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ravenwoodglass

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Latest Celiac Disease News & Research:

Everything posted by ravenwoodglass

  1. ravenwoodglass
    If you are gluten free your blood test will come out negative whether you are celiac or not. In addition there are now 7 more genes that have been found that are associated with celiac. Gene knowledge is in it's infancy and in the case of not having DQ2 or DQ8 there are celiacs who are firmly diagnosed who don't have either.
  2. ravenwoodglass
    Have you tried eliminating dairy and/or soy? Could you have some gluten sneaking in somewhere in your toiletries or some place else? Could something you use have changed formulation? Generic meds would be something to check as well as stuff you eat. It sounds like your doctor has a good plan for eliminating some of the more serious causes. I hope this...
  3. ravenwoodglass
    To me they are. As stated your tests were certain to be negative if you only ate gluten for a week or two before them. Even on a full gluten diet there is still a risk of a false negative. I am glad to hear that you are going to go back to the diet. It sounds like it did help you a lot. The advice you got about the sublingual B12 is good advice, it...
  4. ravenwoodglass
    If the glucose says it is derived from wheat leave it alone. If you have doubts about any product the best way to find out is to call the company and ask if there are any wheat, rye, barley or oat derived ingredients in the products. I have found it is best not to just ask if it is gluten free as in some areas the level of gluten allowed varies and some...
  5. ravenwoodglass
    Another thing to look into is art and craft supplies, things like glues and paint, clays etc. Pet foods are also another source of contamination. Airborne gluten is usually only a concern with things like flour in baking, that can take up to 2 days to settle. Has the school been notified about the celiac so the teachers can do all they can to keep them...
  6. ravenwoodglass
    The reason he most likely was sicker was because the diet was wheat free and not gluten free. You eliminated enough gluten to make him more reactive to the smaller amounts he was getting. Once the home is gluten free and you get proficient in finding hidden gluten you will find he improves. You have found a great place to learn the ins and outs of...
  7. ravenwoodglass
    Celiac disease can cause lesions in the brain that doctors call UBO's (unidentified bright objects). These lesions are very similar to the lesions that are found with MS but are not located in the same areas. If you put celiac and UBOs into a search engine you may be able to find more info on this. When I was at my sickest I was thought to have MS, they...
  8. ravenwoodglass
    My presentations from childhood until after I had my first child were neuro and skin. After I had my second child was when I went from occasional tummy problems to it being a daily and then nightly occurance. Most of my neuro issues did heal. I still suffer from ataxia but I can now walk unaided, something I couldn't do for years. I lost my reflexes...
  9. ravenwoodglass
    You can't. What you can do is to educate her about the issues she will be facing as she matures. Educate her honestly as you would about birth control. Give her all the tools she needs to make an informed decision and trust her to make it. As to doorknobs and such I personally don't worry about it but I do make sure that I rinse or wash my hands before...
  10. ravenwoodglass
    I think one of the things that bothers me most is that there is a lot of research out there that is valid and way ahead of the research here in the US when it comes to celaic. But doctors here in the US seem clueless that it even exists. The reason in my opinion is that it is not controlled by drugs. We are very much a pharmacopic society we want instant...
  11. ravenwoodglass
    I had to laugh when I saw this, cause I used to eat dog biscuits to gross out my twin brother when we were really little. Anyhow Yes this could be making her sick. Try some of the grain free foods that are available, Innova Evo, Orgins are two. My pets really benefited from the switch to grain free foods. No more smelly dog toots at this house.
  12. ravenwoodglass
    Ask your dentist to check into remineralizing agents. In the meantime make sure you are getting enough calcium and other minerals. Be careful of your teeth, that kind of goes without saying. My DS broke a tooth once with a gummy worm. Just did the bite and stretch with his front teeth and one broke right in half. Don't do stuff like that. If you do...
  13. ravenwoodglass
    Sometimes it is not our diagnosis but our recovery that makes a believer out of folks. That was how it worked with my family. I hope you have a good visit with your brother in law and the rest of the family.
  14. ravenwoodglass
    I would print out some info on celiac from perhaps the NIH, here's a link to their awareness campaign homepage Open Original Shared Link in addition I would also eat before I went. If she does not take this seriously you will get sick and it is just not worth it. Perhaps bring a safe salad or a treat from home and sit with the family at the table...
  15. ravenwoodglass
    Your regular doctor can run a celiac panel, that should be your first step. If you have an active rash your dermatologist can biopsy the area NEXT to the rash to look for the antibodies. Here is a link to the National Institute of Health which will tell you how the biopsy needs to be done, if your doctor starts to biopsy the rash itself hand him a printout...
  16. ravenwoodglass
    Your DH is definately a keeper. It sounds like you have had really good results from the diet and that he has certainly noticed. That is a good thing. Celiac is genetic so your DD got it from somewhere. If you want to pursue testing do go back on a full gluten diet for at least 3 months before you get any testing done. If you go that route you may find...
  17. ravenwoodglass
    IMHO it is likely the vision issue is from something else entirely. Have you seen the eye doctor yet?
  18. ravenwoodglass
    This is true for many of us but not for all. The best way for a person to know if they will react is to not consume gluten distilled grains in alcohol or vinegar while healing and then challenge it as you would any suspect item. The blanket statement that these are safe for all is as true as the statement that only DQ2 or DQ8 are the only genes. There...
  19. ravenwoodglass
    I can't say for sure and for positive but I am supersensitive and I have used Secret for years with no issues. Suave is one company that will clearly label gluten ingredients.
  20. ravenwoodglass
    You should call your GI's office and ask them about it.
  21. ravenwoodglass
    I would follow up, there are a lot of causes for an elevation in the total IGA and perhaps a phone call to your peds office might help ease your mind. Express your concerns to a nurse. Your doctor may plan on just retesting in a couple of months to see if it has gone down.
  22. ravenwoodglass
    You might want to take the phone number of the company that makes the item and call them. If your purchasing in a health food store often the clerk can call them right there.
  23. ravenwoodglass
    For my family it was not my diagnosis but my recovery that encouraged them to get tested. Even after my diagnosis by my allegist and then having it confirmed by my GI only my DD took it seriously. Even then it wasn't until after I could walk almost normally and my DD was no longer being woken up by my violent every night bathroom excursions and my oozing...
  24. ravenwoodglass
    Have you evaluated your toiletries for gluten? If not please do so. Drink lots of water and take the supplement advice. Your skin should improve but it does take a little bit of time.
  25. ravenwoodglass
    The elevated Total IGA should be investigated. It may not be of a concern but it should not be blown off. Ask your ped and also consult a GI about it. If they haven't run stool testing for microbes, infectious agents etc. they most likely will.
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