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rosetapper23

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

Everything posted by rosetapper23

  1. rosetapper23
    With an idiot GI doctor like yours, I wouldn't bother with a biopsy. He probably doesn't know how many biopsies to take, where to take them from, and how to read the pathology afterwards. Besides, he's convinced you don't have celiac....so surely he'll find a way to match the test findings to his already lame diagnosis. I'd simply switch to a gluten...
  2. rosetapper23
    Odd.....since I believe I was infused with 200 mg (ml?) each time.
  3. rosetapper23
    I would strongly recommend that you go strictly gluten free to see if your health issues resolve. Because you only just developed symptoms, it could be that there was not enough damage to detect with an endoscopy. Also, the damage could exist farther in than the length of the scope. Therefore, since two doctors are suspicious that you might have celiac...
  4. rosetapper23
    I had chemo for breast cancer six years ago. Before I underwent chemo, I contacted Dr. Peter Green at the University of Columbia to know what to expect (he's an expert on celiac disease and wrote the book "Celiac: A Hidden Epidemic"). I wanted to know if my celiac would worsen during the chemo. Surprisingly, he told me that I should expect an improvement...
  5. rosetapper23
    Remember, celiac can be triggered at any time. It appears that in my family we tend to be born with the disease already active. For instance, I was born with Rickets, which indicated a Vitamin D deficiency--I believe I was probably deficient for my entire life. I wasn't diagnosed with celiac until I was 47, and I only recently (at age 55) found a Vitamin...
  6. rosetapper23
    Yes, motor skills can definitely be affected. Has he been following a gluten-free diet? Or do you suspect celiac because he's suddenly having trouble with motor skills?
  7. rosetapper23
    That's a decision you'll have to make. Since his only symptoms are behavioral (possibly neurological), the endoscopy may end up being negative...and then the gastro may declare that he does NOT have celiac. This is, unfortunately, something that happens with gastros that have little experience with celiac. When bloodwork is positive for celiac (and your...
  8. rosetapper23
    No, I didn't have any swelling with my infusions of Venofor. I'm curious as to the infusion cycle your doctor has placed you on. Generally, infusions are given weekly for four weeks, and then when a person's ferritin level falls below normal again, the cycle of four weeks of infusions begin again. I don't think one infusion is going to be enough to raise...
  9. rosetapper23
    Okay, I agree that doctors are uneducated and ignorant, but a response with regard to that would take up several pages. Yes, I believe that you're suffering from malabsorption issues. Yes, I believe you probably have celiac. I wasn't able to absorb iron for a LONG time after going strictly gluten free. I had to get infusions whenever my numbers dropped...
  10. rosetapper23
    It is common to have false-negative blood tests; however, you can take a positive endoscopy to the bank. Yes, you DO most certainly have celiac. Your blood tests are now negative because you've been following a gluten-free diet for a year. However, if your endoscopy is still positive, it means that there is still damage that needs to heal. Congrats on...
  11. rosetapper23
    Yes, your doctor really DOES have outdated information regarding celiac. MOST people with celiac actually are overweight rather than underweight when they are diagnosed. He doesn't know what he's talking about! I'll bet he's missed a bunch of celiac diagnoses because of his thick-skulled thinking. If you do a keyword search, you may be able to find an...
  12. rosetapper23
    You're young--you'll be fine. Return to eating strictly, and the pain in your side will eventually go away (I get the same pain when I'm glutened). You may end up suffering from a nutritional deficiency for a while (or not), but you're not going to get cancer. Relax.....
  13. rosetapper23
    I think you're right--steroids might skew the biopsy results. The poster should have been referred to dermatologist and not an allergist.
  14. rosetapper23
    My mother, son, and I all have celiac disease. One thing that we all have in common is that our tooth buds did not form properly in utero. Our dentist explained this to us, and he said that this caused our molars to disintegrate from the inside out. I thought I could "fix" the situation with my son and had his molars bonded at the very moment they cleared...
  15. rosetapper23
    If they end up doing a biopsy, INSIST that they biopsy the clear skin NEXT to the lesions. If they biopsy the lesions themselves for DH, they will come up as false-negatives. Very few dermatologist know how to correctly biopsy for DH. Good luck there!
  16. rosetapper23
    Here's a link that explains what's in it and where to order it: Open Original Shared Link
  17. rosetapper23
    I've felt safe at both Chipotle and Outback, but I feel safest at Tahoe Joe's. Great steak and steak salad! Just don't order mashed potatoes (because they like to put gravy on it). However, the baked potatoes are wonderful! Also, the pizza at BJ's Grill is fantastic, and they also serve gluten-free Redbridge Beer. Many restaurants offer gluten-free menus...
  18. rosetapper23
    Yes, I think it's QUITE possible that you have DH. Have you considered going on a gluten-free diet? If so, please eliminate iodine for a while, too, since it exacerbates DH. (P.S. Give your wife a kiss! She's a smart lady!)
  19. rosetapper23
    After 18 months on a strict gluten-free diet and still having problems, a doctor recommended that I put one scoop of Metagenics UltraClear Sustain Medical Food into my smoothie every day. After two weeks, I felt as though I'd never had celiac. Life was good...and my digestion was great.
  20. rosetapper23
    While you're healing, try to avoid soy and oats--many people with celiac can't tolerate them. I'd like to echo all of the advice you've already been given.
  21. rosetapper23
    Okay, I'm not going to give you a lecture. Actually, I did a similar thing many years ago and ended up unable to absorb iron--I spent years receiving intravenous iron infusions, so I will NEVER knowingly ingest gluten again. That said, I can give you a couple of remedies that should work for your muscles and joints. First, you should take chelated manganese...
  22. rosetapper23
    Personally, I would classify those as grains. In the book "Primal Body, Primal Mind," the author makes note that buckwheat is one of the grains found to be most contaminated with gluten during processing. Many celiacs are completely unable to tolerate oats, and unless the oat fiber you're eating is specially certified as gluten free, I would assume that...
  23. rosetapper23
    I'm so sorry to hear of your troubles! I don't know if switching to gluten-free products will help or not, but I guess it's worth a try. I use the Desert Essence Organics line for shampoo and conditioner (they are essential-oil based). Another good line of shampoos and conditioners is made by EO (which means "essential oils). As for makeup, I use Loreal...
  24. rosetapper23
    alucard, Could it be that you ate something with cinnamon in it? Some cinnamon (especially when bought in bulk) has an anti-clumping ingredient in it that can contain gluten. It's gotten me before!
  25. rosetapper23
    Hmmm....your last posting posed an interesting question. The only response I have is that gluten is considered a neurotoxin to people with celiac. It can cause all kinds of neurological damage and conditions. If he's always had a problem with diarrhea, I can understand how he may have developed anxiety about going on car rides. Anxiety in itself is a...
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