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  • April in KC

About pixiegirl

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    Cape Cod, MA

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  1. Thanks for the support everyone, I really needed it. I'm laying off the spinach and cabbage today, I hope that helps and I understand the 2 steps forward, one step back thing but darn, I was feeling so good. I do feel a bit better today and my belly is quiet so thats good. I actually had an early dinner at Outback Steak house and they seemed very aware of the gluten thing. So far I feel good.

    Again, thanks for the support and the ideas!

    Susan :unsure:

  2. I'm one of those in the gray area, so far all test negative but gluten-free diet really helped me for 4 weeks.... however... for some reason the runs have come back, not as bad as they were pre gluten-free but not good either. I know for sure I have not been glutened. I have only eaten at home and mostly just fresh foods.

    I've been eating a lot of spinach and cabbage (don't ask why, i'm not sure, just a yen I guess and making stir frys a lot, using La Choy soy sauce which every list says is gluten-free and the ingrediets appear to be). I also went to Whole Foods Market and bought a gluten-free pound cake, its made by a popular gluten-free company (can't think of the name right now) but I'm pretty sure that is really gluten-free.

    I'm not a huge milk drinker, I've always had Lactaid milk in my tea in the morning and thats it.

    Sigh, so why did I go down hill? What happened, I'm so disappointed right now, I've been so careful and I was feeling so good and like I had said in a previous post all my symptoms miraculously disappeared. Well now I'm more then halfway back to where I started. My belly is grumbling constantly again. Oh well, was looking for ideas and wanted to vent, I'm so upset.

    I received my entrolab stuff in the mail and will do it and send it in on monday but now I'm wondering if I need to do that full food allergy stuff with York. (going to go broke!)

    thanks for listening! Susan

  3. Because my cruise line is small (just 3 sailing ships) I had to deal with Holland America the parent company, but I found the contact info for them on my cruise lines web site, actually I e-mailed them first and then after e-mailing back and forth a few times I asked for a phone number and they called me and we seem to have worked it out.

    I'm sure on the carnival web site, they have info about allergies and special diets, so check there or send them an e-mail, they were very responsive to me.


  4. I don't want to start diet wars either because what I have learned over the years is that all our bodies are different and what works for me may not work for someone else, so I'm not saying that the diet I'm on it the best, the "right" one, or will even work for everyone. I've tried other diets and for me they either don't work or I can't stick to them, but this one I can... so I think with dieting... one has to try different things and see which work for them. My only advice is that over all to make a diet successful for years and years is that we have to sort of retrain ourselves, on good healthy food choices, portion sizes, etc. Thats why fad/starvation diets don't usually work for most people... they don't retrain how we eat, so you may lose weight on the watermelon diet but chances are you will gain it back down the line unless you eat watermelon every day of your life! :rolleyes:

    However, my boyfriend does the South Beach Diet and he has had great success with it, but when I read the book the first couple of weeks are low carb. I realize that after those first couple of weeks you get to add carbs again, but for people like me that literally get sick without some carbohydrates I can't even do the 2 weeks, I get dizzy, sick to my stomach, really ill.

    So again, there are a lot of great diets out there but I firmly believe that each person has to find the one that works well for them.

    Susan :D

  5. I thought I posted to this topic before but can't find my post so I will do it again. I'm mostly thin but I have to really watch my weight these past 5 years or so, or I start to gain and I don't know about all you people but I can't afford a new wardrobe so I can't really start gaining weight..... wow as you get older (at least for me) your metabolism changes...

    I love carbs... I have tried the Atkins, South Beach and without any carbs at all I feel terrible, I get crabby, brain symptoms, headache, I'm not kidding after 3 days on the Atkins I was lying on the couch moaning feeling like I was sick enough for the emergency room (my husband, who is now my ex husband, was begging me to eat some carbs, I finally did and got back to normal within hours). I'm sorry but I can see eating all that meat and thinking that is healthy.

    So my friend lost almost 40 lbs. on the Carb's Addict Diet and he has been on it in a modified way for 3 years. He now says he can't imagine eating any other way, he swore to me his carb cravings went away. So I bought the book (and instead of trying to post it here, there are a number of simple parts to the diet, let me say its out in paper back and I bought it at Barnes and Noble for under $6. - the full title is The Carbohydrates Addict Diet and Life span Program for people in their 40's, 50's and beyond... they have just the plain Carbohydrates Addicts Diet too I guess its for younger people but the diet is the exact same... the one I had has challanges in it you can try after you have been on the diet for a while).

    I went on the diet which is sort of a modified high protien diet, you don't have to weigh or measure anything, you just need to keep your protein portions and veggie portions in certain amounts, for example at breakfast you need to keep the protein and veggies each 1/2 your meal, you can eat as much as you want as long as the % is half of one and half of another (same at lunch btw), at dinner the proprotions are 1/3 protein, 1/3 low carbs veggies and 1/3 carbs of your choice.

