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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Yes many of us have had symptoms that come and go for a while before they become a daily struggle. I have been symptomatic since childhood but it wasn't until the last 10 years prediagnosis that they became daily and neverending. I should add that if you are IGA deficient that can cause a false negative on the blood tests.
  2. ravenwoodglass
    I could be wrong but the symptoms I bolded are the symptoms I get from a glutening. Is there any chance you may have been glutened? Gluten can be sneaky, are you eating many processed foods? Have you eliminated gluten from your toiletries and checked all your meds? Are you doing baking with gluten flours for others? Have you replaced your toaster, scratched...
  3. ravenwoodglass
    Between the villi blunting and 'AGA IgG.....26.3 reference <10' I would think that would be enough for a diagnosis. I would consult with a doctor who actually knows something about celiac for a second opinion. Or you could just start the diet.
  4. ravenwoodglass
    Many of the posts on this thread were pretty old. I would double check with the company in case some of the products have changed.
  5. ravenwoodglass
    How are you feeling? Are you still having symptoms? If you are have you tried tried eliminating dairy and soy?
  6. ravenwoodglass
    For me the pepto cured the problem, I only needed to take it for about a week or two. I took it at the slightest hint of pain after the first time I took it, right after the endo. The only times I have taken it since is the few times I have been glutened or soyed.
  7. ravenwoodglass
    I would think also that you are likely still getting gluten somewhere. I don't know why the doctor would think lymphoma because your villi are not healing, he should be thinking that you either are still getting gluten or perhaps are dealing with a rare case of refactory sprue. Check all your toiletries, shampoos, makeup, pet foods, pet litters, all script...
  8. ravenwoodglass
    I would suggest dropping all the 'remedies' you are taking. Then after a few days add them back one at a time. Have you tried Pepto Bismal or has your GI reccommended anything? If you haven't mentioned this to the doctor who did the endo you should do so.
  9. ravenwoodglass
    I would contact the dean's office, they should be able to guide you. My daughter knew when she applied, her entrance essay was even on dealing with celiac, so the college was all ready with her room in senior housing. Chances are the college is not going to be able to accomodate her needs at the dining hall so she will need to be able to store and cook...
  10. ravenwoodglass
    NO. Gene testing is still new. In the US they commonly only check for 2 of the 9 genes known to be associated with celiac. The gene tests can be helpful but they are not diagnostic. Have you had a celiac panel done or an endoscopy? Those should be done before trying the diet. Also since both the panel and the endo have high rates of false negatives a strict...
  11. ravenwoodglass
    How long were you back on a gluten diet? You needed to be back on gluten for about 3 months and consuming it multiple times a day. How did your body react to adding gluten back in for the challenge? How many biopsies did the doctor take, it should have been at least 5 or 6. Damage to the villi can only be seen with the biopsies and even then damage can be...
  12. ravenwoodglass
    If your daughter has a formal diagnosis the residence hall needs to do one of two things, either make sure they can safely feed her or let her opt out of the meal plan and give her a way to cook for herself. For my DD that meant moving into senior housing her freshman year so she would have a kitchenette. Your school might allow her a frig and microwave in...
  13. ravenwoodglass
    It is wise to drop soy for now but..... You are new to the diet. What did your friend do to prevent CC while cooking for you? If they eat gluten at the house precautions need to be taken. You could have been glutened by crumbs that were in the butter or on a counter, a cutting board that had had gluten ingredients cut on it, a colander that was used to rinse...
  14. ravenwoodglass
    The disclaimer is for CC not for the food. A food that is naturally gluten free can be made not so by the processing. They are being honest in the labeling of the ingredients they are simply informing us of the chance of CC from the plant the item is processed in.
  15. ravenwoodglass
    The disclaimer isn't really for the food it is for the plant it was processed in. Walmart gets it's products from all over the world. They can't possibly know for sure that the plant in, for example China, is doing what need to done to clean it's lines. It is IMHO better for them to acknowledge this honestly rather than just saying 'gluten free' or 'naturally...
  16. ravenwoodglass
    Thanks for the link I will check it out. So far it's not sounding like something I want to eat.
  17. ravenwoodglass
    Your not alone in that. I am glad you have been able to finally figure out what is going on. Maybe after your problems have been resolved for a while your doctor might wake up. I am glad your feeling better and think your making the right choice to refuse the challenge. I let mine talk me into one and the results were pretty severe.
  18. ravenwoodglass
    Progresso has always been really good at labeling. If the older cans without the gluten-free label dont' have wheat, rye or barley listed they are okay also. The gluten-free label is something new that they have started doing.
  19. ravenwoodglass
    I will be contacting Walmart and thanking them for their honesty in labeling. I appretiate a company that discloses CC risk and lets me take responsibility for whether a product is safe for me to consume based on honest labeling. I would much prefer the kind of labeling Walmart does to the 'hidden risks' that are present with companies like Frito Lay and...
  20. ravenwoodglass
    Exactly. There are countless companies that don't label CC risk, one chip company and a company that makes rice milk come right to mind. If we attack the companies that do label CC risk we are IMHO going after the wrong folks and risking a step backwards.
  21. ravenwoodglass
    We likely can soon expect the gluten free label to disappear from Walmart Brand foods or worse they will drop the CC warning as they are not required to have one in the first place. IMHO this company was acting responsibly about possible CC issues. They were letting us know and make an informed choice. Many of their items that carry the 'processed in the...
  22. ravenwoodglass
    I hadn't thought about it but mine have gone away so perhaps there was an association. I used to have them on my face but they have been gone for a long time now. I wonder if they had something to do with all the inflammation?
  23. ravenwoodglass
    With a postive blood test and resolution of symptoms gluten free chances are really, really good that you are one of us. Now for the bad news, if you want to see a GI doctor you need to get back on gluten ASAP. The GI doctor will want to do an endo and you need to be on gluten for any chance of it coming in with an accurate result. Even on a full gluten diet...
  24. ravenwoodglass
    Have you had any skin issues before? Even if not so bad? If so do you use iodized salt? If you do try a non-iodized for a bit and see if it helps.
  25. ravenwoodglass
    If you do find you want a doctor derived diagnosis at this point you will need to go back on a full gluten diet for about 3 months first. You have no chance of a positive blood test or biopsy if you have been gluten free for a while. If it is obvious that gluten is an issue you need to get as strict as you possibly can. If your issues do not clear up then...
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