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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    You are in my thoughts and prayers. I hope the biopsy report is negative. Please keep us posted on how you are doing.
  2. ravenwoodglass
    If you call 1-800-WEGMANS they will be happy to tell you if these are safe or not. One thing to keep in mind is the CC issue but that said wegmans is very celiac savvy and the rep will most likely be able to tell you if CC is a big concern.
  3. ravenwoodglass
    One other thing to consider if you are still getting ill with dairy even with a lactaid product is that you may be sensitive to the milk protein in the dairy products rather than the milk sugar in them. If your problem with dairy is casien and not lactose the lactaid pills are not going to help.
  4. ravenwoodglass
    This is soooo very important I thought it needed to be said again. In addition to reading labels you also need to be wary of the words 'natural flavors' barley can and is hidden in there in many items and will not need to be disclosed. The Rice Dream is a great example of that. When you see natural flavors a call to the company is in order.
  5. ravenwoodglass
    I am going to agree with the others who mentioned the soy. It is not unusual for us to have a problem with it. For some that sensitivity will resolve after we have had some time to heal. For others it may be permanent. I am going to suggest the Ener-g Wylde pretzels, they have no soy and taste great. Glutino has also come out with some soy-free crackers...
  6. ravenwoodglass
    I would not mention it to the friend or her parents unless it happens on a regular basis. Your DD learned a hard lesson with that one little bite. It was an important one so don't be too hard on her. The one who ultimately is going to have to keep her safe is her. This one incident and her reaction is going to go a long way to helping her resist other...
  7. ravenwoodglass
    You have a great doctor there. You have been diagnosed and now you can start healing. You found the right place for any guidance and support you may need. The Celiac Sprue Association is also a good source for a starting point on the diet. I really like that they give a starting diet and an 'expanding' one for after you heal. Here is a link. Open...
  8. ravenwoodglass
    It won't do any harm to have another path look at the slides. You don't need the doctors permission to eat gluten free. You do need to give it more than a week. You need to do it strictly for at least a couple of months. It is a good idea to go dairy free as well. You have nothing to lose at this point.
  9. ravenwoodglass
    I am glad you are now home and recovering. I know how painful an attack of diverticulitis can be and I hope you continue to improve and feel great soon.
  10. ravenwoodglass
    I was firmly diagnosed celiac in 2002. I have had DH since childhood. I had a fantastic resolution of a myriad of health issues, most autoimmune related. I didn't have my gene test done until I had been gluten-free for almost 5 years. By US gene standards I could never develop celiac because I don't have the genes. In other countries I would have been...
  11. ravenwoodglass
    Thanks for posting this. I have seen the relationship in my own body and in my remission from many autoimmune mediated issues. In my case gluten free was the real key, not multiple drugs for minimal relief. I do so hope the medical community wakes up soon.
  12. ravenwoodglass
    My first question to you would be - How long have you been gluten free? And have you had any accidental glutening during that time? For some of us withdrawl is a very real aspect of starting the gluten free diet. That could be what you are experiencing and it will lift. Also to try and improve you energy levels and also your mood you should take a sublingual...
  13. ravenwoodglass
    I agree with you completely. I get so frustrated when I see stuff about the supposed false postives with so many diseases that are autoimmune related and quite possibly directly related for many to gluten injestion. But hey if they actually diagnosed these folks and had them on the diet and the disorders go into remission then they won't have a patient...
  14. ravenwoodglass
    Can you possibly guide this woman here and through some posts? There are some oldtimers like myself who were close to death when diagnosed and have had an amazing recovery from a lot of their issues. While it is true that for some of us not all the damage can be reversed we will find an incredible resolution and possible remission of problems that we never...
  15. ravenwoodglass
    I hope everything goes well and that they are able to feed you safely. I have a history of seizures that I was lucky and turned out to be gluten related. Please be really careful with what they feed you. It would be a shame to have everything your going to be doing negated by them glutening you.
  16. ravenwoodglass
    It does sound like DH. If it is you will find that it does clear up gluten free. You should see a decrease in the amount of NEW lesions pretty soon although it can take up to 3 months for the ones you have presently to heal completely. However the antibodies will remain in the skin for up to 2 years before they can be completely gotten rid of by your body...
  17. ravenwoodglass
    Please don't go off just the gene tests. I was diagnosed about 5 years before I had gene testing done. It was clear from my recovery and the remission of my autoimmune disorders that I was a celiac. It took me a long time to get to that point and a lot of serious damage because I don't show up on blood tests so was thought not to have celiac. I was a...
  18. ravenwoodglass
    Thanks for posting. I can be amazing how far back we can come from being as sick as we were. Physically I feel younger at 50 than I did at 20. Well worth the initial adjustment. Glad you are doing better. It sounds like things are very busy right now.
  19. ravenwoodglass
    Did you pharm check the gluten statis of the meds? Were they generics? There are no labeling regs with meds and supplements and your doctor is not going to know if they are gluten-free. Even the pharm is not going to know without calling the company. If your pharm gave you the script sheet that comes with the meds it should have the phone number for the...
  20. ravenwoodglass
    I bolded the most important part of your post. You have done the most reliable test there is. You went gluten-free and you saw an "overwhelming response" for the better. That is diagnostic.
  21. ravenwoodglass
    First off it really doesn't matter whether they deem her gluten intolerant or celiac, gluten is still poison to her. If she has the neuro toxic impact more than GI impact at this point she may not get the celiac label but that won't mean that it definately is not in her future. I suffered from neuro impact from the age of four. I reached a point before...
  22. ravenwoodglass
    Before you do this to your child I would ask the doctor just what he is trying to accomplish. It sounds like he is making her test subject. He isn't in the process of writing some paper is he? The choice is yours but I would never take that risk with her. One thing I would agree to would be an MRI scan of her brain. Often white lesions can be seen that...
  23. ravenwoodglass
    I have it. When I was diagnosed the diverticuli were the worst the doctor had ever seen and went throughout my entire intestines rather than just the usual left side. I get my fiber from fruits and veggies mostly, sweet potatoes are a great regulator, and gluten free helped a great deal with this condition for me. I had a scope at 5 years gluten free...
  24. ravenwoodglass
    There is really a surprising amount of stuff you can still eat, although it may not seem like it at the moment. Fruits and veggies, Bakery on Main makes great granola, rice or hemp milk are good, there are snack foods and stuff although a lot of specialty gluten-free baked goods use soy but Kinnickinnick has some great breads, premade pizza shells that can...
  25. ravenwoodglass
    Cami these kids definately sound like they might need the diet. IMHO your ped is less than ideal. I was going to use another id___ word there but decided not to be rude. You do need to be aware that the level of false negative blood tests in young children is very high. In countries that routinely test they do it at 4 and again at puberty. I would still...
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