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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    As long as you can afford the bill they hand back to you.
  2. ravenwoodglass
    Did they biopsy the lesion or the skin next to it? If they biopsied the lesion itself then the test would be a false negative as the biopsy needs to be taken from intact skin next to the lesion.
  3. ravenwoodglass
    That only sounds right if he is having your little one go gluten free during that year. People can have celiac even with none of the blood tests being positive. I suffered greatly because I am one of those 20 to 30 percent who don't show up positive on the blood tests. I was tested over and over for years because I was a 'testbook' case and as my new GI stated...
  4. ravenwoodglass
    My last endo done about 5 years after I was diagnosed was normal. It can take us up to a couple of years to heal fully. Are you eating a mostly whole foods diet? That will help you heal the fastest. Also if you have been getting CC'd off and on that can slow down the healing a bit also. I don't remember where I first saw the 5 year timeframe for decrease...
  5. ravenwoodglass
    It could also be the oats. Even gluten free oats can be a problem for some of us. If you eat other items with soy it is more likely to be that you react to oats.
  6. ravenwoodglass
    I am not a fan of genetic testing for the purpose of ruling out celiac as there is much still to be learned about it. If she has severe reactions to being glutened then she needs to stay away from it. I had celiac for over 40 years before I was diagnosed. The last 15 of them I was severely ill. On a scope done 5 years after diagnosis I was fully healed...
  7. ravenwoodglass
    Did you tell the doctor that you had been gluten free for that long? Yes your intestines could have healed in that time. Please stick with the diet. Your panel numbers are quite high for a reason. I am sorry you had such a lousy doctor. By the way your family should also get panels done as celiac is strongly genetic.
  8. ravenwoodglass
    You need to let your doctor know that the lab person changed the orders. That is not something she should have done. As the previous poster stated the biopsy is needed to tell if the villi are damaged as the damage. Now that you have had blood and biopsy done go ahead and start the diet strictly. Your body may give you the answer before you even get the...
  9. ravenwoodglass
    What are you eating as a snack? Soy is one of the top 8 allergens so if it is in something it will be listed in the ingredient list.
  10. ravenwoodglass
    DH is generally very itchy and when it heals it will leave long lasting purplish scars. If it itches badly it may be DH. Hives will also itch but the lesions are usually the size of a mosquito bite, DH lesions tend to be smaller and if you can keep from scratching them you will often see blisters. No matter what it is I think you have made the right choice...
  11. ravenwoodglass
    No the negative scope does not mean you are not celiac. Your blood tests were postive because you are forming antibodies to gluten and the diet has healed your small intestine. You need to be actively consuming gluten for the scope to have any chance of a positive and even on a full gluten diet the false negative rate is still rather high. With your positive...
  12. ravenwoodglass
    Gluten is a neurotoxin for some of us. I know what you mean about the depression I struggled with it from childhood myself. Now that overwhelming depression is the first sign I have gotten glutened. Thankfully it now lifts within 24 hours, just in time for the migraine and GI stuff to start. I have been amazed at the difference being gluten free has made...
  13. ravenwoodglass
    After years of D that was pretty constant, like 10 to 15 times a day and at night I was concerned about C at first. The first 4 days on the diet I had no movement at all and then went to having one a day. That once a day has been consistent now for 8 years unless I get glutened. I will get C if I am consuming soy along with nasty stomach pain since I am also...
  14. ravenwoodglass
    Not eating is not a good solution although I know it is tempting. Has your doctor run stool samples to make sure that you haven't picked up food poisoning that is lingering? Too often doctors assume it is IBS or CC and neglect to test. I had salmonella poisoning a while back and had to insist strongly on stool tests. My doctor insisted it was IBS. I got a...
  15. ravenwoodglass
    While topical gluten can not cross intact skin, and if you have a rash it is not intact, contact with mucous membranes can cause a reaction. There are doctors who are now advising people to avoid it in topicals as well as food. Topical gluten cross contamination will give me the same reaction as cross contamination in food. GI issues (which for me are delayed...
  16. ravenwoodglass
    Look on your script monograph or the bottle to see who the maker is. Then do a search with the company name and the words 'contact info'. That will often bring up a number to call the maker. Sometimes they do have to get back to you as the customer service rep will have to contact the lab for the answer. Also do have your pharmecy note that you need gluten...
  17. ravenwoodglass
    Some 'lazy' bartenders will also shove a used glass into the ice for a refill instead of giving the customer a fresh glass or using a scoop for the ice. CC could occur that way also. In addition some bars used to use a little 'billy club' to break up the ice. The bartender would hold the ice in their hand and whack it with the club. I don't know if this is...
  18. ravenwoodglass
    It is hard especially at first when we are still sick and have little energy to 'cook everything from scratch'. Going with whole foods helps a lot. I find having a rice cooker and crockpot and cooking in big batches helps. While we do get a income tax deduction I personally have never been able to use it. The year before I was diagnosed we spent 17 grand...
  19. ravenwoodglass
    I am sorry your family is giving you such a hard time. To get a diagnosis at this point you will need to do a challenge for at least 2 to 3 months to redamage yourself enough for any chance of an accurate blood test or biopsy. You might even end up with a false negative even after all that pain. You could use Enterolab for genetic testing but after 5 years...
  20. ravenwoodglass
    Yes if after being strictly on the diet the blood antibodies go down you have your answer. False negatives with both blood and biopsy are not uncommon especially with children. Since your child had a positive blood test you should put him strictly on the diet. Some doctors will diagnosed based on his response. It would be a good idea to get the testing done...
  21. ravenwoodglass
    Glad to hear you have gone gluten free. Hopefully that is the answer for you. I know how frustrating it is when you feel so bad and doctors don't have any answers. Your response to the diet is the most important thing so do be strict. It does take some time when more than just the gut is involved. Althought my GI symptoms resolved quickly it took a couple...
  22. ravenwoodglass
    It looks like you little one is celiac. It would be a good idea to have everyone in the family tested. That first result is really high. No matter what the other test results are you should start him on the diet as soon as your done with testing.
  23. ravenwoodglass
    All of them.
  24. ravenwoodglass
    We are hearing this advice from more doctors. I just wanted to add that I use Garneir products, a lot of their hair and skin products are safe. Dove will also label ingredients clearly. Giovanni hair products were another I used a lot but I don't know about their skin care. I do remember them being very helpful when I called.
  25. ravenwoodglass
    I agree and could have written this post except they thought I had MS not MD. In addition to celiac I also have a connective tissue symdrome, Ehlers Danlos, so a lot of my joint and muscle problems were attributed to that, fibro and arthritis. Even with brain lesions and flat line electromylograms they still were telling me it 'was all in my head and I wanted...
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