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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Hopefully you will be able to get the referral with no problems. They can be helpful with nutrient and calorie issues but many don't know a lot about gluten. It sounds like you have a good plan and I hope the biopsy shows conclusively that you are celiac. It seems funny to say you want someones test to be positive but with the positive blood work and all...
  2. ravenwoodglass
    You may unfortunately have to forgo the alcohol. You may simply not have healed enough yet for your system to tolerate it. Something else that may factor in... Do you drink at all at home? If you do say have a couple glasses of wine after dinner get as sick as you do when you drink out in a bar? If you can drink and not react at home it may be the mixers...
  3. ravenwoodglass

    ARCHIVED Lupus

    ravenwoodglass replied to Salax's topic in Related Issues & Disorders

    Gosh yes ask for the test. If you can swing it get yourself into the doctor so they can see that rash. If you have to wait take a picture as the rash can come and go to some extent as the disease flares and then resolves. I have many of the same problems going on now, except without the tummy problems and with severe joint and muscle pain. I have a lab slip...
  4. ravenwoodglass
    I hate to say it but too many times a visit with a dietian for the purpose of celiac education is less than worthless. A great deal can be learned here and at other celiac specific sites. One thing I want to stress to you is to mention that your getting up sick at night, make really sure the doctor hears this. I suffered for years and was told it was...
  5. ravenwoodglass
    That sounds more like hives. Since they are there when you wake have you tried changing detergents and fabric softeners in case you are reacting to something in them? That would be my first step. DH usually has small blisters and the itching doesn't let up during the day. At times the blisters are broken as they form from folks scratching them so they might...
  6. ravenwoodglass
    This will be great IF they have a dedicated facility. Not that I am not happy with Pamela's mix, which I think could most likely sub for the bisquick in most recipes, but perhaps the gluten-free Bisquick might be a little less pricey.
  7. ravenwoodglass
    The genetic test can satisfy curiosity but if they only test for DQ2 and DQ8 you could end up thinking that celiac is not a possibility. There are 7 additional celiac related genes but most doctors don't check for them. I had my genes tested because my biopsy and blood positive daughter had her diagnosis taken away after she was gene tested. That prompted...
  8. ravenwoodglass
    Your total or serum IGA and the IGA are different tests. Your total IGA is usually a blood test. The stool IGA is a celiac screening test as far as I know unless you see the words 'total' in front of it. It was the test used, blood wise, before the TTG came into use. I wasn't aware that they could do a total IGA from stool screening hence the confusion.
  9. ravenwoodglass
    If your IGA is going up to that great of an extent you are getting a good dose of gluten somewhere. Could the probiotics or any of the other meds you have been on be a source of CC?
  10. ravenwoodglass
    The key to your continued symptoms is likley what I have bolded. You should become strict with the diet and likely that will be the end of your issues. If after a couple months of strict gluten free living, and there is much more to it than just the labels on your food, then perhaps look for other issues. For now go with pure unprocessed foods, make sure...
  11. ravenwoodglass
    You DO HAVE a diagnosis. It was 'early celiac' instead of what was likely 'partially healed celiac' but you do have a definate diagnosis. I would accept it especially with a mother who is diagnosed.
  12. ravenwoodglass
    I would consider myself diagnosed rather than continuing to damage yourself with months more on the diet to make the doctor happy. Your doctor appears to be one who wants your villi totally destroyed before he will give an 'official' diagnosis. You had 9 months off gluten and healed. I am willing to bet the last 3 months have not been pleasent. It is of course...
  13. ravenwoodglass
    Another possibility is that you are intolerant to soy. That pizza is loaded with it. I mention this because it took me literally years to realize that many of the gluten-free foods that I thought had CC'd me had soy and it wasn't the CC that was an issue it was my intolerance to soy.
  14. ravenwoodglass
    If you are just coming off of the meds you may find when you stop them things get better. Also you mention being lactose intolerant, most of the probiotics I have checked have casien in some form, do yours? I would drop them for a bit and see if that makes a difference.
  15. ravenwoodglass
    Make sure they note this in your chart and remind them to check the meds at each script.
  16. ravenwoodglass
    Good point. Enterolab can test for antibodies even if you are gluten light or gluten free for a short time. You may want to check them out. They do not diagnose celiac but they can tell you if you are forming antibodies to gluten which would mean your body doesn't want it.
  17. ravenwoodglass
    What a great thing to do. Hopefully lots of doctors and other medical professionals will read it. I have seen a great deal of improvement and I hope you do also.
  18. ravenwoodglass
    It does sound like you could be one of us. You should ask your doctor for a full celiac panel. If they are going to do an endo you need to stay on gluten until those tests are done. After testing is finished then give the diet a good strict try no matter what the results are.
  19. ravenwoodglass
    I was sick contantly for years catching every bug that went around. I literally have not even had a cold since I was diagnosed 8 years ago. I don't miss them. Hopefully the same will happen for you.
  20. ravenwoodglass
    Thanks. I don't think I would have made it to diagnosis if I didn't have kids. My before sleep mantra for a long time was 'Tommorrow will be better' and one day it was. There are so many like me. One thing this board has shown me is that I am certainly far from alone. Unfortunately.
  21. ravenwoodglass
    Celiac is strongly genetic and I would bet that there are folks in your family that also have it if you do. They just don't know it and no one has tested them for it since we don't screen for it here in the US. Would save millions of health care dollars if we did. However Celiac isn't inherited like most genetic defects. It is neither recessive or dominant...
  22. ravenwoodglass
    I know your worried about it but you would really be surprised what we can do when we have to as Moms. You've gotten some great advice already so I don't have too much to add other than to say that things do get easier with time. It sounds like your doing all the right things. As a former military wife myself I know that you likely have a lot of support available...
  23. ravenwoodglass
    Welcome back. Glad to hear things are going good for you now. It can be tough sometimes but it sounds like you have gotten through a rough spot and come out on top. Hope all continues to go well.
  24. ravenwoodglass
    Can you call the company and ask? The ingredients that would be suspect would be the ones I bolded. The white vinegar is only a concern for those of us who react to gluten distilled grains, not all of us do.
  25. ravenwoodglass
    You need to be back on gluten for the same length of time for the blood test as you do for the endo. Even then false negatives are all too common. Sounds like your body is giving you the answer. The next few days may be rough. Whether you want to continue for another 2 or 3 months is up to you.
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