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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    It would be more valuable for you to go to the doctor and ask for the celiac panel. Gene testing can be informative but is not diagnostic. People can have the gene and never develop celiac. Your child got one gene from you and one from Dad. Are either of you showing any symptoms?
  2. ravenwoodglass
    And you may even be a bit more irritable for a couple of weeks after you have first gone gluten free as many of us do go through a withdrawl. Don't be too hard on the hubby, if he does play 'food police' with you it is because he loves you and wants you to get better. It is better that he remind you when you might make a mistake than to be like some freinds...
  3. ravenwoodglass
    Do also keep in mind that there can be false negatives with the endos. With your blood test results IMHO you need to be gluten free no matter what the results of the endoscopy.
  4. ravenwoodglass
    This is only my opinion but I would go ahead and eliminate soy until you have healed. Once you have been feeling good for a month or so then eat something with soy in it about 3 times a day for a week. If your still feeling good after that week then you can likely tolerate soy. You don't want to overwhelm yourself so I wouldn't eliminate anything else other...
  5. ravenwoodglass
    I used to be a chef. I used roux in a lot of stuff for thickening and color. Roux is browned flour and butter. The gluten in wheat also acts as a sort of 'binder' that holds stuff together and keeps things like soup from seperating in the can. I agree there are so many things that could use something else. Hopefully the larger numbers of us who are now being...
  6. ravenwoodglass
    Your not alone in your frustration with this. I'm in the same boat. Oh well back to Gluten Free Pantry. Glad in my local store they are about the same price.
  7. ravenwoodglass
    Welcome to the board. It sounds like you have a great doctor. Living gluten free can seem a bit overwhelming at first but it is so very worth it in the long run. Trading gluten for a long and healthy life is not a bad thing. After you have the biopsy done start the diet strictly. You don't need to wait for the results and false negatives on biopsy and blood...
  8. ravenwoodglass
    I could be wrong but since you ate out on Sat and this hit on next day if it was me that would mean I had gotten glutened. You might want to keep a diary of your symptoms, where and what you have eaten and what else is going on in your life. That might help you figure out if there is a pattern that points to gluten.
  9. ravenwoodglass
    Have you tried Grainless Baker? Although the loaves are a bit 'short' the slices seem the same size as regular bread. Tastes great too.
  10. ravenwoodglass
    Thanks for posting this. My budget doesn't allow the pure maple syrup anymore, even though I really like it. It's nice to know the log cabin is safe. WooHoo I can have pancakes and waffles for supper again.
  11. ravenwoodglass
    What helps me with that type of pain is liquid Pepto Bismal. I'm glad your doctor is running the stool panels. Perhaps that will pinpoint what is going on. What are you typically eating? Are you being real careful about CC? We can become more sensitive to very, very small amounts of gluten after we have been gluten-free for a while. Also have you tried eliminating...
  12. ravenwoodglass
    If you do decide to have genetic tests run please make sure they are not just looking for DQ2 and DQ8. I am firmly diagnosed celiac and both of my children were also including one by biopsy. The one who was diagnosed by biopsy later decided she wanted to have testing done again as living gluten free was hard in college. She went to one of the best hospitals...
  13. ravenwoodglass
    All the more reason to bite the bullet and get the testing done.
  14. ravenwoodglass
    Do ask your doctor for the tests she mentioned. Those are the celiac panel and your doctor only did one of the needed tests. Do keep in mind that we can still be celiac even if the celiac panel is negative.
  15. ravenwoodglass
    Hi Carl, Welcome to the board. You'll find lots of info and support here. Read as much as you can and ask any questions you need to. You have a great doctor to have caught this and give you the advice about toiletries that he did. So many doctors are so clueless that many of us had a very long road to diagnosis. I hope you are feeling better soon and running...
  16. ravenwoodglass
    Even better than just having them transferred is having those complete records sent to you also.
  17. ravenwoodglass
    Yea we really need to see the exact names of the tests done and the lab ranges as well as the results to be able to tell you anything.
  18. ravenwoodglass
    The DH rash can come and go. It depends on the person. I was covered with it as a child but by my teens it went down a bit but then flared again in adulthood. Don't be nervous about asking your doctor for testing. They should IMHO be testing everyone in the country like they do in some European countries. You doctor really should have already offered to...
  19. ravenwoodglass
    You do sound like you belong here. If the rash you speak if is blistery, very itchy and leaves long lasting purplish scars you may have DH. You could see a knowledgeable dermatologist and tell them you suspect DH, the skin form of celiac, and request a biopsy for it. Just make sure that they biopsy the skin next to your lesions not the rash itself. It also...
  20. ravenwoodglass
    I choose the last option although I didn't have the endo since the challenge had such severely negative effects, including a severe GI bleed, that my doctor chose not to do the endo. He diagnosed me based on my response to the diet and the very severe effect of the 3 day challenge he had me do after being gluten free for about 6 weeks.
  21. ravenwoodglass
    I'm so sorry you are going through I this. I can certainly sympathize as I have been there. Your thoughts in another post about seeing a doctor at a larger facility might be a good one. After all testing is done is for celiac do give the diet a good strict try for a few months. If you have a gluten issue things should improve but it might take a while. Do...
  22. ravenwoodglass
    Can you bring stuff like gluten free nuts and protein bars with you and opt for stuff like fruit while there? You might also want to post a question on the 'international' section of the board. Better to do your best not to be glutened rather than just saying the heck with it I'll just be sick.
  23. ravenwoodglass
    Your done with testing so now is when you start the diet strictly. Your body may give you the answer before the biopsy results. False negatives on biopsies are not all that unusual but your body knows the answer about whether you need to be gluten free or not.
  24. ravenwoodglass
    For me that meltdown effect is the first sign that I have been glutened. The other issues usually start showing up the next day. You could also be going through withdrawl. I was a mess at first for a month or two after going gluten free. It is a big change and even for those that don't go through a true withdrawl there can still be a bit of a greiving process...
  25. ravenwoodglass
    You could consider a challenge but keep in mind that gut symptoms are not the only symptoms of problems with gluten. It can effect mood, joints etc. Also make that challenge 3 months to be on the safe side. You should also keep in mind that celiac used to be considered to be something children would outgrow. We now know that isn't the case. It can be a long...
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