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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Yes dairy can be a delayed effect if you are dealing with a casien (milk protein) rather than a lactose (milk sugar) intolerance. Also when looking at labels on dairy free items be sure to look for casein as many times unfortunately dairy just means lactose free. I have found this to be particularly true while looking for a soy free and casein free cheese...
  2. ravenwoodglass
    They should at least look at the studies done in other countries. In Japan and possibly other countries my gene is a recognized celiac gene. Here if they had done genetic testing they would have diagnosed me with rheumatoid arthritis, which I did have symptoms of and is now in remission. Here my DQ9 gene is considered one for RA, not a recognized celiac...
  3. ravenwoodglass
    Welcome to the board. I hope that no matter what the blood tests say you will give the diet a good strict try for a couple of months at least. Unless you plan on doing and endo you don't have to wait for the test results to come back to get on the diet and see if it helps. Depending on how long it takes before the bloodwork is back you may have your answer...
  4. ravenwoodglass
    You have actually done done the best diagnostic tool you can have. You have tried eliminating gluten and you have gotten better. To be formally diagnosed you would have to add gluten back in and then get an endoscopy that could very well show a false negative. If that was positive you would still be back to where you are now. A gluten free diet. You...
  5. ravenwoodglass
    Except that this is only conclusive if it is positive. If it is negative the test is meaningless because of the high number of false negatives. Celiac damage is often patchy and easy to miss and also many doctors do not recognize the earlier stages of damage. The best test is response to the diet at this point, at least until the US starts using a mucosal...
  6. ravenwoodglass
    Glad you were able to find an answer, I just wish they would recognize that more than those two genes are involved. We really can't rely on gene testing for diagnosis, there are many more contributing genes than the US acknowledges. I am a prime example of that.
  7. ravenwoodglass

    ARCHIVED Our Gi Experience

    ravenwoodglass replied to Cath4k's topic in Doctors

    Cath4K, it sounds like you really lucked out with that GI. He sounds like a real keeper. Geoff, your doctor may not have been as out of line as you think. After being glutened by the product you were consuming your gut flora and fauna need balancing. Eating yogurt is the best way to do that without pills. I hope you are following her advice as that...
  8. ravenwoodglass
    They shouldn't but to make yourself feel more at ease about it you can call the company that makes them and ask. If a number or website is not listed on the package try googling the company.
  9. ravenwoodglass
    Did the same thing to me when I accidentally got a drink with it in it. One valid way of diagnosing a problem with gluten is dietary challenge. Have you tried being strictly gluten free for a couple of months and then doing a deliberate challenge with a gluten only food like cream of wheat or triscuits? You would eat it three times a day for up to a...
  10. ravenwoodglass
    Sounds like my routine for years until the 24 hour a day D set in 5 years before I was diagnosed. One note, no matter what the GI says the results of your testing is make sure you try the diet for a good length of time. The truest test of the need for the diet is your response to it. Especially if the doctor says something like 'well your not celiac yet...
  11. ravenwoodglass
    What were the results of the rest of the enterolab testing? I agree that you need to check all meds you are on. One thing I would check is if any of them have side effects that could be causing your symptoms. If you google the meds one by one and look for the companies statements on the drugs that could be an eyeopener. Also are any of them generics...
  12. ravenwoodglass
    There could be a couple of things going on. One being your not as gluten free as you think you are and/or that you are now more sensitive to CC. I am going to list all the things that got me the first year or so and see if any of it rings a bell. Toiletries - I did not eliminate gluten from my toiletries until almost 6 months in because no doctor thought...
  13. ravenwoodglass
    (((((((HUGS)))))))) I hope they figure this out soon. They hopefully at least did some blood work.
  14. ravenwoodglass
    What you do is go gluten free. Unless you plan on having an endo you can do it now. Your body will tell you if it is what it needs. I had that awful bloat also. And incredible pain GI wise especially towards the end. I was amazed that I went from a size 14 to a 4 in less than a month. It was all bloat and edema (my kidneys were effected). I am 51...
  15. ravenwoodglass
    First take some pepto bismal, that may help a great deal. You mention snacking on lots of gluten free carbs that is not always a real good idea at first. For one thing many are loaded with things that your system may not be used to and some are high in other stuff that you may very well have a problem with. Especially in the early stages your gut is in...
  16. ravenwoodglass
    There are some of us who will react to wheat germ oil. I think you are right about having gotten it on your hands and then into your mouth. The gluten molecule can not pass through intact skin but it is absorbed through mucous membranes. More advanced countries use mucous membranes in the mouth or rectum to diagnose rather than the barbaric practice of...
  17. ravenwoodglass
    "I had not heard about the issue with iodine in relationship to DH. If it is iodine that is exacerbating the problem, why is it I have never had a breakout with wild fish? I have a freezer full of wild salmon, orange roughy, tuna, and halibut. I eat these several times a week and I do not have any DH reactions with any of these. Certainly they have just as...
  18. ravenwoodglass
    Your right to be concerned that the results might be a false negative, that delayed my diagnosis for years. You should give the diet a good try for at least a couple of months no matter what the blood test results are. Perhaps you and your Mom could do it together and support each other a bit in the process. Don't give up your ideas about your cooking...
  19. ravenwoodglass
    I have wondered about this also. When I did a search it seems that celiac genes are not either. Because they are a haplogroup they don't behave quite the same way as other genes. I didn't fully understand much of what was out there but if you google 'celiac genes recessive dominent' (sp?) quite a bit will come up.
  20. ravenwoodglass
    I had severe DH since childhood and had almost every system impacted before I was finally diagnosed with celiac at 45. I was close to death. I do not show up on blood work. I do so hope she wakes up and gets back on the diet, so much more is at risk than just her skin.
  21. ravenwoodglass
    "I told my sister about the AGA and her first response was "there are a lot of fales positives". So, I know I am in for the social stigma of wanting to be "different" or a "pain" but eating a gluten-free diet. I would like for my own satisfaction and to convince my family my gluten-free diet is justified, to be formally diagnosed." Your sister is wrong...
  22. ravenwoodglass
    It can take a while. Make sure you are taking a sublingual B12 every day even if your regular vitamins have it in them that will help a great deal. Also are you being diligent about CC and about gluten in your toiletries like shampoo, soaps, conditioners, makeup? Even the very small amount of CC you would get from those products may be enough to keep the...
  23. ravenwoodglass
    Ditto Please let us know how your doing when you can.
  24. ravenwoodglass
    I agree with your allergist. It was good he made sure you didn't also have an allergy to wheat and that he acknowledged the probability that your celiac blood test was negative. Good for you for sticking with the diet and I am so glad it is helping you. If you can find the Gluten Free Pantries Chocolate cake mix that is pretty good and I like the spice...
  25. ravenwoodglass
    I know your having this for breast pain so make sure you speak up loudly if it hurts a lot. They can do an ultrasound if they should have problems with the mammo. Usually the test is a bit uncomfortable but not really that bad, as others have said.
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