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cap6 last won the day on July 1 2019

cap6 had the most liked content!


About cap6

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    Diagnosed 3/3/2010. Well & loving life with partner of 20 years and 4 furkids.
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  1. When you are still healing different foods/drinks can cause gluten type reactions.  If you eat something and still get sick it isn't that you were "glutened" it may just be your body saying that it can't handle the ingredients the food contains.  You may tolerate rice today and two months from now no longer be able to.  Our body changes and heals at such different paces. 

  2. Education as others have said.  Sigh!  I get the "Well, it won't kill you like a peanut allergy will".  Well, probably not but do you want to hold my head while I puke and pass out for hours???   A co-worker told me it was just a diet thing and I would be fine.  A good friend rolled her eyes like I was making things up.   Takes time  for other around us to get it, and to some extent they never will unless they live it!  

    My daughter (who really needs to be g.f but we won't go there) tried for two weeks.  She called me crying and said "Mom.  How do you live like this".  At this point in my life it's pretty easy.  Four years ago I would have been crying right along side of her. 

  3. Since we travel a lot I use the app on my phone Find Me Gluten Free which is really pretty good.  I, too. usually order last and say something like "I'm going to be your problem child" and stress that I have food allergies.  I ask how they prepare the food and if they come back with stating they have special preps then I know they have been trained and we are going to be ok.  If their eyes glaze over..... then we know it's not going to work!


    I tend to stick with places that state they have a gluten free menu as I have found that if they have gone the length of printing a special menu you're off on a safer track right there. 


    I try to go out at less busy times of the day, especially if it's a place I am unfamiliar with.  One of my best experiences was at  Ruby's Diner, a hamburger place.  They stated they had g.f but the thought of all those hamburger buns had me pretty nervous.  I asked the server about their g.f. options and she went to get the manager.  He came over and before I could ask anything he stated that he had instructed the cook to scrub the grill for me.  Wow!  I was impressed.  I ordered.  I must confess that I didn't feel well that afternoon but it was not a glutened sick, it was a you-ate-too-much-you-dummy kind of not feel good!   I'm not used to (g.f.) buns and fries any more but darn it was good.   

  4. Been reading all of the comments and this is such a perplexing topic.  What works for one person doesn't for another.  Plus, just my thought, that what may work in 6 months of healing may not work at two years of healing.   Bottom line is finding the right combo (cocktail) that work for you. 


    I would be very careful at eating much in the way of processed gluten free foods (breads, pasta etc) as they are stuffed with so many ingredients, ingredients that can cause adverse effects .  Just because something is safe for us doesn't mean it is good for us. 


    On my soap box here, but....  I have been on the Paleo diet for the past almost year, eating 100% grain free and mostly all organic foods.  No processed foods.  The changes in how I feel, the ability to "preform" on my own the majority of the time make it worth it.  Going from my nightly Smooth Move tea to every three or four nights   says that what I am doing if right. 


    Just some thoughts............ 

  5. I have posted on this before as it has been the story of my life and even at 4+ years post diagnosis is still a problem if not very careful.

    I have tried every suggestion given and finally came up with my own cocktail.

    Water, water and more water.  Veggies at every meal.  And I mean lots of them so that your plate is 3/4 veggie and 1/4 protien, walking.

    That's the natural stuff. 

    I use Smooth Move herbal tea and that "breaks the dam" every time.  I started out using the tea nightly and did so for a year.  After a year I was feeling a little healthier and so then I tried every other night, and things worked!  After 4 years I now take the tea every three to four nights and can stay pretty regular that way. 

    The other thing I learned is to visit ythe bathroom at the same time every day.  Retrain yourself just like we trained our babies.  Same time every day, whether you go or not give it a try. (TMI right?  lol)  We have been used to no results for so many years that our body has forgotten how to be regular.  We have to retrain.

    And, as stated above, Miralax is also quite safe to use.  If I am ever so bad I try the tea and one shot of Miralax and that works. 

    My doctor told me once that it was better to get things moving that to risk the results of a complete blockage.  Get things working again and then work on healthier ways to do it.

    Just a thought

  6. I haven't posted in quite sometime, but...with 4+ years of experience feel the need to respond.


    First, it's your home and you have the right to expect No gluten in your home if that's what makes you feel comfortable, and that's the way my home is.  I am the only celiac in our home but it just makes it easier. 


