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About Offthegrid

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  1. After eating gluten-free rice noodles last night with the most delicious tomato sauce on the planet and getting sick, I was confused as ever. Sick? Over spaghetti? :o

    I looked at the ingredients of the tomato sauce. Sure enough: soybean oil. I guess the dilemma over whether it's soy that makes me sick in addition to casein is solved, but I just want to cry. I feel like there's so many things I can't eat that it's just ridculous. I'm really depressed and frustrated. :(

    But *hopefully* if I go soy-, dairy- and gluten-free, I'll feel better. I just hope.

  2. The first six months were really, really, really hard for me. (And sometimes it still is!)

    My best advice is to make sure to always take food with you, especially in the beginning. Friends and family may not understand gluten, and you don't want to be at someone's house, realize you can't eat dinner and then have *nothing* else available to eat. That's when you'll say, "Oh, just this once," and then you feel bad for a few days or more.

    Also, if you don't start feeling better in 2-3 weeks, you may also have some additional intolerances. Some are lactose intolerant, but I am casein intolerant. (Casein is a protein in milk; lactose is an enzyme.)

  3. I had a lot of problems with this, especially when I was first diagnosed. I was mad at the world, essentially, and everyone who ate gluten in front of me.

    You know, the longer I stay gluten-free, the easier it is. But the second I get really, really hungry and there's nothing available to me is the time that I would cheat.

    Now I've gotten really good about having foods with me. If I'm going out for the day, I take some homemade banana bread, cookies, potato chips, fruit, Larabars, so that whether I'm craving something sweet or having to watch someone eat something salty like french fries, I always have something available. That helps a lot.

    And being more savvy has helped, too. The other day my hubby and I took a surprise trip away from home. I can walk in a convenience store and grab some potato chips, a banana and something to drink and I'm OK. It ain't the healthiest, but it still is healthier than eating at McDonald's!

    Now that I can't have casein, I'm not craving pizza very much anymore at all. I just get so sick on it that it just isn't appealing anymore. But Amy's does make a very good rice pizza. Just add your own toppings because it only comes in cheese.

  4. I experienced that, and *thought* I was getting glutened all the time. I was drinking all Lactaid when I used milk at all and didn't know what was making me sick. By trial and error, I've figured out recently that it is the casein in milk I am reacting to, not lactose.

    I tried goat's milk for myself, because *some* can tolerage goat when they can't tolerate cow, but that didn't fly with me either.

    Try switching to Blue Diamond Almond Milk for now. It's *delicious*. I don't know that I'd drink a glass by itself, but I forgot it wasn't real milk on my cereal.

    Instead of butter you can use some margarine. Just make sure it's gluten and casein free. Fleishmann's *unsalted* is OK. There are some other brands that are fine, too. I got my spread from Wegmans so it is labeled gluten and dairy free.

    Also, be careful of *anything* that says non-dairy. If it has sodium caseinate and you can't have casein, then you're going to react to it. (That means no International Delight in the coffee, sadly.)

    You can also get gluten and dairy free chocolate. Some dark chocolates don't use milk fat.

    I will warn you that it's possible you may also be sensitive to soy. I think I might be, but it's going to take some time and further experimentation for me to find that out.

    Best of luck. But I'd say for now go off all dairy altogether.

  5. I second the idea in the last post ...

    For me, the problem was my symptoms were SO diverse. And to this day I'm convinced I receive the Dx only because I mentioned to a new doctor that my aunt is gluten intolerant and I wondered if I had it, too. When I go back to my primary for my annual checkup, I plan to do a good deal of education to him. (: (He's very, very, very nice, just obviously did not know a lot about the neurological symptoms gluten can cause.)

    In diabetes, it takes one blood test and you get the answer. Here, you could have a blood test, endoscopy and have it all come back OK and STILL not be able to tolerate gluten. So in their minds, it may not be real the way other medical conditions are real.

  6. I don't know if you are aware, but you can use a health flexible savings account to pay for the cost of gluten- and casein-free foods above the cost of regular foods, provided they are to treat a medical condition. I plan to do this next year, but it is a bit of a paperwork nightmare. Considering my grocery costs about doubled, though, it will be nice to get some of that back.

    You do need a doctor's note of medical necessity, however.

    Here's another downside. Also I am looking to get life insurance outside work for the first time because I am getting married and we are about to buy a house. My life insurance premium is about 40% higher than if I was not gluten intolerant. (I don't know if I'd even have to technically report that, but I'd rather not have them deny it down the road on a technicality like that.) I am not considered celiac, however. I chose not to gluten challenge and do an endoscopy.

  7. Thanksgiving is coming!

    It will be easy at my grandmother's house because my aunt, my brother and I all can't eat gluten and the family makes plenty of dishes we can eat and makes sure the turkey is safe.

    However, at my other half's family, it will be a little different. This is our first Thanksgiving together, so I feel a little weird making demands of his sister, who will be cooking. Would it just be easier to take my own food, or do you think asking her to cook the stuffing separate instead of inside the turkey is OK? She's super nice, but I get the impression that they sometimes think I overexaggerate about this stuff, especially about stuffing inside the turkey affecting meat on the outside.

    But isn't that weird to bring your own food to someone else's house?

    I do plan to bake my own pumpkin pie(s) and take it to both houses. Might bake some cookies, too. Probably also will bring my own sweet potatoes or mashed potatoes because I'm the only one casein-free, and I know they'll be made with butter.

    - Susie

  8. Sorry to post two topics so quickly, but I just found you guys and have tons of questions.

    I'm nearing the end of my 2nd week casein free, and feeling 1,000 times better. I wished I had known about the casein thing a long time ago -- not just eliminated lactose.

    Anyway, when I initially went off gluten, my pimples cleared up 95 percent after years of breakouts. (I'm 28.) But now that I'm casein-free, they are popping up everywhere. I have about 8 right now when typically I'd have maybe one.

    Anybody know what's going on with that? And no, it should not be hormonal right now.

    - Susie

  9. Hi all! I'm new around here. Anyhow, here's the short version ...

    Been gluten-free for about 9 months, but have still been having problems sporadically. I assumed I was getting glutened. I now believe that casein is behind it after switching to lactose-free products and still having problems.

    Now I have been trying to be casein-free, but it's also an adjustment. I'm actually feeling a LOT better, but noticed I broke out in some acne (which had cleared up 95% being gluten-free after suffering for years. I'm 28).

    But something is still getting to me. I'm wondering now if it's soy, or if I just haven't eliminated all casein sources yet. For example, I've been using Blue Diamond soy milk, which is delicious but I just read on here contains soy. And I've been eating Lindt 70% cocao chocolate, which does not have milk ingredients but may from contamination. So either one of those might be the culprit.

    *Is* there some sort of medical test that can tell if it's soy or casein? I'm going nuts here.