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About Offthegrid

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  1. What kind of doctor is that? He can't help? :angry::angry::angry: What are we paying these people for?

    *deep breath*

    Well, I don't have kids. But here are some thoughts:

    1. She's getting cross-contamination from somewhere. Possible sources are bakeware, cutting boards, dishes, etc. Maybe the family pet is giving her kisses after eaten its food (which has gluten). Maybe somebody is giving her something when she's away from home and telling her it's OK and it's not. If your household is not gluten-free, cross-contamination could be happening.

    2. There's gluten in a food you are regularly eating but you don't realize it. It's a sneaky little devil.

    3. She's cheating.

    4. Do you take her out to eat anywhere? Maybe she's still getting gluten there, even if they are supposedly "gluten-free" menus it's very, very possible to be cross-contaminated when going out to eat.

    Can you think of anywhere else she might be picking up gluten?

  2. I personally like when people say that a gluten-free diet would be hard. And if they thought that was hard, they could never imagine a gluten-free, dairy-free, soy-free and potato-free diet.

    What I hate most is if people say it would be easy to eat gluten-free. That actually infuriates me, and I have challenged one person to eat totally gluten-free for three weeks to see just how difficult it would be. She has not taken me up on that challenge. (Gee, I wonder why.)

    Anyway, back to topic of relatives ...

    I *wish* my aunt would have brought up that this was a genetic illness 10 years ago, but I'm not sure I would have listened at that time. When you have digestive problems for so long, you perceive them as "normal."

    All you can do is tell them that you have it, that it's genetic and if they have some of the sympoms (list quite a few or print them out) that they should try going off gluten for 3 weeks to see if they feel better.

    If they don't listen, then that's their choice and there is nothing you can do about it.

  3. I have some family members in denial about gluten, so although I can't possibly know how difficult this is for you, I do know how frustrating it is to watch someone poisoning themselves with food.

    I know for me, especially in the beginning, it was hard to stop eating gluten once I started. When I was first diagnosed, I'd get accidentally glutened, and then I figured because I felt bad it didn't matter if I ate pizza or Burger King or whatever. But then once I cheated on purpose, it was very difficult to go back to being gluten-free.

    Being a med student and having this has got to be incredibly, incredibly difficult. Not being able to grab something quick from a vending machine or from a cafeteria at school must be so hard. She has to know on some level that she's making herself sick, but she possibly just can't bring herself to stop. Eventually she will get so sick that she'll have to. And that's when she'll really need you to guide her in this difficult diet.

    Sorry you are having to go through this!!! :(

  4. I love 14 pounds very quickly (a week and a half?) when I initially went gluten-free. I was somewhere around 240 pounds at the time? Not exactly sure.

    When I eliminated casein (dairy), I had another fairly rapid drop of 10 pounds, but gained 5 of those back. Eliminating soy and I had another 5 pound loss very quickly. When I cut out potatoes, I dropped rapidly again.

    I'm now at the lowest weight I've ever been since junior high school, and am very happy. I've always been overweight (my highest weight ever was 270), so this is great.

    I'm not hungry all the time, and actually feel satisfied by my food instead of before when I would eat and eat and eat and never be full.

    It's a good thing. :D

  5. Good article to link to.

    You can use pretax dollars through a flexible spending account to be reimbursed for the DIFFERENCE in cost between regular food and gluten-free foods. You do need a note of medical necessity from a doctor. I signed up for a flexible spending account next year and plan to do this primarily with the flours and maybe pasta since I don't buy a lot of the prepackaged gluten-free foods anymore. 1 pound of rice flour or tapioca starch, whatever, costs a lot more than a pound of regular flour. :)

    It's still your money that you're being reimbursed with, but you are saving whatever your tax rate is by paying with pretax dollars. So it's like a 25% (or more) discount.

  6. If you are eating only these foods and still getting sick, then you know you are intolerant to at least one of them. My first guess would be soy in the mayo. There *is* soy-free mayo. It's called Spectrum. It's quite expensive, however.

    Second guess would be the eggs.

    It is extremely frustrating to have so many intolerances. Right now I get sick if I eat soy, dairy (casein) or potatoes (and gluten of course). But there are other days when I have more minor symptoms and I don't know what I ate to trigger it. I often find that there was soy in something that I ate that I thought was safe.

    Watch milk substitutes. Almond milk can have soy in it. I think rice milk is quite good, but be aware that Blue Diamond may have trace amounts of gluten in it.

