My Life with Lyme: Gluten, Blogging, and Fresh Starts

Found at asliceoflyme.blogspot.com
Found at asliceoflyme.blogspot.com

Hi, my name is Jacqueline, and I have been battling Lyme Disease since I was 12. I am now 31, and still have to consider my body daily in ways many people don’t. And I’m okay with that.

I read up a lot about what’s going on in the gluten-free world, and as of late have been taking my place as someone who does not have Celiac disease in it more seriously.

See, I’ve been off of gluten since my first diagnosis of Lyme disease, when nothing was really working to make me better. In a rather progressive move (remember, this was the early nineties), my mother brought me to a “different kind of doctor”. In some ways I hated him – he took me off wheat, milk, eggs, beef, soy, sugar, corn, tomatoes, green peppers, citrus… I would sit in his office for hours while vitamins were injected intravenously. It was a really boring way to spend time as a kid.

But… within a few months… I could walk again.

Because that’s how badly Lyme hit me. For a while I could walk with crutches. Then I was wheelchair-bound. Then crutches again. I would go to school for a few hours a day, swim at the YMCA to get my joints moving, and spent most of my time in bed. I remember during one summer trip to see my sister at camp, my mom would hang my IV bag from a hook in the car to give me my doses of antibiotics. It was a mess, and as a kid it was hard to process.

Which is why I haven’t eaten gluten or milk since, and watch those other buggers in moderation. Oh, except for a bout in college my freshmen year, which kicked my ass into another flare my sophomore year which brought a whole new slew of lingering symptoms and set me on a 6-month cycle of driving the 90 minutes from class to weekly bicillin injects and picking up lots more vitamins again.

So, yeah, Lyme has stuck with me.

The purpose of this little history is because, out of the many things I do to keep a relative level of health, the gluten thing is the most popular right now. I’m not on board with 100% of the gluten-free world, as I see its misinformation and misrepresentation in the news as damaging – like when a really shady journalist writes a negative and uninformed piece that abuses research and flaunts insensitivity (see Why The Billion Dollar Gluten-Free Industry is Secretly Laughing at All of Us by Dana Baardsen). And when a really well-written piece by someone who’s had Celiac disease for a long time gets berated by readers who don’t read correctly (meaning don’t read a whole piece and therefore miss out on key information) and are subject to selfish, arrogant and hurtful responses (see this piece I totally support by Elissa Strauss at Jezebel and a piece on Easy Eats by yours truly). And then there are the awesome posts about inclusivity such as those at Celiac and the Beast and (I hear) coming up later today on Jules Gluten Free.

TJI_Sipress_diagnosis

Found at lymediseaseguide.org

But here’s where I fit in – I don’t have Celiac disease, which is often given the greatest focus in regards to gluten. Not that I want or feel any need to take more focus from others with chronic illnesses that can’t digest it either, as what will happen to me if I ingest a little gluten is extremely different and far less dangerous than someone who does have it. But I have Lyme disease. Though it’s delightfully inactive right now, my third bout was even more debilitating than the first two and left me with much more to manage on a sustainable level. But when I keep focused on several things, I live with relative health and happiness. I am a very lucky, healthy, whole person.

But gluten is just one part of the picture.

This blog – aptly titled I Am A Whole Human Being – was originally meant to be a home for discussing the many things I do to keep a level of relative health, but as the gluten-free social circle widened, my focus on this site narrowed. And while I’m still going to be blogging about all the sweet gluten-and-dairy free friendly treats I’m baking up, it’s starting to take a little turn again. Last week I posted “Why are Women the Gluten-Free Gladiators?”, because I’m curious as to why this world has opened up careers for so many of us. Soon I’m going to start throwing more questions out there; weight loss and chronic illness, how we choose careers that help or hurt our illnesses, the “more is less” approach to eating (in regards to putting in better foods and reducing harmful ones), what to say or not say in certain situations as far as your health goes, the longevity of family relationships in regards to your illness etc.

I hope you’ll join in this conversation, and thanks for listening…

Or reading…

Happy Passover / Easter / Spring!

