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nettiebeads

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

Everything posted by nettiebeads

  1. nettiebeads
    I don't blame you for being confused. The genetic testing is for the marker for celiac disease. Just because you have the gene doesn't mean you have celiac disease. What it means is that you have the ability to develop celiac disease if the right circumstances arise. And it also means that if you are having digestive issues that suggest celiac disease...
  2. nettiebeads
    The healing rate depends on how long you were sick before dx, your own healing rate, total damage done before dx, and how strictly you are adhering to the gluten-free diet. Please note that wheat free doesn't mean gluten free! Rye products, barley (and items containing malt which is almost always made from barley) have gluten and must be avoided. And if...
  3. nettiebeads
    I agree with Gina. A positive result is much more reliable than a neg result. Whap probably happened is one and/or two of three things. - you went gluten-free, your intestines healed enough for neg. results. 2. the biopsy didn't locate the damaged area. 3. enough healing occured so that the biopsy was misread. To me, you've had two positive results ...
  4. nettiebeads
    How old are you? It's a shame that your own family can't support you - and get the education they need. What a wonderful opportunity to go someplace where you won't have to worry about getting sick from the food. I know that's ALWAYS on the back of my mind whenever I go someplace other than home or work. Kinda sucks, but it's the only way to stay healthy...
  5. nettiebeads
    Sorry, no. It's almost like saying 80% pregnant or something like that. The body will react to a minute amount - someone in another post said to take one slice of bread, divide it into 48 pieces, and that 1/48 of a slice is enough to trigger a reaction. And remember, if you have celiac disease, when the body reacts to the offending protein, it also attacks...
  6. nettiebeads
    We used to have a Golden Corral here where I live. I usually prefer buffets because of celiac disease. I can't tell you for sure on the smoked ham - if it is truly hickory smoked and not flavor "smoked" it should be fine. On the buffet side, for the meats I will ask a server if the broth is just meat juice or something else added. There's always veggies...
  7. nettiebeads
    I've lost lots of pounds (two or three at a time). Unfortunately I've put every single one back on, plus some. Turns out I was poisoning myself at a very low level everyday!!! I was eating cold cereal with malt in it! How dumb of me!! and after nine years of dealing with celiac disease, you would think that I would know better. But I keep trying. Right...
  8. nettiebeads
    The longer you are gluten-free, and the better you feel, the easier it is to ignore "goodies", especially at holiday times. Several things go into play here for me. 1. After awhile, your tastebuds "forget" how things taste. 2. IT'S POISON to me. 3. I DO NOT WANT TO BE SICK. It's more or less negative association. What you can do is make yourself...
  9. nettiebeads
    Why don't you ask your gastro to introduce himself to a poison that would make him sicker than a dog for 3 months and see how he likes it???? I agree with the Claire and Nini. My good ole gp just did the diet thing and I'm satisfied. You know your body better than anyone else can.
  10. nettiebeads
    I prefer the term disorder In all seriousness, it is not a disease in the sense of a virus attacking you. In this case disease is an archaic term - there are better terms for celiac disease but the label has been assigned and so I'm sure it will stay.
  11. nettiebeads
    oh yeah, the great fatigue. I remember it well and DON'T want it back. I thought of it as swimming upstream in a molasses river in January. And since you've already had the blood tests, why don't you go gluten-free just to see how you feel? Once the gluten is out of your system, you will start to heal and the body will feel much better w/ more energy...
  12. nettiebeads
    You may have celiac disease, or at the least a gluten insensitivity. What I do remember pre-dx was not only the D but the painful, painful gas. And constipation is a symptom of celiac disease, but I didn't think it was for IBS. And I agree with you - it's easier for drs to say syndrom than find out if it's an actual disease. According to other members...
  13. nettiebeads
    Okay, so I'm not a teen - but twizzlers and licorice is out. And if you like ice cream cake, call DQ a couple of days ahead and I think they can make one up for you that would be gluten-free. (My great nephew was born on 10/31)
  14. nettiebeads
    Of course we'll be gentle!!! We all know the pain(s) you are going through. I think celiac disease is a definate possibility. Ask for the blood test for the celiac disease panel - that might help rule celiac disease in, but won't rule it out, but at least it's non-invasive. After all you've been through a blood draw would be so very simple. And as for...
  15. nettiebeads
    well, yes and no. I think you may have more than one problem. My head was congested all summer-could even feel the water sloshing around in my eustatian tubes and I don't swim! Took otc decongestants and that helped some. But it wasn't until I realized that I had been giving myself a very low level of gluten every day that my ears cleared up. I had been...
  16. nettiebeads
    First of all, welcome to the forum. Second, I'm sorry to hear you're feeling so miserable. At least everyone here knows what it's like to have your body feel like it was betraying you, at best, and attacking you at the worst. Have you read the short list of the 200 or more symptoms of celiac disease? Believe it or not, constipation is one of them. That...
  17. nettiebeads
    My experience in reading regular Campbell soup label is that they will state wheat/wheat flour. Most of their products do contain wheat. Be very careful in reading their labels.
  18. nettiebeads
    After being sick for two years, it will take time to heal. Just as the damage was done over time, the healing will be done over time. Nope, no miraculous healings from going gluten-free. Sorry. But be sure you are completely gluten-free - no wheat, barley oats or rye, no cross-contamination, and no triggers in bath/beauty products. And FWIW, to me your...
  19. nettiebeads
    It seems everything happens for a reason. I finally searched out and found this board after going it alone for 9 years. There was one incident that was the proverbial straw a few months ago and I HAD to find somebody to help me through. I have learned so very much in two months than I had in 9 years! I go to bed every night thinking of all the people...
  20. nettiebeads
    Pamela's uses something that I'm allergic to. I think it's the xanthan gum. Darn, because they are tasty, but after one cookie my mouth and lips are all itchy.
  21. nettiebeads
    You haven't been far enough along on the gluten-free diet to get the full emotional benefits of being gluten-free. Please lighten up on yourself - you did the best you could considering the circumstances. The fact that you are concerned about how you affected others says a lot about your character. The longer you go gluten-free, the more emotionally stable...
  22. nettiebeads
    Wow! that is impressive! Even more reasons to stay 100% gluten-free!. Also a great resource for those whose drs. AREN'T in the know. Thanks!
  23. nettiebeads
    Many variables come into play here. How long was she sick before dx? Do you know how much damage had been incurred? Is she totally gluten-free? Are there hidden contaminates in her food, meds, skin care, hair care? Is there a possibility of cross contamination? I hadn't been sick for very long before I was dx'd, but it took me two to three weeks for...
  24. nettiebeads
    It's a southern thing. A hush puppy is a fritter. Most fritters have fruit in them, but not necessarily.
  25. nettiebeads
    I've had them without side effects that I can remember.
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