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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    In the US the MFS would have to be declared if it was from wheat. Barley malt is ususually the culprit in natural flavors and does not need to be declared.
  2. ravenwoodglass
    I don't know about fruit snacks but for breakfast sausage I use "Jones" it is marked gluten free on the box. I get them in the freezer section of the store.
  3. ravenwoodglass
    Gene testing is in it's infancy and while it can be a part of the diagnostic picture it is far from conclusive. There are 7 other genes associated with celiac but most are not recognized as celiac genes in the US. There are firmly diagnosed celiacs that do not have either of those two genes. I am one of them. In the US my celiac gene would have given...
  4. ravenwoodglass
    If this started when you started the med you should discuss it with your doctor and see if switching to a different med might do away with it. I am assuming you have checked with the maker of the drug and know for sure that it is gluten free. Doctors are for the most part clueless about what drugs are gluten free and the way they label drugs even a pharmacist...
  5. ravenwoodglass
    I react to wheat and barley grass and there are others who do also. Personally I stay away from those ingredients and use great care in reading supplement labels because of those ingredients and the reaction I have gotten from them.
  6. ravenwoodglass
    I am so sorry that you are suffering so much. The first thing I am going to suggest is that you call the office of the doctor that you have an appointment with and ask to be put on the 'cancellation' list. That way if someone calls and cancels you can be gotten in sooner. Also talk to a nurse and explain how much pain you are in and also about the D and...
  7. ravenwoodglass
    Yes it is. Celiac triggers an autoimmune response and the formation of antibodies. The antibody reaction is what causes the symptoms and sometimes (according to my allergist) this process can take a bit of time before things reach a tipping point. If you have an item that you suspect is giving you issues try dropping it until you are feeling better and...
  8. ravenwoodglass
    Gluten reactions can be delayed. For some it takes 3 to 7 days for a reaction and in addition there are celiacs that are asymptomatic. Why is this doctor questioning the biopsy? Is he a new doctor? Is she still having issues? How has she done on the diet? Did issues she had resolve at all? If she has been off gluten she needs to be back on it for about...
  9. ravenwoodglass
    If you haven't already you should see a dermatologist. They can biopsy to see if it is DH or perhaps help you to figure it out. Is there anything you started eating or taking about the time the rash appeared? Are you on a generic med? They can change binders at will and it may no longer be gluten free. Have you added a new supplement or OTC product...
  10. ravenwoodglass
    Now is when you give the diet a good strict try to see if it helps. Celiac testing has a relatively high rate of false negatives for a variety of reasons. Doing the diet may give you the answer you need. I was on the med you mention for a couple of years and for me it was quite sedating. You might want to give the diet a week or two before you start the...
  11. ravenwoodglass
    You do sound like you could be one of us. Have you had a celiac panel done? If not I would suggest that as a first step before you stop eating gluten.
  12. ravenwoodglass
    Hello and welcome to the board. There are folks here that are gluten free without a formal diagnosis. You don't really need a doctors permission to be gluten free. I wonder with the doctors office saying "unlikely to have coeliacs" what your test results are. Sometimes a low positive will be reported as a negative. Can you get a copy of the results...
  13. ravenwoodglass
    In addition to the advice you have gotten look at what you have eaten for up to 3 days before the reaction. For some of us the gluten tummy reaction can be delayed.
  14. ravenwoodglass
    I feed mine Orgins, it is totally grain free. I have also used Innova Evo which is also grain and soy free.
  15. ravenwoodglass
    I don't have any research on this but in my case my allergist stated that my immune system was basically in hyperdrive at the time he did allergy testing on me. Out of the 99 substances tested the only one I didn't react to was beech trees. He immediately put me on a very strict elimination diet and I was finally correctly diagnosed and confirmed by my...
  16. ravenwoodglass
    Gluten can be sneaky. Have you eliminated it from your toiletries, makeup, shampoos and such. Are you on any prescription or over the counter meds? How about supplements? All need to be checked with the makers. Generic drugs need to be checked with each refill as they can change binders at will. If you have pets gluten foods for them can cause issues...
  17. ravenwoodglass
    Have you visited your doctor about this? You may need to have stool samples taken to see if you have picked up food poisoning and to check out other things that might cause this. It could be another intolerance rearing it's head but it could also be something else. Please call the doctor tommorrow and let them know what is going on.
  18. ravenwoodglass
    I am glad to hear that. Sometimes our bodies give us answers the tests can't. I hope you get some relief soon.
  19. ravenwoodglass
    You should go back to the dermatologist. They can do a skin biopsy to the area next to the lesions and look for the antibodies. If they biopsy the lesion they are doing it wrong. It doesn't sound like DH to me but that doesn't mean it isn't gluten related as gluten can cause a number of skin issues. DH creates tiny blisters that can spead into clusters...
  20. ravenwoodglass
    Even on a full gluten diet with symptoms there is a chance of a false negative. You have 22 ft of small intestine and if the damage is patchy it can be missed. After all testing is done that you choose to have done then do the diet strictly for a couple of months and see if it helps even if the results are negative. Also get an actual copy of the labs...
  21. ravenwoodglass
    Yes you should call your doctor. You could have gotten food poisoning or have something else going on.
  22. ravenwoodglass
    In my opinion you have a good doctor. If you want to be tested you need to go back on a gluten diet for at least 2 to 3 months. Then you could have blood testing and biopsy which may come back a false negative. Your response to the diet followed strictly is a very important diagnostic tool also.
  23. ravenwoodglass
    Is he still making progress symptom wise on the diet? You really don't need a doctors permission to go gluten free. There are some of us that also have neurological impact which can cause depression, anxiety and other issues. He may be struggling with that and it may ease up a bit after he has been gluten free for a while. Try to be patient with him and...
  24. ravenwoodglass
    Since your concern and reason for having the procedure was to look for cancer or a precancerous condition and not for diagnosis of celiac I would ask for a call back from the doctor. If the biopsies were done only to look for celiac and were not biopsies of areas that looked 'abnormal' and might be questionable then I would not go through the procedure again...
  25. ravenwoodglass
    The postive test combined with all your other issues makes it likely that you are indeed one of us. I wish my rheumy had been as inteligent as yours. My hands would sure look a lot nicer. The good news is that if you do have celiac there is a good chance that your arthritis and your other issues will resolve or go into remission. The choice of whether...
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