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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Just because you go to a gastro doesn't mean you are going to have the same outcome as your Mom. I would go to the gastro or your regular doctor, bring the gene test results with you and tell them you want a celiac panel done. The scope that is done to look for celiac is an endoscopy, they go through your mouth and it is a simple test done with you asleep...
  2. ravenwoodglass
    It can take awhile to heal and start absorbing nutrients normally again. Perhaps he needs to keep up the iron infusions for a bit? He may have also gotten glutened but usually we will see a reoccurance of some of the issues that we had before we went gluten free like rashes coming back, bloating, stomach pain, D or C etc. I hope things get figured out and...
  3. ravenwoodglass
    I would wait on trying any oats for now. Wait until she is fully healed and then go with certified gluten free oats. Not all of us tolerate oats so when you do add them back in watch for a reaction. Oats are often cross contaminated in the field and in the plant. I would not advise giving her Quaker brand. In the meantime if she likes a hot cereal Cream of...
  4. ravenwoodglass
    Welcome to the board. You story isn't unusual which is why we stress so hard to try the diet when testing is done no matter what the results are. While I am not happy that you have to deal with this I am happy you are finally diagnosed. Do read as much here as you can and ask any questions you need to. Check all supplements and drugs and be strict with the...
  5. ravenwoodglass
    Hopefully the doctor tested you for celiac before he had you start the diet. If your gluten free the tests will be a false negative. You can have a false negative even on a full gluten diet though. It sounds like he is checking for all the likely issues. Yes it can be depressing when you feel so horrible and all tests come back negative but excluding possible...
  6. ravenwoodglass
    Thank you. I also appretiate all the other folks here both newbies and oldtimers who lend so much support to each other. This disease isn't easy and too many have lost hope of ever recovering by the time they are diagnosed. One thing that gives me some hope is that we seem to have many younger members now who are diagnosed sooner than when I first joined...
  7. ravenwoodglass
    Yea me too. I hope you are starting to get some relief. In my case some stuff was relieved sooner but the most noticeable relief was between 6 months and a year. Hang in there.
  8. ravenwoodglass
    I will pull the results in about 2 weeks since that is when I will be writing the paper. I will post the results but I will leave the poll active as long as folks are replying. I set the 6 month on the diet cut off because most of us have seen at least some relief of neuro symptoms by that time. It takes longer in most instances for relief for neuro symptoms...
  9. ravenwoodglass
    I am sorry but the malt does put the cereal into a no go for us.
  10. ravenwoodglass
    It is not uncommon for a woman to have celiac triggered by childbirth. Do ask your doctor to do a celiac panel and if that is positive if you choose to get a scope done. After all your tests are done then give the diet a good strict try. False negatives are not uncommon but your body will know the answer. Do not go gluten free or gluten light until the tests...
  11. ravenwoodglass
    I don't use UDI's but the bread I do use is also frozen. I take out about 1/4 to 1/2 loaf and put it in the fridge to thaw if I am eating a lot of sandwiches or toast that week. If not I just thaw out what I am using right then by toasting or zap it in the microwave for a few seconds.
  12. ravenwoodglass
    Are you gluten free? IPA beers are not something we can tolerate we have to drink beer without barley malt. Redbridge, New Grist, Greens gluten-free etc. If your drinking them regularly, even just a couple a week, your keeping the antibodies active.
  13. ravenwoodglass
  14. ravenwoodglass
    That's good and that combined with having constipation and not Diarrhea should make you feel better about the possibility of Chrons. I hope the capsule endo has some answers for you. I think I remember you saying that HCL helped a bit, are you still taking it?
  15. ravenwoodglass
    Here are the symptoms for Chrons from Mayo Clinic since you don't have D or the other major symptoms I think it highly unlikely you have Chrons. The capsule endo will tell you for sure though. Open Original Shared Link â– Diarrhea. The inflammation that occurs in Crohn's disease causes cells in the affected areas of your intestine to secrete large amounts o...
  16. ravenwoodglass
    Go ahead and give it a try. If it works let us know as I don't know if we can vote again if we delete our vote and I would have checked that box also if I had thought to add it in the first place.
  17. ravenwoodglass
    Hydrolized vegetable protein if it is derived from wheat it must be labeled as from wheat either in the name itself ie. with (wheat) or in the allergen statement. I don't think it is made from rye or barley just mostly soy and perhaps sometimes wheat. The genetic tests can NOT exclude celiac. While most celiacs are DQ2 or DQ8 there are at least 9 other...
  18. ravenwoodglass
    Glad to hear you have gotten relief from the neuro issues. Yea neuros are pretty clueless in this country for the most part. My short term memory issues took a long time to improve and I am still not completely healed as far as that goes. Don't know if I ever will be but I am worlds better than I was. Hopefully things will continue to improve for you also...
  19. ravenwoodglass
    It is highly unlikely IMHO that you have Chrons. It would have been found on the colonoscopy.
  20. ravenwoodglass
    The fact that celiac is so underdiagnosed in this country is part of what makes folks think this is a fad. Testing is not very reliable with up to 30% of us showing up negative with blood tests and biopsy. You do sound like you are reacting to gluten. You should continue on a full gluten diet for the next month and then go to the doctor and ask for a blood...
  21. ravenwoodglass
    My intestines also get swollen. On a CT they were able to see the thickening of the intestinal walls. The pain I get from being glutened and pregluten free is indescribeable. The kind of pain where it is so bad you shake, get pale and feel like your going to pass out on the toilet. I was told by the doctor that did the preliminary diagnosis to never touch...
  22. ravenwoodglass
    I think Enterolab could be helpful. Enterolab does not diagnose celiac or gluten senstivity but they do look for the stool antibodies and test for more of the genes involved in the celiac spectrum than most labs do.
  23. ravenwoodglass
    That could be it also. I wonder if it might have something to do with damage to the nerves in the intestine causing the poor motility? It could have a combination of factors also. It seems quite a few of us have C for a bit when the disease first strikes. I had heavy nerve impact as a child, we know this from the loss of reflexes in my lower extremeties and...
  24. ravenwoodglass
    Thanks everyone. Yea doctors don't recognize the neuro impact that celiac has on us. I am finding quite a bit of research that has been done recently on this effect but most studies are done on small groups. We have such a large community that I was hoping to get lots of responses to help back up that research. Do feel free, those of you who haven't gotten...
  25. ravenwoodglass
    You know I had that effect also and so did my DD. I am going to try to add sleep irregularities to the poll. Don't know if I will figure out how to do but I will try. I do think that may be neuro related. Thanks for pointing that out to me. Edit- It worked.
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