    Because you get carbs every single day I didn't get that sick feeling like I did on other low carb diets, and its so easy to do... I'm eating so healthy now and yes I've lost weight and I'm keeping it off without trying. I really think this book is worth eating. My friend who has been on it for years now created his own maintenance phase.... he is on the diet sunday - thursday and on Friday and Saturday eats how he likes... he made up this maintenance phase because he was losing too much weight (if you can imagine such a thing!).

    Not only did I feel good, lose weight, sleep well, but I'm never hungry on it (it does allow snacks too but I've never had them). If really low carb diets don't work for you then you should try this one.

    Susan :D

  6. On the east coast we have Legal Seafood restaurants and I know they have one in Palm Beach, Florida too.

    I was in one today and I asked if they had a gluten free menu and she said not now but in about 3 weeks we will, we've all been trained about it and are very aware of gluten problems and allergy issues. She told me to pick something I wanted to eat and she would discuss it with the chef. I choose a tuna lunch with veggies and it said it would be served on pilaf... (I know I can't eat pilaf but I wanted to see if they knew.

    Well she came out and told me that I could get it on wild rice or jasmine rice but that the pilaf had gluten in it. She also told me they use seperate utensils to make and and such. I'm going to guess they did it exactly right because I ate it hours ago and I feel wonderful.


  7. To recap my story, 8 years of digestive problems, supposedly have IBS, chronic diarrhea. I go to my doctor and get tested for celiac 3 weeks ago, right after I have the test I start to eat totally gluten free and in less then a week every single symptom I've had is magically gone.

    Then the doctor calls me up and tells me all my blood work is totally normal (I had lots done) and that the tests for celiac are all negative. I asked that they send the test results to me and I got them today. I'd like to know if anyone can help me understand them.

    The tests ordered were: endomysial iga, gliadin abs, reticulin abs.

    this is what the results say:

    endomysial iga: negative

    gliadin abs, gliadin igg ab: 2.5 (negative is less then 25)

    gliadin iga ab: 5.1 (negative is less then 25)

    reticulin abs: negative (at 1:20 dilution)

    So it seems like every test I had was very very negative, right? How does one explain the change I had by taking gluten out of my diet? How do I find out if I can eat gluten or not?

    Susan :(

  8. I've only been gluten free for 3 weeks but I've lost 4 lbs and my stomach is so flat because I'm not bloated or gassy.

    As with anything it depends on your food choices.. if you eat potato chips and candy all day you'll gain weight. In my case I'm eating less processed foods and its working. I feel so much healthier. Chicken, fish, pork, occasional steak, lots of veggies, fruit, I have made some gluten-free Pantry Spice cake but I've only been having a small slice once a day as a treat. So far so good.

    I think once you look into it you'll see you can diet and be gluten-free.

    Susan :D

  9. Hmmmm, well the ingredients in my A1 Sauce (garlic flavor) are:

    (an * by the ones I'm not sure are gluten-free)

    tomato puree



    corn syrup


    raisin paste

    roasted garlic puree


    orange puree

    dried garlic

    dried onions

    *carmel color

    *natural flavor



    It has no warning for gluten, or wheat ingredients but I'm just not sure.


  10. Since I'm new at this (just over 3 weeks) I still just forget and eat stuff, darn! I had Lea and Perrins Worchester Sauce and I'm not sure if its ok, it looks ok but what do I know.

    I didn't eat the A1 Sauce but I do love the stuff and would like to know if I can use it in the future. I went to the Kraft web site and they don't list any real nutritional information about it. Shame on them!

    Does anyone know?

    Susan :blink:

  11. I'm writing to myself on this topic, but I wanted to be fair about it incase in the future someone needs this info.

    Yesterday Holland America called us, they are the parent company for our Windstar Cruise. We have 2 issues, my gluten problem and my daughter has a life threatening peanut and tree nut allergy.

    They were very nice on the phone and I felt like they really wanted to help. She did say that they won't carry any gluten free breads for me, or pastas, I'm going a really small ship and they just "can't do that. I might bring a loaf of my own bread for breakfast toast! She said they hate to promise everything will be perfect because there is only one kitchen on board and there is a small issue of cross contamination (and I guess there is everywhere we go) but she has notified the boat, the ships doctor (for my daughter) and the chef. She said when we arrive on the boat to go and talk with the dining room manager and the chef, they know we are coming and that they will do everything they can to accomodate us. She said the staff does deal with food allergies all the time and are very aware of the issues of seperate utensils and cross contamination.

    So after talking with them I felt much better. I did however buy a supplemental medical insurance policy that includes airlifting my daughter off the boat if we need too. I did this on our first cruise too so its a peace of mind thing.

    Thanks hope this helps someone.

    Susan :D

  12. Its getting harder and harder to take a vacation. The cruise line just e-mailed me and told me that they can't accomodate my daughters life threatening peanut allergy now. The cruise line is Windstar, which is owned by the same company as Holland America and Carnival. Its a luxury cruise line and they can't help me with gluten or peanuts. Sigh. Now I'm not sure what to do, they said they only have one kitchen on the boat and there could be cross contamination. We have been on a number of cruises and they all had one kitchen too, as a matter of fact every hotel we stay at and every restaurant we eat in only has one kitchen.

