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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Unfortunately the answer is yes, it could interfere with your healing and keep you reactive. The reason why is flour that is airborne is going to be breathed in. It will come into contact with your system and will keep the antibodies going.
  2. ravenwoodglass
    The first symptom to appear for me after a glutening is an overwhelming suicial depression. The rest of the stuff hits later but the day after a glutening is very hard to get through. My symptoms include strong neuro ones, it sounds like your may also. I get through it because I know it will pass, for me the depression lifts in about 24 hours.
  3. ravenwoodglass
    This question so clearly illustrates why the US needs to start using the rectal or buccosal challenges. I hope they start to in my lifetime. Rant over. I also think your 'friends' need to leave you alone about this issue. It is your body and your choice what you put in it and they need to but out.
  4. ravenwoodglass
    I am a blood test negative celiac. I would give ANYTHING to have had a doctor suggest the diet despite my negative blood tests. My being a false negative cost me a lot. You should read my signature, do you want one like that in a few years? Take his advice, follow the diet strictly. It is not as hard as people think once you get used to it. And it is sooooo...
  5. ravenwoodglass
    I have tears in my eyes right now. You have wonderful friends. They are very special people. It is so hard and alienating, especially for children. I am so happy for your son and can imagine the joy both of you felt. Bet the other kids never even noticed the food was 'special'.
  6. ravenwoodglass
    You should be proud, that was a lot to get done. Give yourself a pat on the back and enjoy the visit with your Mom.
  7. ravenwoodglass
    Your gastro is misinformed. That thinking lead them to believe that children would outgrow celiac. They don't. You risk a great deal by taking his advice. Antibodies can attack any organ they choose to including the brain. Please don't think that it is safe to back to eating gluten. Keep you health and organs intact and just stay gluten free. Also do get...
  8. ravenwoodglass
    I had a hard time finding the ingredient list for this product and the site would not let me copy it. It does contain 'natural flavors', while I don't know for sure if that is the gluten source it could be. Note I am not saying this is or isn't for sure gluten free but a statement like 'gluten safe' would keep me from trying the product. To me that says that...
  9. ravenwoodglass
    I will never go to Walgreens either for anything if this is the way they treat their customers. One thing that may help is when my doctor gives me a script for something the he has checked and certified that it is gluten-free I make sure that he writes Dispense as written, DAW on the script, there is actually a little box for that. If the doctor does that...
  10. ravenwoodglass
    Yea your derm is clueless. DH typically presents on the legs and arms, although it can appear in other areas also. As an adult mine was the worst on my jawline, scalp and across my shoulders but I still had lesions on my arms, legs and hands too. Usually but not always it shows up on both sides of the body. I am glad they are doing the liver panels on you...
  11. ravenwoodglass
    For most but not for everyone. Some of us are 'supersensitive' and then there is also the issue of items that have been 'processed' and rendered 'safe' by the processing. I don't think many companies test every single batch that comes off the line so there could be some variation. There are also folks who react to gluten in stuff that is technically gluten...
  12. ravenwoodglass
    The symptoms you mention happen to me also with a glutening. The stomach pain can be incredible. For me a dose of pepto bismal liquid usually stops the pain but does nothing for the D. Which to me is a good thing cause I want that stuff out as soon as possible. Your challenge is definately positive. Go back to being gluten free as soon as your endo is done...
  13. ravenwoodglass
    IMHO = in my humble opinion
  14. ravenwoodglass
    Your blood tests results are strongly positive. You don't need to wait for the biopsy results to start the diet. It is still possible for you to have biopsy results that are positive or even negative. False negatives are not uncommon. Go ahead and start the diet with the blood results you had you need to be on the diet no matter what the results of the biopsy...
  15. ravenwoodglass
    You could be one of the celiacs who don't tolerate distilled gluten. Your reaction to the scotch is more likely IMHO due to a reaction to that than to the coloring. Distilled grains have the same effect on me as a slice of wheat bread would including a DH breakout although there are many of us who consume them with no issue. Another possibility is you have...
  16. ravenwoodglass
    You are done with testing and IMHO a dietary trial with the gluten free diet would be a good way to go. The rate of false negatives with blood and biopsy is higher than we would like and you don't have to wait for the results of the biopsy to see if the diet helps him. In families where one member has celiac it is advised that all first degree relatives...
  17. ravenwoodglass
    It sounds like your derm may not have known what they were doing with the biopsy. I don't know if the issue clearing up with Dapsone would be diagnostic but you do sound like you have DH. Please continue with the diet and don't rely on the dapsone for long term control as it has some serious side effects. Hopefully your doctor did a liver panel before prescribing...
  18. ravenwoodglass
    And sometimes even then they will have a false negative on the biopsy. Not all GI and labs are as knowledgable about celiac and the changes seen before full villi destruction as they should be. Also there are times when the damage is patchy and can be missed. IMHO the truest test is strict elimination and the bodies response to that and then if the person...
  19. ravenwoodglass
    Finding that our lead me to a lot of research also. It was how I found out it is linked to RA which was no surprise to me since my arthritis has been in remission now for many years. Since many RA patients are also diagnosed with IBS it makes me wonder how many are suffering needlessly and taking toxic meds like I was prescribed that they wouldn't need gluten...
  20. ravenwoodglass
    I hope they listen. Thanks for doing all you can to increase the awareness of this disease and its effects on mental health.
  21. ravenwoodglass
    You would order the Enterolab testing by yourself. You don't need a doctor to order. There are differing opinions about Enterolab but many have found the test to be very helpful while others object because the testing methods have not yet been 'peer reviewed'. Your allegist can have you do a true elimination diet. This is quite different from a rotation...
  22. ravenwoodglass
    Did he get an outbreak of DH while back on gluten? If he did and he still has active lesions you could go the derm route. A diagnosis of DH is a diagnosis of celiac. You do have to be sure that the derm knows how to look for it. The biopsy needs to be done next to a lesion not on the lesion itself. This link to the NIH's celiac info may be helpful Open...
  23. ravenwoodglass
    I was diagnosed with both. Celiac first and then type 2 after I went to the doctor for help with a severe glutening. It was hard at first. In my case once the gluten issue was dealt with the type 2 basically 'went away'. Being ill can have a negative effect on our blood sugar levels. That applies, as far as I know, to more than just celiac. Once my celiac...
  24. ravenwoodglass
    As someone who is a double DQ9 I can say from personal experience that it can have devestating effects on the body and brain when combined with gluten. That gene is not to be taken lightly IMHO. If you read my signature the reason I say that is obvious.
  25. ravenwoodglass
    "And it's been so impossibly hard to stop. It's like a drug addiction, at least it feels like it" This snippet from TH's post says a great deal. For some of us there is a addictive component to our dealing with gluten. It is very much like having an addiction to a drug. Gluten can have a reaction in our brain that literally makes us addicted to it. Just...
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