Jump to content

ravenwoodglass

Advanced Members
 View Profile  See their activity

  • Posts

    14,675

  • Joined

  • Last visited

  • Days Won

    153

 Content Type 

Profiles

Forums

Events

Blogs

Latest Celiac Disease News & Research:

Everything posted by ravenwoodglass

  1. ravenwoodglass
    Nicole you may want to head over to the parents section of the board to ask about the school compliance issue. It may be possible that his ped may give the diagnosis based on dietary response if his improvement is good. The choice on whether to continue or do a trial on the diet is up to you. Will you do the diet anyway for a bit no matter what the GI...
  2. ravenwoodglass
    This stuff IMHO is great. It is soft and comfy. I haven't had any products long enough to know how well they hold up but for me this fiber is a winner for sheets and t-shirts.
  3. ravenwoodglass
    Glad to hear you are listening to your body. You should think about getting some sublingual B12, that should help a great deal with energy and other issues. So happy to hear you are on your way to recovery!
  4. ravenwoodglass
    I haven't laughed so hard in a long time. Thanks for posting the link
  5. ravenwoodglass
    Most likely they use barley malt in their 'flavors', because it is under a certain percentage of the ingredients and considered a flavoring agent they don't have to disclose it. We really need to contact the FDA often to let them know that we need clear labels. We need to know if an item is 'processed' to be gluten free or if it is really made from gluten...
  6. ravenwoodglass
    When you tested with Enterolab did you test for other intolerances as well? It might be worth doing if you haven't already. With him in preschool though I strongly suspect that he got a bit of CC somewhere. It is really easy to have happen at his age. There is so much we need to be careful of. Have you checked what soaps they are using at the school...
  7. ravenwoodglass
    Boy do those pictures bring back memories. Is your house gluten-free? Have you checked any meds he is on, even the ones that are topical or have been given for the rash? What does he play with? Does he use any play-doh, paints, glue or glue sticks? Do you have any pets that eat gluten containing food? Could someone have 'snuck' him a treat? Are you...
  8. ravenwoodglass
    They are a good company for labeling. Just be sure to read the label every time. The split pea used to be gluten free but they changed it and it got me cause I was so used to eating it I didn't look. The ingredients still looked safe but they had added a contains wheat warning. Although I was unhappy with the change at least they labeled it clearly.
  9. ravenwoodglass
    Yes it will make a difference. Blood testing is not a really great way of diagnosing us to begin with. To get the best chance of having a positive he really needs to continue on a full gluten diet until he has the blood drawn and, if you choose to do one, the biopsy. I should note that if he is already gluten free and has had some resolution of problems...
  10. ravenwoodglass
    Do make sure to do the blood test before you start the diet. False negatives are common even when on a full gluten diet. You may actually be surprised how quickly things change for you husband. My Aspie son now has made a great deal of progress that we wouldn't have seen otherwise. He also has lost all OCD features he had. My husband also could have...
  11. ravenwoodglass
    My gosh what is wrong with that doctor!!!!!!!! Please go with what your GPC has said, the scalloping is indicative of celaic as are the neuro issues. You are now doing a gluten challenge after a period in the gluten free diet in which you saw a resolution of your problems. Those problems are now coming back. You are celiac with neuro impact but your GI...
  12. ravenwoodglass
    I agree totally with this but my anger is more at the FDA that fails to regulate or require clear labeling on any meds. I have had some great pharmacists and I have had some that were so frustrated by this issue that they took it out on me. I fully understand their frustration as we deal with it every day. I usually ask for the data sheet and call myself...
  13. ravenwoodglass
    The diet is the truest test there is. Stick with it and welcome.
  14. ravenwoodglass
    Hi Sandpiper, Don't be afraid to PM me if you want or need to. You do that by clicking on my name near my avatar and a pull down tab will appear. There are a couple ways to get some good stuff to show him. Do a search here with the word neurological, there is a lot that will come up. You can also do a google search with the word neurological and celiac...
  15. ravenwoodglass
    I would be tempted to clean it really, really well with a scrubby and then try it. If your reactions are extreme and you don't want to take the risk then do replace it.
  16. ravenwoodglass
    Sounds like you got a 'winning' roll on the roulette wheel. I ate a lot of this companies food for the first couple of years and ran in to the same sort of thing. I now pretty much avoid their products because of the CC risk. Myself I don't like to play roulette and although the convience was great it just isn't worth the risk to me. I am just way to...
  17. ravenwoodglass
    Yes it can, although it sounds like you have had some indications for a while. Up to 30% of us show up negative on blood work. For some of us doing the diet and the results we see are the best indications of whether we need to be gluten free. Many of us have unexpected effects from the psychotropic drugs they throw at us but the diet can negate the need...
  18. ravenwoodglass
    Here you go. Open Original Shared Link There are others but this site has a good one.
  19. ravenwoodglass
    There is a correlation. It has been documented so if you google leukemia and celiac you will most likely have quite a bit pop up.
  20. ravenwoodglass
    Hi, I am the member I think the other poster was referring to. Do you remember what they called those lesions? Was it UBOs or unidentified bright objects? If so outside of the US those would be diagnostic by themselves of celiac disease with neurological involvement. He sounds a lot like me, including the over 10 years looking for a diagnosis. For me...
  21. ravenwoodglass
    I was given samples of this and three other drugs by my GI. I decided before I took any to try good ole' Pepto Bismal liquid. One dose took care of the pain. If you don't have any contraindications it might be worth a try.
  22. ravenwoodglass
    If he has a number of other indications of the disease then it could be associated. He should at least be tested but as mentioned the best way to know if the diet is needed and will help is to do it. Testing does miss a lot of us.
  23. ravenwoodglass
    I might think about sending copies of those letters to the FDA and the AMA also. If we all write to the heads of these organizations maybe someday something will be done. They need to understand these meds can be not just inconvient for us but also very dangerous to our physical and mental health.
  24. ravenwoodglass
    The sterling will be fine also. What is on the other side of the Tiffany charm? You might be able to have a jeweler engrave your info on the other side.
  25. ravenwoodglass
    The numbness and tingling was definately an issue for me. I even had carpal tunnel surgery but after diagnosis realized that it was actually parathesias. For me the numbness progressed from just feet and hands to legs and bowel and bladder issues. This actually took a very, very long time as I had nerve issues from childhood. B12 was quite helpful although...
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.