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Bubba's Mom

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Everything posted by Bubba's Mom

  1. Bubba's Mom
    They still aren't teaching much about Celiac in med school. I was going to a clinic where we were seen by Residents..fresh out of school. I was told I couldn't have Celiac...because I'm too old! A second Resident I saw said the same thing. They felt the DX was wrong.
  2. Bubba's Mom
    Hello..and welcome! It's crazy how many vials of blood they can take when doing tests. I figured if I wasn't anemic when they started..I should have been by the time they were done? I hope the tests give you the answrs you need.
  3. Bubba's Mom
    I've had 3 endoscopes now. I had a bit of gas after the last one, but not pain from the biopsies..and they took quite a few. Maybe yours is gas..or the effects of eating gluten? It wouldn't hurt to call the Dr.s office and tell them how you're feeling?
  4. Bubba's Mom
    This forum is my only support group. When I was DXed the Dr. said "you have Celiac disease. Don't eat gluten. Look it up on the internet." There was no paper given to me explaining the diet, or foods to avoid. Certainly no info was given to ensure I had a safe kitchen and how to avoid cc. I didn't understand what was happening to me, and my family didn...
  5. Bubba's Mom
    They made a DX and never told you? That's inexcusable! I wanted to change PCP so I picked up my medical records (which they charged me for). I was shocked at how reports of my visits were described. Quite a work of fiction! I called the GI's office that did my scope and blood tests in Dec. I was told my blood work shows I don't have Celiac. What...
  6. Bubba's Mom
    I'm in the same boat with you. I've cut out gluten, soy, dairy, peanuts, and MSG. When I had a rescope at the 6 months gluten-free mark it showed no healing and the Dr. said maybe refractory sprue..or Whippe's disease? I was sent to the Mayo clinic in Florida. They did an extended scope that reaches farther down and said I don't have Whipple's disease...
  7. Bubba's Mom
    It's possible you are still reacting to the gluten episode. If your reaction includes dizzyness, that means some of your reaction is neurological, and that takes longer to heal. Dizzyness can also be linked to B vitamin deficiencies, or anemia so a supplement is a good idea. Have you had your vitamin/mineral levels checked? It won't hurt you to supplement...
  8. Bubba's Mom
    If it were me..I'd get a copy of the test results. I called for the results after my last scope and blood work and the nurse told me HER opinion of what it meant. It was wrong! I'm glad I double checked.
  9. Bubba's Mom
    I'm so happy for you both! It's encouraging to see people are doing well on the diet. I think a lot of people post when they're new to the diet, and not feeling very good? Then, if they respond well to the diet..just sort of move on and we don't hear from them?
  10. Bubba's Mom
    I would be afraid to try this. Those with Celiac didease are more likely to get other autoimmune disease/cancers. If you ate something that caused enough inflamation in your system to trigger another disease, it would be too late to have a do-over by the time you realised the disease process had started?
  11. Bubba's Mom
    The pain in the ear symptom is what I get if I consume MSG or autolized yeast extract. It took me a while to figure it out. It takes away most brands of chicken broth. I'm still experiencing the dizzyness and off-balance thing. I had a bad reaction to a gluten free lunch meat I got at a deli almost 6 weeks ago. I think it may have been cc? I still...
  12. Bubba's Mom
    So far.. I'm reacting to gluten, soy, milk, peanuts, MSG..and maybe something else? Soy and dairy are reallt tough for me. It's hard to even find supplements that are safe..and I need them. I'm told that we may get some foods back once we heal? I hope so! I want chocolate back.
  13. Bubba's Mom
    It's really scary isn't it? There's not really anything we can do about either can we? Washing food won't fix it..and there's no way we can go without breathing!
  14. Bubba's Mom
    This may just be a part of the healing process? I wouldn't be too overly concerned. Keep a log of everything you eat, along with any symptoms you have. It's possible you are reacting to something else in your diet? It's pretty common, especially while you are healing. Many food reactions are delayed, so having a log helps you go back and note anything...
  15. Bubba's Mom
    I found I was getting headaches more frequently too. I keep a log of everything I eat, along with any symptoms, which helped me learn that dairy, soy, and MSG(autolized yeast extract) was getting me. I highly recommend a food log. Many of us react badly to things until we heal.
  16. Bubba's Mom
    Marsh scale is what they use in the lab to measure the amount of damage to the villi. The person who examines the tissue from the biopsy will then write a report about the findings. My GI didn't know where my damage fell on the Marsh scale, because they didn't tell her, she just knew there was damage.
  17. Bubba's Mom
    After going gluten-free I found I was reacting badly to soy too. It's a bit harder to find vitamins without soy because they like to use it for vitamin E..and sometimes for D3, but they're worth looking for IMO. It's a good idea to keep a log of everything you eat and note any symptoms you feel. Many food intolerances have delayed reactions, so having...
  18. Bubba's Mom
    I asked my Dr. about this when first DXed. She said that vitamin supplements contain higher doses of the vitamins than one would normally get from eating the food. If there is any part of the intestine that isn't damaged, you will absorb something, and that will help you from getting too low on vitamins. Whatever isn't absorbed will just make expensive...
  19. Bubba's Mom
    Gluten gives me that effect. I got some gluten-free deli lunch meat 6weeks ago that *might* have been cc? I've been dealing with the off-balance issue since then. It is getting less in intensity though. Neurological symptoms can take a while to heal. Double check to make sure there's nothing that's sneaking into your diet.
  20. Bubba's Mom
    Reacting to some of the alternate flours used in gluten-free baking causes reactions in a lot of us at first. They can be hard to digest, and some of the gums used can irritate as well. Try sticking with whole foods at first, and maybe have an occasional baked treat once you've done more healing? There's a gluten-free bakery in our town. I tried a couple...
  21. Bubba's Mom
    I eat the cream of rice. It cooks up pretty quickly, and I like the texture. The one I have is cream of brown rice.
  22. Bubba's Mom
    You should replace porous cookware (nonstick)/storage bowls (plastic) and cutting board,colander, along with wooden spoons. I also got a new can opener because the old one is still used to opn canned pasta in our household. Replace your scratched non-stick cookware. That stuff isn't good for anyone eating from it. If you have nice stainless steel. or...
  23. Bubba's Mom

    ARCHIVED Ibs

    Bubba's Mom replied to badgerette's topic in Related Issues & Disorders

    Keep a log of everything you eat, along with any symptoms. Many food intolerances are delayed reaction, so having a way to know what you ate/when symptoms appeared is very important. It will help you sort out what's best for your body, as we are all different. It takes a little bit of dectective work. There are tests for allergies, but intolerances aren...
  24. Bubba's Mom
    I don't know about boils, constipation, and dizzyness from gallbladder? I currently have C and dizzyness, but they don't know why. The C can be because of your thyroid, or along with dizzyness and skin problems *could* be from gluten? With your history of symptoms it sure looks like Celiac to me. At the very least, gluten sensitivity? Going completely...
  25. Bubba's Mom

    ARCHIVED Celiac?

    Bubba's Mom replied to lilly21's topic in Dermatitis Herpetiformis

    I had pain very much like you described. I had an ultrasound on my gallbladder and was told I had a bit of sludge, but no stones. I was told it was fine. It wasn't fine though. It continued..even after going gluten-free. Finally. I was given a gallbladder function test. This is called a HIDA scan. It measures how well the gallbladder squeezes the bile...
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