  7. You can get gluten-free pasta. Get the brown rice, not corn.

    Use rice and potatoes instead of bread. You'll find the premade gluten-free breads don't taste good, but if you're going to resort to them, try the almond.

    Pamela's pancake mix is the best, but does have dairy, so if you find she can't have dairy either I recommend making your own from scratch. There are some recipes here. You can substitute rice milk with lemon for buttermilk.

    Corn tortillas are good if you can heat them up. They don't work so well cold, so I don't use them for lunch.

    You can use lettuce as a hamburger bun. I don't mind eating hamburgers without the bun or cheese now. I do use a lot of ketchup and mustard.

    Seasoning, seasoning, seasoning. Don't be afraid of McCormick's. The company will label any gluten on the label. Kraft is also very good. Be careful of some other brands because they will hide gluten.

    Make some gluten-free treats. Here is the easiest gluten-free cookie recipe in the world. Mix 1 cup peanut butter (natural if you're going to start avoiding soy), 1 cup sugar, 1 tsp. vanilla and 1 egg with a wooden spoon. Roll into balls and bake at 375 for about 12 minutes. If you can eat dairy, you can add a Hershey's Kiss before baking. If not, you can add confectioner's sugar on top. Yummy.

    Lots of fruit! Yummy. Bake some apples with brown sugar and cinnamon for an easy dessert.

    Veggies are gluten-free but watch the sauces.

    There are soooo many possibilities, and they don't need to be expensive. Just go back to the basics.

  8. I think it would be important to know all the symptoms. I didn't mention GI problems until they were so bad I thought I had food poisoning. It is embarrassing! And when you have this your whole life, you don't necessarily realize that it's not "normal."

    The symtom I had that eventually lead to the dx was tingling/numbness/burning in my arms and legs. And I had a host of diagnostic tests looking for something. But if a patient is talking about "not feeling right in the head," being tired all the time, insomnia, etc., then a doctor should ask about bowel movements. If a doctor asks, then patient might be more likely to discuss it.

    Oh, and that you don't have to be underweight to have celiac! I've been overweight my whole life, as have my aunt and brother who also can't have gluten.

    Lastly, if they have a dx of gluten issues, then the doctor should advise the patient to have other family members tested. I believe my grandmother and mother both have this, but they have not been tested.

  9. Morning all. Got my Xmas shopping done, no problem. I have a sinking suspicion hubby is trying to get me a puppy for Xmas. I hope he doesn't b/c I'd like to pick it out, but I'd also love a puppy either way. (I bought a puppy two years ago who ended up having fatal kidney problems. He died at 10 months old.)

    I forgot to do the spit test, so I will have to do that another day.

    Hey, I was able to put on some Gap jeans that an ex-bf's mother had given me. I couldn't even get them over my thighs before, so that is major! I never had anything from Gap. I think I'll probably wear them all weekend. ha ha.

    Hope everyone else is well and behaving. Or, at least is well.

    Donna, I know floaters are a symptom of Lyme, but I believe they are also a side effect. I know I took Ambien before and didn't fall asleep and saw spots.

  10. I told Mom how to do a simple, at-home Candida spit test. That is what I've read too- healthy saliva just floats at the top. If it floats, but thick strings drag down, that also indicates Candida. Also, if the water turns cloudy, or speckly.

    *Looking feverishly through thread* I haven't heard that! Are you spitting in a glass of water?

    Well, I'm off to start and finish my Xmas shopping. Wish me luck!

  11. For those craving KFC chicken ... try McCormick's Montreal Chicken seasoning. It's delicious! We put a little olive oil in a glass pan, then sprinkle seasoning (we like a lot). Then put down the chicken. Then rub a bit of olive oil and top and add more seasoning. Cover with aluminum foil Bake for 30 minutes at 375 or until chicken reaches proper temperature. It is SO YUMMY! Juicy and well-seasoned.

    In other digestive news ...

    My mother-in-law came over for dinner last night and brought me gluten-free "wild and brown rice." It looked good, but I thought, "uh-oh -- too much fiber."

    She says it's good, and it's "so much healthier than plain white rice." I thought, yeah, if you can digest stuff.

    But I thanked her very much, cooked some up, and it WAS delicious. But, sadly, two episodes and counting of D later, I know it was too much. It's kind of her to bring it and it wasn't cheap, but I just wish people would understand that simple is better.

    Is it common to be able to digest white rice but not brown?

