a bit.  Nine years ago my throat was so bad I brought myself to the ER one night and learned the next morning from the ENT doctor that my gagging sensation was actually stomach acid burning the back of my throat.  But other than that, I’d almost wager to say I’ve been fine.  Other than the 15 pounds I’ve gained in the past two months.  Which all leaves me befuddled.

So the week before last I finally went in and got the tests done.  I figured two months of eating gluten pretty much every day, and a reasonable portion every day.  The doctor ordered a celiac panel: a general IgA test to make sure I’m not IgA deficient, and the tissue transglutaminase and anti-gliadin tests.  I also requested gluten and wheat allergy tests, both of which were IgE based, figuring that I was there, why not.

My results?  

All normal.  

And now I’m left completely confused.  And frustrated.  I no longer seem to know how to eat (which at least partly explains the 15 pound weight gain).  I no longer feel like I know who I am.  Being gluten free was a large part of my life and being told I’m (likely) not celiac, it feels like a huge part of my identity has been ripped from me.  Have the last 9 years been a waste?  All that time and money I poured into being gluten free.  All the heart ache.  And frustration.  For this?

But mostly I don’t know how to eat.  I don’t know how to eat like a normal person because the last time I did, I was in my very early 20’s, and not eating like a normal person any way.  I no longer seem able to say no to treats (which again, likely explains some of the 15 pound weight gain).  I’m quite cognizant that I could still be celiac, and the test just didn’t pick it up for whatever reason.  But for the time being, I’m not convinced that I need to return to being obsessively gluten free.  But I’m not sure what else to do.

Even most of my screen names revolve around the one I use here, gfpumpkins.  Gluten Free pumpkins.

I know this isn’t an issue I can solve tonight.  But I’ve been sitting with it for two weeks now and I still feel like I’m stuck in the same spot of utter confusion and disbelief.

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3 Responses

  1. Ahh, so sorry to hear about that :-( It is always a bummer to get medical news that is confusing or vague. After all, normal just means no test signal, right?

    Do you like eating gluten free? Maybe low-gluten is the best for your body. Let us know what you find as you continue on.

  2. I recently found out that I’ve been reacting to gluten, and going through all of the possibilities sometimes makes my head spin. There are few, if any easy answers. This is a complicated disease, and I have come to realize that research and knowledge in this field is nascent. Personally, I think the fact that you have acid reflux is enough to know you react badly to gluten.

    I read a summary somewhere about an Italian research project- they figured out how to remove the component that creates an IgA reaction from wheat, and made pasta with it. They fed the pasta to coeliacs, who then had bad reactions to it. Coeliac disease could be a reaction to any of 50-60 components, of which we have a widely accepted and available test for 1. IgA tests by themselves seem to be insufficient.

    A thorough genetic test, may be able to give you better answers. The best ones seem to be able to tell you which systems are adversely affected by gluten, based on the genetic variants you have.

  3. Congrats on the negative blood test results! Have you considered following up with a small bowel biopsy to make sure the histology is normal (now that it’s been almost 6 months)? I was only GF for 3.5 years and it was so weird to get negative results. Two years later, I’m not sure I could even suggest recipes to people who are GF. It’s been a few months since you wrote this post, and I hope your diet is starting to feel “normal” by now!

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