Gluten is my Enemy

The oddest, scariest thing happened to me over the course of the last week and a half. My hands seized up and stopped working. I suppose it was actually my joints, but you get the picture. When I was pregnant with Tony I developed an allergy to rye. The kind of allergy where you break out in hives all over your body. It was bizarre. I’ve never been allergic to anything, let alone rye. I love rye! But no more, I cut out rye and wondered if maybe it would go away after the baby was born and my body went back to normal.
At the same time I noticed my right index knuckle was a little swollen. I put it down to baby water weight. But after the baby was born and I’d lost all the other water weight, the swollen knuckle remained. And then in April I began to have abdominal pain. I thought it was my left ovary which likes to form a cyst when ever I get even the tiniest bit chubby. But after a couple of months the pain was still there and my pinky knuckle had begun to swell. I was definitely going to have to have it checked out as soon as I figured out what was going on- and I kept bruising very easily as well. A sonogram with my obgyn revealed everything to be normal. A few weeks later I went to my gp. He wondered if maybe I had an abdominal adhesion which was causing a blockage. I went in for a CT scan. Nope. Some very minimal adhesions, common after a c-section, but nothing remotely major.
I went on a mostly liquid diet which resolved it. Then I ate some spaghetti and my stomach cramped and puffed up. Okaaaaaay, maybe I have to take it easy on the wheat, I thought. The next week I ate pizza made from Trader Joe’s herb and garlic dough. I broke out in hives. Turns out there’s rye seeds in the dough. Hmmmm. A couple of days later Mikael and I went to a pta meet and greet at Karl’s school. They had croissants and god help me, I ate 2.
The next day, Saturday, I couldn’t use my hands or wrists. The joints were frozen. I stopped eating much of anything. I went on an Anti-Inflammatory diet. On Tuesday I saw my gp who diagnosed me with osteoarthritis. Over the next few days I watched my joints blow up. It spread to my feet and back. On Thursday I tried getting a referral to a rheumatologist through my gp, which was the most hideous, Kafka-esque Gilliam-esque Brazil experience I’ve ever encountered.

Brazil-inline-06On friday my gp emailed me letting me know he’d sent the referral, but I had to have labs and xrays. I did the labs that day and the xrays on Saturday.
On Monday I called rheumatology, but my gp had never sent the referral. And he wasn’t at work. The amazing rheumatology nurse tried to book the appointment for me, but couldn’t. I had to wait for my gp’s fill in to make a phone appointment that afternoon to talk to me before they’d send the referral, despite my gp emailing me saying he had sent it. The fill in decided that she needed to hear my whole story before she’d send the referral. I was so NICE. I even took a deep breath and let her know that she seemed NICE and that I was going to TRY to be NICE about this. And afterwards with my HELP she found the email my doctor had sent me. She did have to grace to apologize.
de-niro-brazil1I really just needed Tuttle to fix everything.
I finally got an appointment from rheumatology for the next day, Tuesday. In the meantime, my hands and the rest of my joints in my body had been steadily returning to normal- including the first joints to swell months ago, my index and then pinky. But I still wanted to talk to the rheumatologist because I had a theory.
The rheumatologist was very kind. He informed me that my labs were normal and went through them. Next he went through my xrays and told me that they too were normal. I then told him that I had a theory, if he’d like to hear it. I opened my notebook, but didn’t actually need to consult it after all. It’s engraved on my memory. He said yes and I explained about my new rye allergy as well as what happens to me anytime I eat gluten. He examined my hands. There were still traces of puffyness in two of my joints, but my hands are normal. I have some slight bony growth on a couple of knuckles which is osteoarthritis, but it’s extremely minimal to the point where he would be surprised if it gave me any trouble in the next few years at all.
He thinks it’s likely I have a gluten intolerance, possibly brought on by pregnancy. Unfortunately in order to test for it, I’d have to start eating gluten again and there’s no way I’m going to do that. It was literally the scariest thing that has ever happened to me. Even scarier than my c-section scar becoming infected. Contemplating a life where I couldn’t use my hands was terrifying.

I know that Gluten Free is considered a fad and some people don’t think gluten intolerance is real, but all I can say is, my body hates it now and will do its best to immobilize me so I can’t ever reach for another croissant. Strangely enough, I don’t even miss it. Although I did celebrate yesterday with a gluten free cookie, I’m not rushing out to buy gluten free bread or pasta. I’m just going to let my intestines heal up over the next 6 months before I delve into the hoard of gluten substitutes. I’m also taking it very easy. The last few weeks have wrecked me. It’s light out at 9:30 for me. And I already feel so much better. My stomach is no longer swollen, my energy level is getting better, my happiness is improving- although the Zoloft may have something to do with that. After 5 years of being ssri free the perfect storm of my worsening health along with my Grandfather in hospice turned me into a perpetual motion machine of anxiety. I recognized the signs and decided it was time. I don’t enjoy feeling like a hive of bees has made their home in my chest. Hopefully I’ll be off them by January. In the meantime, I’m just so thankful they exist.
Of course, this means Pumpkin Spice Latte and I are breaking up. It’s a fucking Romeo and Juliet story, I tell you! I love you PSL, but we can’t be together bc no one knows if you’re gluten free. I’ll always remember our times together, though.

Brazil stills from:


4 Comments Add yours

  1. janprytz says:

    I’m so sorry this happened to you. I’m proud of you figuring it out. And, your post is brilliantly written.

    1. Thanks Janice. It’s a pretty big adjustment. I guess luckily for me it’s becoming more common so that makes shopping a little easier.
      It’s still really weird.

  2. Centered text so gotta admit that I stopped reading after a couple of paragraphs. Sorry to hear of your condition though.

    1. I had no idea centered text was hard to read.
      As long as I watch what I eat it seems t be okay. Lots of changes though. I research every restaurant I go to to make sure they have gluten free options. And I’m now that pain in the ass person who has to say, “Hi there, I have a gluten intolerance & I saw on on your website that you have gluten free options?” Luckily, the restaurants have been super nice about it.

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