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ravenwoodglass

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Latest Celiac Disease News & Research:

Everything posted by ravenwoodglass

  1. ravenwoodglass
    Many on a vegetarian diet eat a lot of soy. Do you? It is not unusual for some of us to also be intolerant to soy. Soy was for me the cause of a lot of gluten like symptoms for a few years after diagnosis.
  2. ravenwoodglass
    The catalog that came was from Springhill. Burpee makes some great catalogs that have mostly seeds and I expect that one to arrive in my mailbox soon. One thing about Springhill, they are great for perennial plants but pick things like your lilacs or small trees up at a local nursery. I spent a lot on a yellow lilac to complement the yellow and orange...
  3. ravenwoodglass
    That sounds so beautiful. Are you a realist? I lean toward more abstract and impressionism and have always been jealous of those who can paint something and have someone say that it looks like a photo. Are you going from memory or did you take some pics?
  4. ravenwoodglass
    I vote for Kinnickinnick, they have a website if you can't find them locally. I almost cryed the first time I had a slice of the Italian white. It like all our bread needs to be toasted or microwaved for best flavor. Many varieties of premade gluten-free bread are parbaked and that little bit of heat makes a big difference.
  5. ravenwoodglass
    Yes. Not all the genes for celiac are recognized in this country. While in the US DQ2 and DQ8 are thought to be the only genes research has recently found 7 others. I was firmly diagnosed celiac 5 years before I did gene testing. Fortunately, since in the US my particular gene would have deemed me to have RA and the docs would have stopped looking there...
  6. ravenwoodglass
    If you really overdid it on the gluten after being gluten free your system is really telling you not to do it again. You should really baby your tummy for a bit. Eat as simply as you can and I hope you feel better soon.
  7. ravenwoodglass
    I like the one from Gluten Free Pantry
  8. ravenwoodglass
    I agree with the previous poster, a complete celiac panel should be run which will include a total IGA and the newest celiac screening test the TtG. You should go back on gluten for at least 3 months to make sure that the tests are accurate. Even on a full gluten diet there is a risk of a false negative, especially with children.
  9. ravenwoodglass
    Hey all, I got one of my flower and seed catalogs today. I will spend many hours deciding which of my favorites I want to plant this year. Spring is on it's way. Not soon enough though.
  10. ravenwoodglass
    You could very well be one of us. Make sure you don't go gluten free before you have the endo done. There is a chance of a false negative even on a full gluten diet so you want to give it the best chance you can. Did they do a full celiac panel including a total IGA on you when they tested? A low total IGA will effect the test results and also result...
  11. ravenwoodglass
    If I am repeating stuff you have already checked please forgive me. Do you have pets or feed the birds? Food and litters can be sources of CC. Do you do crafts? Are you remodeling? There are products there that can be a problem. Have you checked all your personal products, shampoos, lotions, conditioners, hair color, soaps all can be an issue. Have...
  12. ravenwoodglass
    If this pain has been constant for 3 days and you haven't been having D or excessive gas it might not be a bad idea to see a doctor. You say you don't have any of your usual glutening symptoms. So it is likely this isn't gluten.
  13. ravenwoodglass
    If I had waited for a positive blood test my celiac wouldn't have been found until my autopsy. Which would have undoubtedly taken place by now. As mentioned false negatives on blood and biopsy are certainly not unheard of. You don't need a doctors permission to eat gluten free so if you know you have a problem with gluten go gluten free. When you see...
  14. ravenwoodglass
    I know how hard things are for you right now. I have been there. It can take a while to heal and if you have been eating the Corn Flakes you haven't been gluten free yet. We all do things like that especially at first. With the neuropathies you may also be one of us who gets a withdrawl effect when they first become gluten free. That may effect your...
  15. ravenwoodglass
    You need to be avoiding more than just wheat. You also need to avoid barley malt, which is in the corn flakes. You should call and ask also any time you see the words 'natural flavors' in the ingredients of an item. Barley, oats and rye do not have to be clearly labeled as they are not on the allegen lists. Also make sure all supplements and script or...
  16. ravenwoodglass
    These tests are the full celiac panel. A total IgA should also be run to make sure you are not IgA defiecient as this will cause a false negative Serologic Tests EMA (Immunoglobulin A anti-endomysium antibodies) AGA (IgA anti-gliadin antibodies) AGG (IgG anti-gliadin antibodies) tTGA (IgA anti-tissue transglutaminase)
  17. ravenwoodglass
    Hi I am so sorry it took me so long to see this. Have you gotten some sublingual B12? That will help a great deal with healing the nerve stuff. Be really careful with the homeopathics, many of them use distilled gluten grain alcohol as a vehicle and many of us with neuro symptoms are sensitive to it. Also watch those supplements for stuff like wheat...
  18. ravenwoodglass
    I have used this with no issues. I don't think there are any oat or rye derived ingredients in it but you should do what you are comfortable with. One thing that I have also used that is for sure and for certain gluten-free is NOW's Cocoa Butter and Jojoba Oil. It comes in a blue jar and that is literally all that is in it. I thought it would be really...
  19. ravenwoodglass
    I know it is hard not to get angry but take this as an opportunity to educate. There is plenty of regular food like rice, veggies, meats and such so once they know how they shouldn't have a problem feeding him. There is so little education for folks in the health care fields about gluten avoidance that I think we kind of have to just take a deep breath...
  20. ravenwoodglass
    Hardly rude just short concise and to the point. I was up at 4am twiddling my thumbs again today so I have lots of extra hours in my day to be longwinded.
  21. ravenwoodglass
    I agree with the previous poster. I would go ahead and get the full panel run and then give the diet a good strict try for a few months. You have nothing to lose by trying the diet even if the panel is negative. I relied on blood tests for years with no doctors ever telling me of the risk of a false negative or suggesting that I give the diet a try. The...
  22. ravenwoodglass
    Those little red dots could also have been caused by CC and not by salt. Gluten can and does effect the oral mucosa. There are other countries where they use the mucous membranes of the mouth or the rectum for challenge and diagnosis so that folks don't have to be made ill for months on a food challenge. You also have to keep in mind that the D that results...
  23. ravenwoodglass
    I am always reluctant to tell of my experience on my gluten challenge after being gluten-free just for a little over a month. I also had a great response to the diet and my GI insisted that I do the challenge for confirmation and an 'official' diagnosis. I got my diagnosis but not because I had the biopsy I got it because the challenge made me so sick it...
  24. ravenwoodglass
    Do keep to your full gluten diet. Make sure even if the endoscopy comes out negative that you give the diet a good strict try for at least 3 months after it is done. You don't have to wait for the results appointment to get started on the diet. You have come to a great place to find out what you need to do. You can use this time getting ready by getting...
  25. ravenwoodglass
    After you have the complete panel done with the total IgA you could then just go gluten free. Being gluten free is not going effect the colonoscopy and will not interfere with any tests other than the one for celiac. The testing for celiac through biopsy is done on a microscopic level and many times damage can not be seen with the naked eye. Multiple biopsies...
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