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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    I had severe nerve damage when I was first diagnosed so I had issues with this also. It has thankfully resolved to a great extent in the last few years but I found this company to be great while I was still healing. No embarrassment at the store and the people on the other end of the phone are really nice. Open Original Shared Link
  2. ravenwoodglass
    Yes the symptoms that you describe can be from celiac. I think you are doing the right thing by giving the diet a shot. Since you have been seen by the doctor for the issues and they haven't found anything wrong if you are not going to do more testing for celiac do give the diet a good strict try. Yes it is possible to have celiac and not have malabsorption...
  3. ravenwoodglass
    The last gluten foods I ate were Triscuits and Cream of Wheat during my challenge. I had 3 days of shoving those down before my world exploded into pain again. As far as foods I miss the biggy is phyllo dough and those apple and raspberry turnovers made with them. That and fresh out of the oven Italian bread. I live in an area with a large Italian population...
  4. ravenwoodglass
    What a wonderfully thoughtful person you are. Whenever I have helped anyone move all I got was a thank you and sometimes a six pack. LOL. I think your idea to give them coldcuts and cheese is a good one as is the idea to restrict where they eat the gluten bread if you have it. Got a porch? If there is a store nearby maybe you could call the deli and have...
  5. ravenwoodglass
    It does look like she may be IGA deficient, if I am reading the test correctly. False negatives are not uncommon especially with children. There are IGG tests which can be done, they might be helpful so ask your doctor about them. After you are done with all testing a trial of the gluten free diet for a few months would be in order.
  6. ravenwoodglass
    There is no reason not to make an appointment with both. If when you get to the first appointment you feel comfortable that this doctor is knowledgeable you can always cancel the later appointment. Or you can keep it as a second opinion is not a bad idea. Make sure that you mention the black stool you have seen also. If you can get hard copies of his records...
  7. ravenwoodglass
    I am so sorry you are going through this. I hope the diet helps or at least slows the progression of the disease. Are you seeing a hepatologist? That would be helpful if you can find one near you. Do make sure any drugs they give you are gluten free, check with the maker to be on the safe side since doctors won't know although a couple of mine have called...
  8. ravenwoodglass
    When you say some parts of you body change greatly during the day are you referring to your tummy? If you are bloating up evey day you may have some CC issues going on. Are you living in a gluten free home? If your not are you being very careful to avoid CC? Dedicated toaster, cutting boards, condiments and things like pnut butters etc? Do you have a pet...
  9. ravenwoodglass
    You have a wise Mom.
  10. ravenwoodglass
    You say this problem started a couple months ago. Were you having normal BM's before that? If you were what changed in your diet or life? Did you add a new med or are you taking a generic (they can change binders at will) or a new supplement, start a remodeling project, start eating out at restaurants that you hadn't been going to before, got a new pet, changed...
  11. ravenwoodglass
    I think there are a lot of us who can identify with your problem. Between the stomach rumbling so loud you could hear it across the room and the constant 'toots' I felt like a one man band at times. The advice to get a good probiotic is a good one. Eat simply, which it sounds like you are doing, but do add some well cooked veggies or fruits to your meals...
  12. ravenwoodglass
    You have had a lot of changes in a short time. You are also newly diagnosed and may be dealing with a bit of withdrawl. It is hard at first for everyone. (((((((((((((((((((((Hugs)))))))))))))))))))))) There is a world of food that is naturally gluten free. Can you try to design your meals around those? Things like a roasted chicken with some potatoes,...
  13. ravenwoodglass
    Thanks guys. I am so glad that the US is finally getting more Celiac savvy. I have always hoped that my struggles might help others. I never could have done this if I hadn't taken that first very hard step a year and half ago and sought out a good therapist and psychologist. I know there are a few of us who struggle with the fears that this disease brings...
  14. ravenwoodglass
    I have to wonder about that also. As I am sure you can tell from my signature and all the 'diagnoses' that I had fall by the wayside gluten free. I always hate to say I hope someone has celiac but if the diagnosis frees you from symptoms and allows you to live pain free then that is my hope. Please make sure you are fully glutened up for a couple of months...
  15. ravenwoodglass
    The lesions with celiac are very similiar to the lesions in MS but they do not surround the myelin sheath. Nor do they produce the debris in the spinal fluid that is looked for with MS. I was at thought to have MS for quite some time but when they did my spinal tap the neuro was really surprised because the fluid was clear. Celiac can also cause seizures...
  16. ravenwoodglass
    What was the bread? It is possible you are allergic to something in it. Your congestion could be part of your symptoms. Time will tell as you get farther on in the diet.
  17. ravenwoodglass
    What are the ingredients? I can't seem to find the ingredients on line. The reason I am asking is I am wondering if there is a sugar alcohol in this product. Some folks have issues with those. Or there could be another ingredient that your body doesn't like. I generally eat regular Yoplait which is labeled as gluten free and have no issues. If you think...
  18. ravenwoodglass
    When you say lesions are you referring to brain lesions or skin lesions? If you are referring to skin lesions and they are DH lesions that is celiac and a definate diagnosis. As to the ataxia, yes there are many causes of balance issues. However if someone has ataxia and UBO's on an MRI that is pretty specific to gluten ataxia.
  19. ravenwoodglass
    Gluten GI reactions can be delayed. I have neuro symptoms that strike quickly but the GI stuff takes two to three days to hit. A delayed reaction is not unusual. That you felt great when you had almost a month gluten free is significant. You also may have problems with dairy. I say that because you mention issues when you eat cereal which most of us have...
  20. ravenwoodglass
    Yea it was a big step for me. I'm soooo happy it was a good experience. It was a big step for me toward feeling like I am finally conquering this darn PTSD. My shrink will be really pleased I finally did it.
  21. ravenwoodglass
    Yes do check them out. I do have to say I only have had their food two or three times, I didn't get glutened but I did get soyed. However it was with take out and I didn't ask them about the soy. Just talk to the waitstaff first, with them being a big chain type place not all may be as good as the one near me.
  22. ravenwoodglass
    I am incredibly sensitive to gluten, even react to distilled gluten which most don't. I have never had an issue with any item that contains maltodextrin. Whether it is good for you or not that I can't say. As to MSG, there are foods that contain it naturally. I avoid it when it is added as an ingredient but not because of a gluten issue with it. There are...
  23. ravenwoodglass
    Yes those white lesions are called UBO's or unidentified bright objects. They are considered diagnostic of celiac in some areas of the world. Your neuro may be clueless about them, mine was, and all they can do is tell you to follow the diet. I wouldn't worry but I would stay strictly gluten free. I also have to avoid distilled vinegars and alcohols which...
  24. ravenwoodglass
    Yes they do need better tests and a better understanding of all the genes involved. My DD had her biopsy and blood postive diagnosis reversed because she doesn't have DQ2 or DQ8. I am definately a diagnosed celiac and I have neither of those either. I do however have a double copy of a gene that is recognized as a celiac associated gene in other countries...
  25. ravenwoodglass
    If you are in the Finger Lakes area and want to try an upscale but relaxed, no black tie needed, restaurant that really seems to understand food allergies and intolerances try out this place. Great atmosphere, great waitstaff and good food. They do have gluten-free pizza but most of the menu is more upscale with good steaks, seafood and wonderful sauces...
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