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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
    If gluten makes you sick you have celiac. I don't believe in gluten intolerance. I think it's all differing degrees of celiac and the tests are inadequate. That being said intolerance is still bad if someone wants to call it that. Eat a bunch of gluten and see how you feel. If you get sick there's your answer. Then be more careful and be totally gluten...
  2. sandsurfgirl
    They have to let you bring food in if they can't safely provide food for you. I would tell them you have multiple food allergies. It makes it easier. They will comply. They don't want to get sued by you. Sea World has that same policy but if you have food allergies they let you in. Disneyland doesn't ever harass you about food. I always bring food there ...
  3. sandsurfgirl
    I had those same symptoms recently and it ended up being my hormones. My aldosterone and rennin were very low. I was actually hospitalized for 10 days because I was peeing out so much fluid and not able to take enough in. Have them test your hormones too. They should also test you for diabetes incipitus, the water diabetes. It's a lack of anti diuretic...
  4. sandsurfgirl
    There's a thread on here somewhere with the safe candies list. I miss Milky Way. It was my favorite chocolate. I loved malt. I used to buy malt powder and put it in my milk or sprinkle it on ice cream.
  5. sandsurfgirl
    I've been gluten free two years in January. I eat out a lot, but I have my set restaurants I go to most of the time. I hardly ever get glutened when I go out and I'm very sensitive. My hubby glutened me bad by drinking from my straw by accident and I had D where I barely made it to the bathroom in the middle of Disneyland. First of all start doing your...
  6. sandsurfgirl
    LOL! That made me laugh. I could see a wayward crouton flying pretty far across a salad bar, or crumbs getting wherever. I've been to a couple of buffets and had no problem though. One was a fancy place for a wedding and the chef gave me a personal tour of the buffet and went through all the ingredients. The other was at El Torito for the brunch. I just...
  7. sandsurfgirl
    I swear these doctors are flipping morons. They get their degrees from a clown university. Please tell your doctor to piss off and do not do gluten challenges. There are some on this board who got extremely ill and damaged because their doctors did this to them. One of them is in a wheelchair now. As a matter of fact I think it's insane for them to keep...
  8. sandsurfgirl
    Could have been CC from stuff being chopped on the same chopping board. Is it possible you had something earlier in the day and it got you after a few hours? This is what's so hard with celiac. I hope you feel better soon.
  9. sandsurfgirl
    Oh no! Milky way is full of malt. Bummer! Yes your symptoms can change. The rash could very well be from DH. Since you ate so many of them, I suggest you go on a clean diet for a week or two. You have damage again to your intestine and it needs good fuel to heal. Eat lots of fruits and veggies, brown rice, lean proteins, etc so it can repair. I juice every...
  10. sandsurfgirl
    I want to add... quit posting this stuff on Facebook. Your friends can't understand and they are going to say stupid things trying to be helpful. Also, use the word allergy with people. They don't understand autoimmune and how dangerous it is. Allergy makes people think of throats closing up and giant rashes and it makes them take it more seriously. I always...
  11. sandsurfgirl
    Suzanna when I first got diagnosed I sat in my room and sobbed over Guinness when I was watching the travel channel in Ireland. I had a massive anxiety attack at Sprouts and ran out of there hysterically sobbing, drove home hyperventilating and collapsed on the couch in a heap in front of my husband and small children. I was sick and had withdrawals and symptoms...
  12. sandsurfgirl
    One of my friends that I met on this very board brought some stress relieving celiac disease's to me a couple of days ago and they have been so helpful. I had to share here because especially if you are new to celiac and you are very stressed these can help. It's called Metamusic using Hemi-Sync technology. I don't really understand the science behind...
  13. sandsurfgirl
    My thyroid readings were what led them to suspect Cushings. My TSH and T4 and T3 were all low. TSH should be inverse of T3 and T4. If all of them are low it can indicate Cushings. They thought I had a pituitary tumor but the MRI was clear. Then they found the adrenal tumor on a CT scan. Adrenal is easier to cure than pituitary, so I'll take the adrenal one...
