I Fought the Gluten and the Gluten Won

My Mind on Gluten

My Mind on Gluten

The day after Thanksgiving, I started a gluten challenge so that I could get tested for celiac disease. I’d been gluten-free and then on the GAPS diet throughout the previous year. I wasn’t perfectly healed off gluten and on GAPS, but everything has gone downhill since reintroducing gluten.

My mind on gluten is a trap on a hair trigger. Yesterday, I got caught.

The day started off fine. Sure, I had my bad tummy and stiff hands in the morning, but I got up anyway and got on with things. Our office is in desperate need of furniture and a grant that will pay for it came through, so I had the happy plan of a shopping date with my sweetie. I measured the office and drew out a plan.

Making a fist this morning

Making a fist this morning

TinyHands started taking down the Christmas tree. Well, when cleaning up the tree mess we noticed the bottom of the blanket that hides our hideous fireplace was soaked! The chimney is not capped and the flashing is no longer water tight, so water had come down. We had to uncover the fireplace and face the disaster. I was still doing pretty well. I left messages with three repair companies, said a little prayer that insurance would cover it, and set to tidying up the living room.

And here started my troubles. All the stuff I’ve been managing not to look at jumped out at me. Dust on the baseboards. Fingerprints on the windows, the pad under the foot of the couch that isn’t adjusted perfectly. The library books with bookmarks sticking out at different angles. The scratch I put in the floor, the windows that were installed a bit crooked or became crooked when the house settled. The bad job done on the sheetrock. The wires from the TV and the lamps. Problems with the paint job. The way nothing is perfectly lined up with anything else.

Ugly, water damaged fireplace

Ugly, water damaged fireplace

I can clean up some things. I can sweep the floor or wipe down the baseboards. But I can’t fix the windows, and our furniture will only fit in the house in certain ways. And that fireplace – I kept seeing the fireplace. Our ugly-in-the-first-place, water-damaged fireplace.

In past years I wouldn’t just see these things. They’d become a steady stream of self-hatred. Everything wrong with my house became my personal failing, proof that I should die. Over the past year I had gotten a bit better at managing this thought process and letting go of what I couldn’t fix.

But yesterday I got stuck. I didn’t fall into a suicidal spiral of defeat, but I did go into full on panic mode, and got trapped inside myself. When TinyHands asked me where to hang the light (we’d rearranged because our piano arrived this week) it was too much. The couch didn’t line up right with the piano. The light had to line up right with the couch. Commence thought loop. I need to line things up. I can’t line them up. Things are not lined up. I need to line them up. I can see the wires. The fireplace. I need to line things up…

The words couldn’t come out. I’d try to say something, but my hands would come up and smash my face, rubbing it flat over and over. I’d stutter, repeat words 20 times, have to stop. I couldn’t look at TinyHands. I’d stutter some more, half a phrase, half a word. Complete distress. I could see myself from outside, know exactly what I wanted to say, know how ridiculous my need to have everything lined up was, but it had taken me over.

Eventually, I soothed myself and started to recover. I was able to get up and go into the bedroom. I put away the clothes that were out and made the bed. I could see the top of the dresser. I’d organized it before, but stuff got piled up there over time. Kid2’s cactus that needs trellising and repotting was taking up space. Odds and ends the kids have given me, and change, and candles, and my wallet are all there, where they should not be. I don’t have anyplace else to put these things. The closet door is missing the handle. The closet has more clothes than fit in it because it is so tiny and the door falls open from the weight of things hung from it. I lay on the bed, trying not to freak out.

TinyHands came in the room and found me there. She tried to talk to me. More stuttering. Then silence. I could tell if I talked to her I would hit myself. My arm was going to jump and hit me in the face, over and over. This made me laugh at the absurdity of wanting to talk to her, having things to say, seeing her worried, but just being able to peek at her from the corner of my eyes and shake my head a little. I was so trapped. I couldn’t escape it. My right arm started jumping. It felt numb and wanted to hit me, so I held it down with the other one and it kept jumping around. She was looking so scared for me. Eventually, I sat up and sat on my hands and found a way to talk a little.

I told her, “This gluten challenge is over.”

Yummy Pizza

Yummy Pizza

Slowly I turned back on that filter that makes it so I don’t really look at anything, so that I don’t have to see all the things that are wrong. Since it was dinner time before I was able to change my mental state and I needed to get out of the house, we went out for the two foods I knew I’d never eat again but really like – New York style pizza and a cinnamon roll. I hadn’t been eating this kind of stuff during my challenge (or in the previous year, either) because of the fresh dairy and the sugar. I’ll get my blood work tomorrow or the next day, and then this gluten challenge will be over forever, regardless of what they say.

