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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Also be on the lookout for unusual side effects and ideation. There have been folks who have had psychotic episodes while on the drug and it can increase the impluse to harm ones self. Not saying this will happen to you but for my family this drug was a nightmare in a bottle and almost cost me one of my children. Use caution.
  2. ravenwoodglass
    Count me in. My neuro symptoms were almost as troubling as the gut stuff and started loooong before tummy problems hit. I had lost my reflexes in my legs and developed ataxia in childhood. I have not fully recovered from the ataxia, but I was in my forties before I was diagnosed so had a great deal of long term damage. I have come a long way though and...
  3. ravenwoodglass
    Try to make sure he does a full celiac panel and also checks for anemia and your B12 levels while he is at it. Also even if tests come out negative be sure to try the diet after they are finished.
  4. ravenwoodglass
    No it doesn't. Even if they scope you today and don't find damage it doesn't mean you don't have a problem with gluten. You have 22 ft of small intestine and damage can be hit and miss and if the right place is not biopsied you can end up with a false negative. There are also changes that precede the total loss of the villi that are related to celiac but...
  5. ravenwoodglass
    I drink wine, gluten-free beer, clear rum and potato vodka. I personally do avoid distilled gluten grains in alcohol and vinegar but not everyone needs to.
  6. ravenwoodglass
    It is totally overwhelming and requires a lot of changes. I am glad he is turning out to be supportive and hope this increases. The beginning of the diet also often makes us a bit more emotional than we normally would be and your need to vent is understood. I hope you are feeling better soon and that things smooth out.
  7. ravenwoodglass
    I am glad to hear you are feeling better. Don't loose heart with the extememly limited diet you are currently having to do. After you have had some more time to heal you can try cautiously adding back in one item a week, 3 times a day, in a pure a form as possible and watch for a reaction. Often after we have healed the gut for a while other intolerances...
  8. ravenwoodglass
    The first thing you need to do is to get to the doctor for a celiac panel. You need to do this before becoming gluten free. While blood tests are notorious for false negatives it is worth your while to get them. The reactions you speak of do sound like gluten reactions and after testing is done then no matter what the results you can go gluten free and...
  9. ravenwoodglass
    This is one place where you can 'whine' all you want. Many of us had a long hard road to diagnosis and dealt with clueless doctors so you are not alone. Do keep in mind that the blood testing and even the biopsy process can definately tell you that you have celiac but it can not definately tell you that you don't. Do make sure to stay on gluten until you...
  10. ravenwoodglass
    You are in a very tough spot. This may sound like an odd suggestion but it is worth mentioning. Have you talked to social services and disability folks to see if there is some way to get out of there? You may qualify for disability or be able to get temporary assistance to find a cheap place to live, even a one room studio would work for now. You might...
  11. ravenwoodglass
    I am glad to hear that you are doing so well. Be patient with the neuro stuff that can take some time to resolve. I would suggest some sublingual B12 if you are not taking it already. It will help the nerves fire better and could help speed the healing process a bit.
  12. ravenwoodglass
    I am going to make a suggestion that will likely make you shudder but.....How much soy are you consuming? It is not uncommon for some of us to also be intolerant to soy and unfortunately it seems to be in almost as much as gluten is.
  13. ravenwoodglass
    Have they seen a dermatologist? The rash sounds very much like DH. If a biopsy of the tissue next to the lesions is done the antibodies will show if it is DH. Not all derms are familiar with DH, mine was diagnosed as poison ivy for my entire childhood so I am including a link to the NIH's celiac awareness campaign that talks about DH specifically. Also...
  14. ravenwoodglass
    I misunderstood the original query and thought the oil was an oral preperation. I would still want to know what the vehicle, the oil, was composed of. If it was not a gluten source, or for me soy, I might give it a try. I have never heard of it though.
  15. ravenwoodglass
    Can this be submitted without giving out your name?
  16. ravenwoodglass
    For any chance of the testing to come out accurately you need to get back on gluten today. Even then you may still have a false negative. Do note how you are feeling now and I would note in detail your symptoms when you go back on gluten. Chances are you are in for some miserable days but you have no chance of being diagnosed if you are gluten free or gluten...
  17. ravenwoodglass
    Glad to hear you are back on the diet. What you experienced was the reason why doctors used to think children outgrew celiac. You healed fully on the diet and it can take years for the disease to become obvious again after adding gluten back in. For you, if I read correctly, it took 13 or so years to become fully symptomatic again. In addition blood testing...
  18. ravenwoodglass
    And what exactly are they considering symptoms? Are they only considering gut symptoms? What about the effects on the brain, on learning and mood? Are they considering things like joint and muscle pain, fatigue, weight issues (many of us explode weight wise long before the D hits and weight loss is seen), how about allergies and inflammatory responses...
  19. ravenwoodglass
    Can you get him to come on the board and read some of the posts from folks who have been dealing with this for a while? It is hard to get used to and many have a hard time understanding just how much gluten impacts not just the body but also the mind. As you have seen we celiacs are quite supportive and protective of each other for the most part. I apologize...
  20. ravenwoodglass
    Perhaps you could try magnesium supplements that don't have 'oil'. Do you know what form of 'oil' it is?
  21. ravenwoodglass
    Plan on making myself sick for weeks, I don't think so. Why in the world would you be making plans for that?!!!!!!! Perhaps instead you could plan on doing some shopping and making yourself a nice gluten free pizza and a chocolate cake. Or you could plan a 2 or 3 week stint of 'me days' of relaxation and doing stuff you haven't had time for instead of...
  22. ravenwoodglass
    I agree you need to sit him down and have a serious talk with him. If he can't do a simple thing like brushing his teeth to help keep you safe and healthy then perhaps he is showing a side of himself that is quite enlightening. Personally I would make the home gluten free and let him have his cookies and gluten food elsewhere. IMHO this is not a man who...
  23. ravenwoodglass
    Celiac can cause autoimmune destruction of the liver. I don't think it is very common but having elevated liver enzymes is common and when celiac caused the enzyme levels to be elevated they will go down after we have been gluten free for a while. If you are doing the gluten-free diet with him you need to be aware that Lay's products are not as gluten...
  24. ravenwoodglass
    You need a new doctor ASAP if you feel you need a doctor to diagnose. I think your body has already given you the answer. There are folks who have been selfdiagnosed and simply went from their own 'gut' feelings and the resolution of symptoms. You don't really need a doctors diagnosis to be gluten free and there are pros and cons to being diagnosed....
  25. ravenwoodglass
    I am glad he got back to you. I am sure you are relieved at the good news.
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