  14. sandsurfgirl
    I'm not sure about the fever but nothing surprises me with celiac. I'm having a terrible day so I'm just going to take it out on that idiot nurse. SLAP!! That's me slapping her. There is no such thing as a weak positive. Just like a pregnancy test, where if you get a faint line you are pregnant no matter what, a celiac test with any bit of positive means...
  15. sandsurfgirl
    I know! I should've won the lottery with this nonsense! On the one hand I'm so grateful to have diagnosis on it now because just like celiac, Cushings patients go YEARS undiagnosed, but the affects are far more devastating and debilitating than celiac. My tumor is pretty tiny compared to some others I've read about. But it's just so unfair and I need to vent...
  16. sandsurfgirl
    Get the gluten out of your bathroom cabinet. Use shampoos and conditioners, lotions and soaps that don't contain wheat ingredients. They almost never have barley or rye. Check your lipsticks too. Shampoo and conditioner run down your face in the shower and get in your mouth. Gluten stays on your hair and skin and gets on your food when you eat or prepare...
  17. sandsurfgirl
    When I got diagnosed celiac nearly two years ago I thought that was it, the answer to all my health problems. My health improved so much on the gluten free diet but I still couldn't lose weight and still had fatigue and a few other things. Now I find out I have an adrenal tumor (not cancerous) but it's secreting cortisol which means I have Cushings. I'm...
  18. sandsurfgirl
    In the beginning you can have withdrawals and all sorts of symptoms. If you use the search function on this forum and search for withdrawals you can see what others went through. It's common for us to have other food intolerances in the beginning. The gluten free substitutes with xanthan gum and all those complicated ingredients made me so sick at first...
  19. sandsurfgirl
    If it does upset your stomach, it may be temporary. I had to go off of dairy, soy and nighshades. Soy still bothers me but dairy and nightshades have been fine for me for a long time. I'm a fan of eating a really clean diet while you're healing anyway. Give your body every tool you can give it to heal and rebuild all that broken stuff in your system. The...
  20. sandsurfgirl
    Neuro symptoms are my first sign I've been glutened too. I get dizzy, anxious and feel like I'm crawling out of my skin. Then the tummy stuff sets in. Have you changed all of your soaps, shampoos and lotions? If they have gluten you are getting trace amounts from your hands, etc. Shampoo and conditioner run down your face into your mouth in the shower...
  21. sandsurfgirl
    Celiac can look like so many things!! I thought when I was diagnosed celiac nearly two years ago that gluten free was the answer for me. But sadly I had other stuff brewing. I blame celiac for it all. I think there is only so much damage your body can take before it starts having other problems. It seems like so many of us have other health issues. I can...
  22. sandsurfgirl
    I'm in the process of being tested for Cushings. I have an adrenal tumor and cortisol is very high, but they have to do a lot of evaluating before they decide if it is definitely Cushings and if they are going to operate on the tumor. It's very hard facing yet another diagnosis. I was diagnosed celiac not quite 2 years ago and have been doing really great...
  23. sandsurfgirl
    Hands down the most perfect bread mix is Gluten Free Pantry Basic Sandwich bread. It is a regular loaf of white bread, not weird and not crumbly. It doesn't fall apart and it makes great sandwiches without toasting and other nonsense to get it taste good. I also love their pizza crust. It says to let it rise half an hour but at my house it takes an hour to...
  24. sandsurfgirl
    I don't think celiac counts as a disability. If you can't walk and your wheelchair can't get into a building that doesn't provide a ramp then there is no other option for you. We can't eat three grains out of the millions of foods available in the world and there is food somewhere to eat, just not those particular restaurants. We aren't disabled. I'm...
  25. sandsurfgirl
    I've been saying for a long time that people need to stop threatening law suits at restaurants and demanding that they accommodate us. All it does is make them want to quit helping us out. Bubba Gump's not only got rid of their gluten free menu, but when my friend called our local one the manager said that nothing in their restaurant can be guaranteed...
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