    When we have a party I serve only g.free.  While I am pretty much only organic & paleo myself I don't go that far with a party (too costly) but I will not have gluten in my home.  I do things like a potato or taco bar, chicken on the barbie or just snacks.  If someone want to bring something then I suggest something like a veggie plate (which I personaly don't eat especially if it came from a gluten kitchen) or chips or m&m's, ice cream, an extra bottle of wine,  something that I know is safe.  I just tell them g.f. only please.  At this point, after so many years, they all know and respect it. 


    If someone blunders and happens to bring a gluten item I try to not make them feel uncomfortable.  I just take it, set it aside and quietly thank them but explain it's gluten and would they mind terribly if we didn't serve it.  With an extra hug and thanks a difficult situation is dealt with.    And I agree with CathyO, a true friend understands.  Our friends don't want to see me sick any more than I want me siclk! 


    I see nothing wrong with saying No gluten.  Most people can sit down to a g.f. meal and never know that it's g.f.! 


    And, just a moment on my soap box.....

    We have to educate our family and friends.  Yes, many are resistent and don't want to listen, but friends that care and love you want to learn.  Many many people don't know what gluten is other than pasta or bread.  They are shocked to discover that it is in so many food items.  They don't get that the innocent dip they brought is deadly to us.  It may take several parties/events for family & friends to get the picture, but sooner or later they will.   Our friends now call ahead to ask if a certain item is ok to bring.  They know if it is a homemade item it is not ok (cross-contamination).   
    On the other hand I have to be willing to be respectful of thier wishes when I am at their house.  They serve gluten.  I bring my own little dishes of food, admire what they have prepared, don't assist with any kitchen clean-up (yeah!  lol) , if anyone new at the party comments I mention that food allergies (allergies cause people understand that word) suck and we all move on.

    I think so much is a learning curve.  We do things in the beginning, find they don't work, change and then change again till it fits.


    And thank you for letting me stand on the box for a bit!

    And on that happoy note I will have a glass of g.f. wine (yes, I know it all is) and toast to happier and easier family/friend get to-gethjer!

  7. I was 58 when diagnosed so can totally relate!   I agree with some variety in your diet.  Ensure is fine but there are so many other ingredients that just aren't good for you.  I have an egg every morning and you need lots of fresh veggie and protien.

    Also... I have that devastating exhaustion also and it turns out that I have chronic anemia and must take iron supps alsong with b12 shots.  So do get your vit levels checks as that may be what is helping with your tiredness.   (I was sleeping 12 hours a night along with a 2 or 3 hour nap.  Life is too short for so much sleep time!)

  8. Paleo is an excellent diet to follow.  My fav book is Practical Paleo by Diane Sanfilippo.  I started out a no cook (a serious no-cook!) and her easy to follow, simple to use recipes are great.  Plus she has some simple easy to follow 30 meal plans. 


    When you replace processed gluten  foods with processed gluten free foods you will probably have trouble because of all of the ingredients that are needed to create that food.  Eating simple foods is the best way to heal.  Roast some veggies and a piece of chicken and you are off! 


    A note ~ pop corn is very very hard to digest especially if you are still healing.  It was a year before I could eat it.  In the beginning after eating a handful I felt like I had been glutened.  So keep in mind that it isn't just the gluten you have to watch for but all of those ingredients in processed foods.


    Two weeks isn't very long and although you are young and your body will heal fairly quickly, it takes time. 

    Sounds like you are on the right track.  I would give it time.  Watch your foods, maybe make a food diary so you can track what food you react to as you may have some other hidden intolerances as well.   As long as you keep feeling better overall, aside from some little glitches, I would say keep up the good work!

  9. I am probably in the minority as I really dislike Lara Bars.  I find the sugar content high and the protein count low. I eat one and it doesn nothing for me.   I try hard not to eat processed foods but every once in awhile one gets caught and needs something like Now!  I usually have a Think Thin bar in my purse.  The sugar is an ok level and protein is among the higher for a protein bar.   

  10. I have used the product for about four years with no problem.  But, that said, what works for one may not work for another.  It may not be gluten but one of the other ingredients in it  that is causing you a problem.  I know others that have had good results (no pun intended!) from Miralax which is quite safe.  A friend's celiac teenager has used it for a long time with no problem.    In an effort to use something very natural I tried the suggestion of 1/2 cup of warm organic apple cider vinegar with 2 T of organic raw honey.  It worked great  but I couldn't force myself to drink it ever again.  ugh!  lol

  11. Been there with friend's that feel uncomfortable with me not eating. Or feel sorry for me.  I don't there s any one  answer.   Sometime (If I know the place and feel comfortable) I'll order from a gluten free menu, other times I will bring my own meal or sometimes just a snack.  Some chips or something.  That way my hand is going to my mouth like everyone else. :P