Cinnabon

Cinnabon

I’d like to know if my mental (and physical) problems are due to malabsorption from celiac, or from other effects – autoimmune attacks on my nervous system? Allergic reactions to food molecules? Opioid effects? I’d hoped that this challenge and the subsequent blood work would show me which of my problems were caused by gluten, how it was messing with me, and what other factors may be at play. My gluten challenge may not have been long enough to get medical answers to these questions. Maybe science doesn’t have the ability to answer these questions either way.

In any case, it’s back to GAPS Intro for me. I’ve got some healing to do.

Update February 24, 2012: I did get my celiac test results and they were negative! Obviously I have some sort of reaction, but it is not a celiac reaction that bloodwork can detect. It took me until this week to finally stop going into those terrible stuttering loops at the slightest provocation. Yes, that’s over 3 weeks since quitting gluten, after only 2 months of eating it! I’m still recovering.

This post is part of Fat Tuesday, Slightly Indulgent Tuesday, Sunday School.

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9 comments to I Fought the Gluten and the Gluten Won

  • I hear you. The world looks different when I eat grain. Not only does my body ache, but I get anxious. I always had a hard time giving up nicotine, until I cut out the grain – then I was able to quite cold turkey…. with zero with drawl symptoms.
    Grains mess with the body and mind. I think most people would be happier and healthier if they went grainless. I know I am.

    • Mama

      That’s really interesting about the nicotine! How long were you grain free before you were able to quit?

      I found that cutting out sugar was the hardest part of starting GAPS and going grain free for me. I had serious withdrawal symptoms and constant cravings. Once I got past that, though, I was much better off.

      Did you have withdrawal symptoms when you cut grains? Did you quit sugar, too?

  • Sorry you had such a trying day. Hope all these will be behind you for good, and soon 😀

  • Stephanie

    Sorry you went through that. My fists used to look like that too. I can also relate to the crazy. It is weird how disturbing disorder can be. I hope you get the answers you need. I think that your response to the gluten would be enough answer for me. I wish you a speedy recovery.

  • Thanks for linking your great post to FAT TUESDAY. This was very interesting! Hope to see you next week!

    If you are going to have a celiac panel that tests only 2 antigens to gluten. There are at least 50 antigens to gluten and one lab does the test.That is why many people test negative. If you are interested in the lab contact me and I will hunt out the name.

    Be sure to visit RealFoodForager.com on Sunday for Sunday Snippets – your post from Fat Tuesday may be featured there!
    http://realfoodforager.com/fat-tuesday-january-24-2012

    Share your great fermented food recipes at my Probiotic Food Linky – open through Februray 6, 2012.
    http://realfoodforager.com/probiotic-food-challenge-linky/

    • Mama

      Thanks Jill,

      I imagine you’re referring to the Cyrex Labs Array 3. They actually offer a lot of other interesting tests as well which assess overall immune function and cross-reactivity.

      Enterolab has the fecal tests which are more sensitive, but also more controversial. (Many claim the “false positive” rate is very high).

      I am considering ordering the Cyrex labs rather than the standard panel, but haven’t quite made up my mind yet. I’ve got to do it quick, though, since I need to get off gluten ASAP. The Cyrex Array 3 does not include the EMA test, which is very specific to celiac disease. It does run the Deamidated Alpha Gliadin 33 MER IgA and IgG which interests me, because the Deamidated Gliadin Peptide antibody test is new to the standard celiac panel (and not readily available) and is considered to be very specific to celiac disease. I am not sure if these are the same tests or not.

      The Cyrex panel doesn’t seem to include total IgA, which is critical to interpreting all of the results involving IgA. I suppose I could get that test separately.

      My thinking up until just the past couple weeks has been that the main information I really wanted out of a gluten challenge and testing was whether gluten was triggering autoimmune damage. I also wanted to know if celiac was solidly in my family – a standard positive test would highlight the importance of the issue to others in the way alternative testing would not.

      If my problems were due to other kinds of reactions, I reasoned, I would be able to base my intake potentially gluten cross-contaminated foods on my symptoms, rather than on absolute avoidance, as we must for our son. I’d also know to look for causes other than gluten cross-contamination as a first step in resolving mystery health issues.

      I do know that I have a problem with gluten, one way or another. Having the extra information provided in the Cyrex Array 3 would be very interesting. But I’m not sure how I would use the information differently than a standard panel.

      I’m definitely open to suggestions!

  • Sarah

    Thank you for giving me the words to explain to my husband what I feel like when I am on gluten and when I am not!

    • Mama

      You’re welcome. It’s nice to know other people can relate. I hope he understands… and that you get off the gluten so you can feel better for good!
      -Mama

  • Kristen P

    Wow, I just found your blog because of your body image post and I can say I feel you! I feel very bad when I am on gluten and I am currently on it and am trying to gain the strength to get back off of it. It is so powerfully addicting and tempting for me despite how badly I feel on it. I am looking forward to reading more of your story.

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