    Life can get so complicated, I'm so torn on what to do.

    Susan :unsure:

  13. Hi Welcome and I'm new too! I think the adjustment to having celiac disease is made easier or more difficult depending on how you ate before. For me and I'm so new at this I only have a few weeks under my belt, but eating at home is not so difficult. I went and downloaded off of web sites lists of gluten-free food that can be found in my regular store and then I went to the web sites of foods I like, like Hood Milk, Newman's Own and many of them list foods they make that are gluten free. At home we have always eaten very little processed or packaged food so that made it a bit easier for me, I think.

    I was big on eating out and I'm disappointed that I won't be doing that as much. I posted in another part of this forum that I'm taking a cruise at Christmas and we notified the Cruise line that I need a gluten free diet and they said they can't do gluten free diets, its Windstar Cruises fyi. However they think there is enough food that I can eat there that is gluten-free. I'm doubting that but I'm still taking the cruise.

    So I think you may find that after doing some research eating at home is pretty easy.

    Any how, again welcome and I'm sure you will figure it out and it will become second nature.


  14. Oh thank you so much for that info... I'm trying so hard to keep gluten free, its not so easy. I have been almost gluten free for 3 weeks, I was out shopping with my daughter at our local mall and needed food, so we went to McDonalds and I got a salad with grilled chicken, the dressing was Newman's Own and I knew that was gluten free. So I ate it, within an hour my stomach was rumbling and I felt terrible. I went to the McDonalds web site and sure enough, even though the salad doesn't have crutons it says it contains wheat... in a salad! So I'm getting the message just after 3 weeks how hard it is to eat outside your home.

    The cruise really has me worried, we have notified the cruise line and I'm hoping it goes well. This is my 4th cruise (I just found out I was gluten sensitive so I didn't have this issue with the other cruises) and when I took my first cruise it was a big family thing and I "knew" it was the sort of vacation I'd never take again, I was not the cruising type. Like I said that was a few cruises ago! Its not my favorite vacation but its a great way to unwind and relax. this one is on a far smaller boat then last year. 3000 people vs 250. Should be fun!

    Thanks again, susan

  15. I just wanted to say hi. I'm sure you all have stories to tell in getting diagnosed and here is mine. I've had stomach problems and diarrhea for 8 years. I've seen my doctor a few times for them and first it was a lactose intolerance (which I'm not sure I have) and then he finally decided I have ibs. Two weeks ago he ran some blood tests for celiac and they came back "normal" and he said I don't have it. However..... when he mentioned that we were testing for celiac disease I went on the internet and read about it and immediately went gluten-free.

    By the time the tests came back all my symptoms were gone, no diarrhea, no noisy stomach, and I'm eating milk products with no symptoms (which is why I don't think I'm lactose intolerant). When I told my doctor this he said, go back on gluten products it has nothing to do with it. Well, two days ago I mistakenly ate a little bit of gluten and my belly was all upset again (along with other symptoms).

    I'm going to get some further testing at that Entrolab in Tx. and see what they can tell me but for now this is where I stand, my Dr. won't even give me a referral to another doctor (i'm in an HMO and can't see anyone with his referral) as he said based on this one blood test, that I'm fine and that its in my head. (wrong end!)

    Its frustrating but I know that the gluten is not working for me.

    I'm a single mom on Cape Cod (not a lot of doctors) and I just thought I'd say hi and that I look forward to learning a lot more about this.


  16. Hi I just wanted to say that I do the carb. Addict's diet too. I've been on it for 2 weeks and have lost 5 pounds. I went on it because a friend of mine lost 35 pounds on it and has been on it for the better part of 3 years. He doesn't crave carbs at all now.

    And for me the same thing has happened, I do eat carbs at my reward meal but I don't crave them all day long. So far I really like it.


  17. Hi I'm new here to (I'll introduce myself soon) and I'm not even officially diagnosed as celiac disease but I'm certainly really gluten sensitive. Anyhow, this is all new to me but... I wouldn't ask my boyfriend to be gluten-free, if he decided to go that way fine but I can't imagine why he would.

    I personally need his emotional support and he gives me that in spades but I don't need him to do what I do. Just like if I was diabetic he wouldn't be taking insulin because I do. We both love to eat and breads were a favorite of ours I'd never want him to give them up. I have a disease and he doesn't need to pretend to have it too, it's no fun having it. Again I'm not saying anything about those of you that have spouses that also gave up gluten, that was there choice. I'm really big on running my own life and not running the lives of others.

    My daughter has a life threatening peanut nut and tree nut allergy and I still eat peanut butter (but only on toast when she is at school, but its in the house). She is 13 and I can't stress how careful we are. When she was 1 she had her initial reaction to peanuts and since then we have never had a single reaction when she was with me or my ex husband, not one, so again we are careful. She has had them at school (a whole nother issue all together!) but that seems behind us now as well.

    I guess each person and each family does what works best for them.

    Best, susan :)

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