Gluten-free #lupus

I’m almost a week into eating gluten-free. I went to Whole Foods and I bought all the gluten-free staples, pasta, bread, crackers, and a few other things. It was a good reminder how fucking expensive it is to be sick. I basically doubled my grocery bill. A loaf of gluten-free bread runs around $7.50. It’s hard to find anything in Whole Foods that is under five dollars.

So here I am, wandering around this supposed health-food wonderland, still having to put items back because of certain contents. I was finding that a lot of the products, while “organic” or “yadda-yadda-free” still have an unhealthy amount of sodium or sugar in them. Maybe it’s just me, but I feel like for what they charge for groceries, I shouldn’t even have to double-check the nutrition facts. Whole foods is a gluten-free superstore but for anyone that has to eat low-sodium or low-sugar, it is as frustrating as anywhere else.

I guess my point is, no matter how “healthy” packaged food claims to be, it just isn’t.

The gluten-free foods I’ve been eating haven’t been that bad, but you can certainly taste a difference. It’s like eating NASA space food. It just doesn’t seem like real food. If it becomes all you eat, you could probably get used to it…eventually. Mostly my problem with eating these foods is they don’t seem to digest. I feel full for hours after eating it, and it’s not a good thing. I have gastritis and I already have a problem with feeling full too easily or for too long. It’s uncomfortable and at this point I’d just rather eat real rice than pasta made from processed doughy rice foodstuff.

The organic vegetables have been pretty great. I might try to buy them more often. I’ve been eating more of a variety since going to Whole Foods. Between the acid reflux and the salt and sugar sensitivity, my diet hasn’t been as nutritionally varied as it used to be. I figured I can try to get some variety by starting to eat different vegetables.

My stomach doesn’t feel any better since eating gluten-free. The doctor just wanted me to try it for the heck of it to see if it would help the inflammation. He didn’t want to put me on any prescriptions right away because they can sometimes cause problems with calcium absorption and weaken your bones. I understand his point, but also my diet restrictions are ridiculous, and could also be causing deficiencies in other vitamins and minerals. I can’t have anything even remotely acidic. If I eat one wrong thing I could risk being up all night with acid reflux. I’ve basically given up fruit. Food is depressing.

I wanted to go see a dietician so maybe I could get a clue as to what the fuck to eat. Most of them don’t take insurance. They seem to be part of that “Malibu Barbie” plastic-surgery-gym-health culture, and I don’t know how much they would be able to help someone like me. I can just picture walking in to a clinic where everyone has fake tans and fake tits, and feeling totally out of my element. I don’t want to be in an environment where they’re trying to sell me something instead of trying to help me. Perhaps I’m getting too far ahead of myself. But I want a dietician that practices real medicine. It would probably help if I didn’t live in California.

End rant.



  1. That’s a bad mood you’ve gotten into Jill but I guess that I would be pissed having to eat the stuff that you do.
    It’s odd for me to read of Insurance as all of my cancer and Addison’s treatment and ops are covered by our wonderful NHS. I saw my lovely Endo this week and we deciderd to reduce Hydro as my face is looking a bit fat. I eat well and should get more exercise but hey ho. I got blood tests to see if diabetes is an issue as I get tired real easy.
    I look forward to reading your posts and look forward to the time when you feel better.
    As for me I getting cancer scan results next week so nerves a jangling.

    I hope you don’t mind me following your progress, you seem to have such a fight every day; thank goodness for family eh?

    • Not so much a bad mood, just being a smart ass šŸ™‚ But yes the US health insurance system makes it a lot harder to be a sick person than it has to be. It has caused a lot of people a lot of unnecessary worry and a lot of people aren’t getting the treatments or medicines they need because of greed. And even when the insurance does pay for something it seems like you have to jump through hoops and be on the phone for hours to make it happen.
      I tapered down hydrocortisone 10mg because I was on too much and it was making me have osteopenia. I’ve since tried to increase my calcium and hopefully I can get to a point where I can exercise more so my bones are stronger again. It took me about 2 months to taper down, I wanted to do it really slow so I wouldn’t get the shakes. So far I’m still doing good. I was debating on trying to go down another 5. I still seem to need to stress dose some days so I don’t know if I could do with 5mg less.
      I’ve been tested for diabetes before, came up neg. I would like to be tested again as I seem to pee too much and I’m too thirsty. My blood sugar never measures high but eating anything sugar-y makes me feel awful. I do tire easily also and I get tired after I eat meals. There’s a study that the hydroxychloroquine I take to treat some of my lupus actually can protect a person against developing diabetes, so that’s some interesting news. I’d like to see more on it.
      Thanks for reading my posts, I’m always glad to have comments, and glad to have anyone following along. My family is really amazing I’m definitely lucky.
      I’m sorry you have to wait for the results of your cancer scan. That’s always the hardest part, the waiting. I’ll be sending good vibes for good results.

  2. Food is such a pain….sometimes I wish I could just take a pill and not eat. I also have Crohn disease, so my stomach is always in an uproar. I saw we go to McDonald’s and pig out!

    • Food is a pain. I have the “wish I could take a pill” attitude about it too. People think I’m weird when I say that. They don’t get it. It must be especially hard having crohns. I would really love to eat a plate full of chili dogs.

  3. In my search for a dietician/nutritionist that would take our insurance, I found one about two hours away… one else within a hundred miles of where we live….while the federal government is shaming people for a lot of the foods they eat…they don’t feel nutrition assistance is medically necessary?…Very hypocritical …and I’m right there with you Jill….a fitness club in Santa Monice, where we were referred, is not my idea of health care for you….I’m sure we’d be greeted by the twin, buxom blonde tanning bed goddesses….”Charm and Charisma”…thanks…but no thanks…..people who live on a slice of cheese every day and lay in microwaves for that “healthy look” aren’t my idea of “care”….love you baby girl.

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