  12. I read that Lyme article, too. Wow. Just wow. But still there are some major symptoms I don't have, like joint pain. But so many others fit. The horrible balance. Horrible sense of direction. The occassional, unexplained dizziness. Headaches. Light sensitivity. Digestive problems. Numbness/tingling in the hands. Recent hand numbness that sounded like carpal tunnel (I immediately switched my mouse to the other hand and that's cleared it up). Twitching of my eyebrows. And even occassional heart palpatations. My body temperature is low, and my feet are always cold. Never had a rash, but I remember a few tick bites and we grew up camping in a camper virtually every weekend.

    Do you think I should have my regular primary doc test for lyme, and then look for a specialist? I think neurologists, etc., in this area won't see you without a diagnosis.

    Also if they put you on long-term antibiotics, then that means the birth control pill won't work. I don't think that would go over too well.

  13. Jin,

    No, sadly, we're probably not getting a tree this year. We redid the office first, so stored virtually every box that didn't go upstairs into the living room. Heck, we can't even watch TV yet (although we do have cable) and sit down at the same time. We do have a miniature tree, though. We bought lights, but they aren't up either. Maybe on Sunday?

    In fact, I'm getting my first chance to go Xmas shopping today because every other night I was needed to help around the house. Fortunately, I've had plenty of time to think about exactly what to get people (don't have too many to shop for).

    Oh, my weight loss got me thinking: I don't know where to shop for clothes anymore! I used to buy virtually everything at Lane Bryant, but now I can't shop there because everything is too big. I know the size 14s there are bigger than size 14s in other stores, though. So it was frustrating at 205 pounds because I was too small for Lane Bryant, but too big for anywhere else. Maybe now I can fit into a regular store's clothes. Anybody have any suggestions?

  14. I had my B levels checked, as well as was checked for diabetes (and had a sleep study, and a stress test, etc), and none was the cause behind my tingling/burning. I believe in my case it was a type of restless legs, although it typically affected my arms much more than my legs (but sometimes occurred simultaneously in the left leg and right arm, for example, making it impossible for me to sleep).

    It also was severely exaccerbated by alcohol. I can now drink gluten-free alcohol without these syptoms, but they will come back if I have a drink several nights in a row. But, like I said, if I am strictly gluten- and casein-free, I don't have the tingling/numbness/burning any more, so that to me is the biggest incentive to be careful.

  15. Hi everyone! We're getting settled into the new house and loving it, although I can't wait until all the boxes are gone.

    I have to brag a little bit.

    The background: Been overweight my whole life. Hit 253 pounds last September (before diagnosis), although my highest weight ever was 270. I can't EVER remember being under 190 pounds, and in college the lowest weight I got to was 192.

    When we moved, I weighed 205 pounds.

    Since the move, I've lost another 10 pounds -- the scale said 196 today!!!!!!!! :o:D:D:D

    I've been so much more physically active since the move because of all the work around the house, and eliminating potatoes really seems to be helping.

    I'm really happy and can actually *see* a day when the scale does say 189. You have no idea how big a deal it would be for me to be 189. Plus, the size 14 pants I wear to work, which were once waaaay too tight, are now too loose, and there are all these clothes that had been packed in storage because they were too small that now I can wear. It is so exciting!

  16. I don't know the exact answer to your question, but I will tell you I had the paresthesia symptoms for 6 months before diagnosis. Test after test couldn't find the answer. Finally, I switched doctors and mentioned that my aunt can't eat gluten and could I have that, too.

    The symptoms greatly diminished when I went off gluten, but did not completely disappear until I eliminated casein (dairy).

    If you have other allergies, too, as your tests might indicate, I would try abstaining from gluten and them, too. I would not be surprised if you see significant improvement in the first month and even more improvement within 3 months.

    Just to warn you, I also had to eliminate soy and potatoes. And even still sometimes I get D even when I'm careful, because I'm finding it difficult to avoid so many foods at once (just as at first I found it difficult to avoid all gluten). Another warning, when you feel you are ready to go off those medications, take it nice and slow to avoid withdrawal.

    Have hope. You now know you can't eat gluten, and you're on the road to feeling better.

  17. I have not seen a soy-free tomato pasta sauce at a regular grocery store here (someone please correct me if I'm wrong). You can make your own tomato sauce, though, from diced tomatoes, tomato paste, etc.

    I personally have be putting a little bit of olive oil on my rice pasta (not too much) and then some type of meat and herbs. I also have sauteed veggies in olive oil and added to the pasta.

    Other easy meals are cooking your own meat and then rice or potatoes on the side and some veggies. gluten-free does not have to be complicated.