Where I am now

I have this book, The Allergy Exclusion Diet by Jill Carter and Alison Edwards. This book called out to me from the shelves at the Whole Foods in Park City last spring when I drove through on my way to a writer’s retreat. I was feeling triumphant at the moment, because for the first time EVER I was able to take a long driving trip on my own. See, normally if I’m in my car more than 20 minutes, I’m fighting sleep. Not just sleepy, but nearly comatose. The kind of sleepy that makes being awake painful.

I had given up gluten a month or so before. If I hadn’t, I never would have been able to make a five-hour drive unless Kevin drove and I was the sad little passenger sound asleep with her cheek against the seatbelt.

Also, my sisters names are Jill and Alison, so it just seemed that this book was meant to be mine.

The book has a 28-day elimination diet that seems really good after about the first week. The first four days you’re allowed to eat lamb, rice, lentils, pears, mineral water, and sea salt (thank God.) Four. Days. Maybe if I liked pears or lamb, that wouldn’t sound like a prison sentence. But I don’t.

The books says that if you aren’t having serious allergic reactions to foods, you can start with more foods than those four. I don’t have allergic reactions in the sense of swelling throat or swollen tongue (like my best friend’s daughter when she got a corner of a peanut and scared the pants off me.) And I would like to succeed. So I’m going to just do less severe elimination diet in January.

Therefore, it’s official. January will be my self-care month.

What will get me through is knowing that at the end I will be starting the year out feeling really, really good. I did pretty good for like three weeks after Thanksgiving, but this Christmas week I’ve been eating gluten like it doesn’t make me sick. To motivate myself, I thought I’d give a list of why exactly I need something like this. I’ll start at the top.

  • My hair is falling out. In clumps. Scary clumps that remind me of when my mom got really sick and her hair started falling out. She had guillain barre syndrome and ended up paralyzed in a hospital for a month when I was ten. Yeah. That scary.
  • I have brain fog. Brain fog feels like there is a film between my brain and the world. I don’t see things clearly. I spend a lot of time staring into space trying to get up the motivation to do anything. I also lose words. Yes, they are just gone. Not big long words either. Like the other day I was talking to Kevin and I had to say…you know, what your mother is to Ruby…because ‘grandma’ was gone. In a black hole. Again, pretty damn scary.
  • My eyebrows are falling out, too. Especially the outer corner of my left one. Weird, I know. Right now they’re actually ok–but if I don’t stop with the gluten thing it’ll happen again.
  • My skin is itchy, dry, and scaly. Gross. I know. I’m sorry.
  • My lips are chronically chapped to the point of pain. They peel, they crack in the corners, and sometimes they swell to the point of looking ridiculous.
  • I have thrush. Again Gross. I’m sorry.
  • Every joint aches. Sometimes I feel like I’m an arthritic octogenarian. I especially get severed pain in my lower back, hips, and legs. When I’m tired, the pain is nearly unbearable, and makes it difficult to sleep. I feel weak a lot of the time and can’t participate in the active things that I’d like to. For instance 20 minutes standing at the kitchen counter cooking or washing dishes is excruciating.
  • My belly hurts. All. The. Time. This is way way TMI–but I have to know where every bathroom is when I’m not at home. It’s a necessity. For years I have attributed this to IBS. Now I’ve learned that IBS is often the label they put on undiagnosed gluten intolerance. I’ve had a bad stomach as long as I can remember, since early childhood. I had ulcers when I was 8 and had to eat baby food for a whole month.
  • I have periods from hell. I know, I know. I’m SORRY. But it’s true. Since I was 14, like clockwork, my period has always been preceded by two days of the flu. The kind of flu that makes you think that being dead would be better. And then a full week of debilitating cramps and heavy bleeding. (okay, I’ll stop now.)
  • Serious gas and bloating. Okay, last one, I swear. And I think this one is self explanatory.
  • Swollen legs and hands. This is one of the first symptoms when I’m eating gluten. My legs and feet especially swell up like water balloons. It’s really not fun.
  • Exhaustion. I saved this one for last. Because it is the worst. If I’m eating gluten, as I have been the last week, I could sleep ten hours and it wouldn’t matter. I’m still so fatigued that I can barely function. I mentioned before that this fatigue makes it unsafe for me to drive more than just to and from work. This exhaustion seeps in and affects every inch of my life. It got really bad when I was pregnant with Ruby and just never went away. I’ve read since that an event that’s traumatic to your body–like pregnancy–can trigger a latent gluten intolerance.
  • I can not stop gaining weight. I’ve gained about sixty pounds in the past five years, and until I stopped eating gluten nothing I did stopped the pounds from coming on. When I’m eating gluten I crave simple carves to a eating-disorder degree. There is no such thing as a little cheat for me, because one bite of a sandwich and I want all the flour-y, sugar-y food there is. All of it. When I’m gluten-free, after a few days those cravings go away like someone  turned off the crazy switch in my head.

I’ve been to many doctors in the past five years trying to get some answers to why I’m so tired all the time, why everything hurts, why my hair is falling out. Almost without fail the symptoms were blamed on my weight. I come from a family of fit, slender people. I am the heaviest person in my family by more than 100 pounds. My children are not overweight. My siblings aren’t. My parents aren’t. This is not genetic. This is–something else.

And it’s not to blame for my other health concerns. It is one of them.

So wish me luck with lamb/pear/rice for four days. I can do this. I want to feel good again. I have to.



Filed under body

5 responses to “Where I am now

  1. You could be describing me here. 2 months ago, my doctor advised me to avoid gluten which I do. I also hate lamb and pears (and lentils). So, I will be following your progress on this allergen-free diet. I hope you feel better soon!

  2. Cathy

    Have you had your thyroid checked? I had all the above except the gas and I had major hypothyroidism. I take a little pill every day and I feel like my old self again. I get it checked every 6 months with a simple blood test to make sure my dose is on target, but it has made a huge difference. I forgot them while on vacation and every symptom came back with in a week, so I hope you get it checked.

    • I have, more than once. The tests have always come back with no indication of a problem. I suspect that I have something subclinical going on, but I haven’t found a doctor who is open to considering that. I was barely even able to find a doctor who didn’t just write off all my symptoms to being fat. I’ve even had a dentist blame my weight for novicane not taking. I guess skinny people have no problems?

  3. Amy


    I found your blog from comments you left on Emily’s Under $1000 per month. I have Celiac so I have to eat gluten free too and when you mentioned that it caught my eye.

    Have you considered you might have Celiac disease? I had to insist my doctor test me when I started having GI symptoms even though I have a family history. The first step is a blood test and if that’s positive you will need an endoscopy. But you have to be eating gluten at the time of both tests. It is estimated that 1/133 people has Celiac and over 90% are unidentified.

    I do post gluten free recipies on my blog about once a week if you are interested in stopping by.

    Best of luck with your gluten free journey and if you have any questions about going gluten free I’d be happy to try and help.

    Amy @ thecircusmcgurkus.blogspot.com

    • I had a blood test, and it was negative. But celiac is one of many reasons people can be gluten intolerant. I’m so sick when I eat gluten, and recover so dramatically when I don’t, that there can be no doubt that gluten and my body don’t mix. I’m definitely checking out your blog! Thanks for stopping by 🙂

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