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sandsurfgirl

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by sandsurfgirl

  1. sandsurfgirl
    The medical establishment has brainwashed everyone to think they must have an endoscopy. They say it's the gold standard yet the only gold I see out of it is the gold lining the doctor's pockets. I think they should only do an endoscopy if your blood tests are negative and they think you might have celiac. But if you get positive blood tests like I did...
  2. sandsurfgirl
    Wow, so the docs had no answers for you? Isn't that just typical? Just like with celiac. They shrug their shoulders and we have to be our own physicians. Glad the supplement is helping.
  3. sandsurfgirl
    Your post made me laugh. Alright then! Like a kid who was told not to eat cookies before dinner. LOL Stop bargaining. There are plenty of chocolates that do not have any malt or gluten ingredients in them. Eat those. Let the Lindt and Mars Bars go. I'm not sure how old you are, but those of who are in our 40's or older at diagnosis... we don't bargain...
  4. sandsurfgirl
    I understand where you're coming from. You're so frustrated with him and his treatment of you. It would be nice if he would learn something from this experience, but if you are snarky to him he won't learn anything. It will just keep the negativity in your marriage going. Somebody has to step up and be positive and affect a positive change between you....
  5. sandsurfgirl
    If you have only been gluten free a short time you need to give it more time. I was very sick at diagnosis and it took me a full 6 months to get better. Things improved right away but healing was slow. You may be getting glutened and not know it. Make sure you have thrown out all plastic and wooden cooking utensils. You can't get the gluten out of them...
  6. sandsurfgirl
    If it has malt you're going to react. It may be a small amount of malt so maybe you won't react as bad. That also depends on how sensitive you are. Experimenting with gluten isn't a wise choice to make. It's autoimmune, so every time you do that, your intestine gets damaged and so does some other part of your body. It's not worth it.
  7. sandsurfgirl
    That's totally normal. Once you go gluten free you get far more sensitive to gluten, or maybe you just notice it more because you were sick all the time before. At any rate, it happens to most of us. A few crumbs and I'm sick as a dog.
  8. sandsurfgirl
    The tests aren't that accurate, so lots of people are diagnosed by dietary response. Don't let that hang you up. Gluten doesn't make people sick if they don't have celiac. Or gluten intolerance but in my opinion gluten intolerance is celiac too, maybe just not full blown and the tests aren't adequate enough to find it. How long have you been gluten free...
  9. sandsurfgirl
    Wow that is terrible! How can a drug company even use gluten in their products? That is so wrong. You shouldn't have to check every time you pick up your meds. Wow.
  10. sandsurfgirl
    Well I was being all understanding of him until I read this post. Saying he doesn't buy into the gluten crap is just being an ignorant ass. He needs an education. Print out explanations about this and make him read them. He needs to be bored to death with facts because his position is completely ignorant. I use Gluten Free Pantry Basic Sandwich bread mix...
  11. sandsurfgirl
    Oh my heart breaks for you. I understand. I so understand. How many tears I cried. I'm Italian and I had to give up regular pasta! The whole cultural thing of getting together for spaghetti or lasagna. I'm such a foodie too. Loved buffets and picnics and eating out. I'm not sure how sick you were at diagnosis. I was deathly ill, so by the time I got diagnosed...
  12. sandsurfgirl
    Ditto that! It does get way easier. Now it's just normal life for us. I don't even think twice about it most of the time.
  13. sandsurfgirl
    These ones just sound like regular music. I don't hear any weird sounds on them although I read that some have like a static sound in the background but the ones I have don't have that sound. I wish I understood the science behind it, but apparently it's been researched a lot, especially with ADHD, autism, etc. One of the things with having Cushings now...
  14. sandsurfgirl
    Hey! Good to see you! I was actually doing very well. Busy as can be with the kids. I wrote a couple of novels I've been shopping around. Easier to write without the brain fog. I've been meaning to come on and support newbies and then I've been too busy to do it. But now I'm laying low and resting a lot again. Back to the starting point I guess.
  15. sandsurfgirl
    LOL! There are some foods I can't eat because they remind me of being sick.
  16. sandsurfgirl
    You must push for extensive Cushings testing. The pituitary MRI and the adrenal MRI too. Those tumors can be tiny. They need to do multiple cortisol tests to see is there is a pattern of high cortisol. My doc had me do four 24 hour urine collections, four 11 pm saliva tests, four 10 hour urines from 11 pm to 8 am and blood tests. Cushings is hard to diagnose...
  17. sandsurfgirl
    Okay this is gross, but I'm gonna suggest it anyways. I was served gluten cake instead of a gluten free brownie on my birthday at Outback last year. Ate half a piece of cake after the waiter assured me had triple checked to be certain it was the gluten free dessert. As soon as I realized, I ran to the bathroom and forced myself to throw it all up. I know...
  18. sandsurfgirl
    I would definitely go to the doctor and have your eyes checked. Maybe they even need to do a CT scan or something to rule out anything bad. I wouldn't let that one go or think it's just celiac related. It's better to just be certain.
  19. sandsurfgirl
    I also bought little ice packs that are about 5 x7 inches maybe. If I don't want to drag my whole purse/cooler thingy along I will make a sandwich on gluten free bread and wrap it in foil. Then I place the foil wrapped sandwich and the ice pack in another larger piece of foil and wrap them together. I can just drop that in my bag and the sandwich stays cool...
  20. sandsurfgirl
    You are blessed that you found out before you got sick. Some of us have been sick for years and years and for some it's too late when we get diagnosed. Our bodies sometimes never completely heal, although we are much better than we were on gluten. When I bring stuff to a party for my 7 year old celiac boy or for me, I keep it separate from everyone else...
  21. sandsurfgirl
    Keep a gluten free pizza in the freezer for you and let him pick up pizza for himself. I use the Gluten Free Pantry French bread and pizza mix for crust. I always keep shredded mozzarella in the freezer (yes it does freeze well) and jars of sauce in the cupboard so I can throw a pizza together at anytime. I also keep pepperoni in the freezer too. My...
  22. sandsurfgirl
    Wow that's crazy. Was it CA or Florida? I'm in CA. I did eat the gluten free at Sea World and I didn't get sick, but the manager told me I could bring in food if I needed to. They are just asking for lawsuits. I do not believe in suing restaurants and all of that because then they will just quit providing gluten free food, but at an amusement park you are...
  23. sandsurfgirl
    If you have a situation like this again, call ahead and make plans with the manager of the place. They could've made you a gluten free dinner if you called ahead but the night of, all the food is prepared in an assembly line and they can't cook something new. When people ask, I never feel like they're insensitive. It's a chance to educate them. I can't...
  24. sandsurfgirl
    We have no gluten in our house at all. My son and I are both celiac and it's just too risky. I would never bake gluten items for friends. That just seems so silly to me. When I have people over I make them gluten free food and they love it. Birthday parties we have gluten free cake and I've had anyone complain and not eat the cake. I use the Betty Crocker...
  25. sandsurfgirl
    The kids do make you just keep going. I went to Disneyland during all that stuff before I was hospitalized! I had this awful episode while I was there where I got dizzy, weak, shaking, etc. I drank a big Gatorade and then stayed for hours running around with friends even though I felt so bad. I'm glad you know about Addison's and all of that and you are...
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