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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Those horrible dark feelings are for me the first sign I have been glutened. If life seems not worth living I know I am in for a couple of rough weeks. It does help pinpoint a gluten incident for me also. You need to be as strict as possible with the diet. It can be hard when your new to the lifestyle but it will get easier in time. I wish I could be more...
  2. ravenwoodglass
    Welcome to the board. Being gluten free for six weeks before testing will impact the tests. You need to go back on gluten for a few weeks and then retest if you need a diagnosis. Your total IGA is very low so the celiac related tests for IGA will be negative. So yes you could have celiac even with the negative test results.
  3. ravenwoodglass
    It is hard to understand why we have to be so strict and you are not alone in struggling. It is hard when you don't have GI reactions but eventually you may notice symptoms that you thought were unrelated that resolve and then show up to give you a clue when you have gotten glutened. Celiac is autoimmune and can impact may parts of our bodies. Some will...
  4. ravenwoodglass
    I give my little dog a mix of homecooked and grain free food. I buy the least expensive cut of chicken already cut up. Then I boil it until a fork placed in a meaty spot will make the meat fall off the bone. I then pick out the bones and add frozen peas and carrots. Sometimes I will throw in a bit of rice. I then drain it and promptly refrigerate. I use...
  5. ravenwoodglass
    Sorry you are having such a rough time right now. I had severe neuro impact before I was diagnosed and it did take a long time to resolve. However those symptoms were present before diagnosis and then slowly resolved with the help of a physical therapist. It concerns me that these issues have appeared for you after you had good resolution of your celiac...
  6. ravenwoodglass
    You could be reacting to the gluten you had the day before the blood test. If your body was starting to calm down gluten free your antibodies may have flared after your day of gluten foods. Sometimes it can take up to a week for a reaction to hit hard. In myself it takes about 3 days for the reaction but people differ. If you are done with all celiac related...
  7. ravenwoodglass
    It would be a good idea to mention this to your doctor. It could be celiac related but it could also be something unrelated. Are you having other issues like D or C ? If your female you could have something going on like ovarian cysts or another problem in that area. Hope it resolves for you soon.
  8. ravenwoodglass
    That would be the case for myself as I only get migraines when glutened. Don't know that is the answer for you but it is possible.
  9. ravenwoodglass
    The inflammation that celiac causes can contribute to problems with just about any body system. In my case it did cause me to have asthma (don't think that is spelled right) that resolved after I had been gluten free for a while. It can take some time for symptoms to resolve. I do hope you had the blood work done before you went gluten free. If not it...
  10. ravenwoodglass
    Are you referring to starch in general or Codex Wheat Starch? Codex is considered safe but many, many of us react to it. I wouldn't touch it with someone else's hand.
  11. ravenwoodglass
    Do go get yourself tested as your symptoms do sound like they could be celiac. Do not go gluten free yourself or have your daughter go gluten free until all celiac related testing you want to have done is finished. After that go gluten free for a bit to see if it helps.
  12. ravenwoodglass
    There are celiacs that don't have the usual gene that are associated with celiac. Which blood tests were you positive for? Some of those are pretty specific to celiac and a couple can be seen with other issues. If you are done with celiac related testing you have nothing to lose by giving the diet a good strict try.
  13. ravenwoodglass
    Genetic testing can be part of the diagnostic process but it is not a definate that you don't have celiac if you don't have either of the two most common celiac associated genes. If you do come back negative on the gene test don't let that convince you not to do a gluten free trial when all your celiac related testing is done.
  14. ravenwoodglass
    Sounds like one and two are both jerks. If the first doctor diagnosed you and you just want follow up blood work to see if your antibodies are down your regular GP can order those tests. It does take a bit of time to heal and if you have other intolerances that are slowing down that process there isn't anything the doctors can do to help figure them out...
  15. ravenwoodglass
    Sorry you are suffering so much. Call your doctor's office this morning and ask to speak to a nurse about what is going on with your symptoms. Your doctor may tell you to stop the challenge. Reactions after stopping gluten even for a short time and then adding it back in can be severe and are an important part of the diagnosis process. Your doctor may even...
  16. ravenwoodglass
    Sorry folks are putting you into such an uncomfortable position with everything with which you are having to deal with right now. Unless these folks are ones you live with the easiest thing (IMHO) might be just to say "thanks for trying to help. I will take that into consideration" and then change the subject. They may just be trying to be helpful but unfortunately...
  17. ravenwoodglass
    It feels wonderful to not be in pain every day. I do still have a lot of damage that came about because of the long time it took for me to be diagnosed and it did take years to get to the point where I could live a semi-normal life. However it also makes me a bit sad when I think of all I missed out on with raising my children. My poor kids grew up with a...
  18. ravenwoodglass
    It could be. You may want to ask her ped to do a celiac panel on her or make an appointment with a derm to biopsy the skin next to the rash to look for DH.
  19. ravenwoodglass
    Welcome to the board. Your story is quite familiar to many of us. Keep on the gluten until your endo is done. After that is done you can go gluten free as long as no more celiac testing is needed. It isn't unusual for symptoms to become worse when you have been gluten free for even a short time and then add it back into your diet. No matter what the test...
  20. ravenwoodglass
    Can you get your doctor to order a complete celiac panel? That would be the first thing I would do if you are reluctant to have another endoscopy. Get the panel before you go gluten free as if you go gluten free first the panel will come back a false negative. After all your testing is finished for celiac that you choose to do then do give the diet a good...
  21. ravenwoodglass
    Gene testing can not fully rule celiac in or out. There are folks with the 2 most common genes who don't have celiac and folks without those genes that do. It doesn't look like your doctor did a full celiac panel on you. Did they test for your total IGA? If you have low IGA then any IGA testing is worthless. If your testing is finished for celiac then your...
  22. ravenwoodglass
    The best person to ask that question would be a pharmacist. IMHO you are going to be best off getting the sublingual. Fortunately they are not real pricey. You can continue to take the B Complex with the sublingual as B12 is a water soluable vitamin so if you do have excess from the vitamins you will just pee it out.
  23. ravenwoodglass
    Be sure to mention that you think you may have DH. If you don't have any active lesions some will agree to fit you into their schedule to biopsy when you do. Ask the doctor how they do the biopsy. If they biopsy the lesion they are clueless about DH as they need to biopsy next to an active lesion not on it. Special testing needs to be done at the lab so if...
  24. ravenwoodglass
    The gene test can backfire for some of us. At present they only test for the two most common genes but there are diagnosed celiacs who don't carry either gene. I am one of them. You mention a rash. Have you had a derm biopsy looking for DH? Sorry if you already addressed this as I don't have time before work to read back through the whole thread. A diagnosis...
  25. ravenwoodglass
    If the store is very open I could see how flour could float into and contaminate the meat. It is too bad the HQ can't bother to at least try to educate the workers. At my local Wegmans I went to buy some fresh shrimp one day and found it beside items that were breaded. One short polite conversation with the meat dept manager and the next time I went in the...
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