- Jacqueline

And thanks to my lil bro for being a jackass who gives really accurate editing notes as he reads my live posts while I type from a computer five feet away.

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11 Comments

  1. Chris says:

    I would like to hear more about how you (and others) deal with the pressures of trying to go against the “American diet” and how you discuss this notion with people who would absolutely benefit from changing their diets…but are bound and determined that they are already eating healthy. When I approach people I love with new, valid, FACTUAL information, so many times they come back with comments like, “Well, I’m doing everything my doctor tells me. I’m sure he’s doing everything for me that can be done.” This blind trust aggrevates me beyond all!! And, now that I’ve learned how the original ‘food pyramid’ was designed to promote the meat and dairy industry, I can clearly see why so much is wrong with the ‘food’ in this country and why we, as a general population, are SO UNHEALTHY! I know being a great example is the best way to get the point across but, still, they are so resistant and it’s starting to break my heart! Just because it ‘tastes good’ doesn’t mean it always is good…..

    As a society, we are busy. Too busy. Too busy to pay attention to the way different foods make us feel. It’s pretty basic; if you don’t feel very well after you’ve eaten, then you obviously ate something you shouldn’t. If you feel tired, then, again, maybe you shouldn’t eat what you ate. Or, maybe you should try eating less of it. Or, just less!!

    How can make an impression that will make a difference? How can you make someone want to see the truth?

  2. Molly says:

    Thanks for the important reminder that gluten isn’t the entire picture for health, and celiac isn’t the entire picture for gluten. Looking forward to seeing the questions you throw out to your readers!

      • I have seen that one and am mixed about it. On one hand it is, yes, very annoying to those with serious gluten problems. But I do very much agree with ““We’ve come to address health as something beyond removal” of ingredients, he says. In other words, we’ve abandoned the idea of deprivation and decided that instead of simply eating less to feel better and be healthy, we’ll just eat different stuff.” But this applies to the section of the gluten-free community that doesn’t have to be. I think there are two circles for this; those who go on the “fad diet” of it and shell out for products for a limited amount of time until they move onto something else and those who are healthier and whole-er because of it and have taken on a lifestyle that only STARTS with removing gluten.

        • Molly says:

          I was most bothered by the conclusion that seemed to suggest “wellness” was a fake goal not worth investing in. The writer veered off into a strange place at the end. If someone is actually avoiding gluten and NOT getting any health benefits out of it and NOT doing it for that reason, then that person is probably wasting his/her money. But there are kinds of wellness beyond weight and waistline. The pressure to have everything we do for ourselves be reflected in our outer appearance is, in my opinion, probably a major player in why we all feel so unwell in the first place.

  3. Iris says:

    Looking forward to these new posts!!! As you know, I also don’t have Celiac Disease and it can be a struggle to constantly have to explain to people why I HAVE to eat gluten-free and why it’s not a choice for me any more than it is for someone with Celiac Disease. It’s about my health, pure and simple.

  4. Rachael says:

    Hi Jaqueline, My friend Hazel introduced me to your site. I’m excited to read more, I too have Lyme and am just starting to adjust my lifestyle.

    • Oh darling, hang in there my friend! I’m sure a lot about what we go through is very different so I hope you’ll join in my discussions here and ALWAYS feel free to shoot thoughts, questions or merely frustrated rants my way!

  5. jay says:

    Thank you so much for this, and all the support and love you send in your posts. I’ve been gluten free for a year and a half and it’s changed my life. Between the ages of 15 and 22, I suffered from all kinds of severe joint pain- which doctors were considering invasive surgery to fix, and debilitating stomach issues. No one could tell me what was wrong, and repeated physical therapy did nothing. Doctors kept denying that the Lyme I contracted as a child which was diagnosed late could be doing anything to cause the current problems. It’s so important to raise awareness of non-celiac gluten free living, and that we’re not just on a diet bandwagon. It would be amazing not to hear “Well, can’t you just have a little…?” or “You’re so inflexible” when our health is on the line…

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