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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Welcome to the board. I think you will find there is a lot of support and info here. Have you checked to see if there is a celiac support group close to you? That may help a bit. It can be hard to get used to the gluten-free life and for many in the beginning there is a bit of withdrawl and in a sense a greiving process that also comes into play. Rarely...
  2. ravenwoodglass
    Although wheat and barley grass are considered by many to be gluten free there are quite a few of us that will react to them. You might want to post a query under products and get some other opinions on it. The alfalfa grass would not be an issue it was just in the middle of the ingredient list. Have you ever been evaluated by a neurologist? Ataxia is...
  3. ravenwoodglass
    When vitamin E is derived from wheat it is a problem for many of us. It is in an awful lot of cosmetics and personal care products and they don't have to tell you on the label that it is wheat derived. It effects us and not non-celiacs because it is derived from wheat. Some companies will use soy to produce the vitamin E that they put in products and unless...
  4. ravenwoodglass
    Find another pharmacist. Yours is not doing his job. If any of those meds are generic they can change binders at will and those need to be checked with each refill.
  5. ravenwoodglass
    The title was a quote "Doctors are just the same as lawyers; the only difference is that lawyers merely rob you, whereas doctors rob you and kill you too." Chekhov. There was nothing wrong with it at all, IMHO it did not need your changes.
  6. ravenwoodglass
    I agree with this wholeheartedly. In all my years of illness the only one who really listened to me was a PA, unfortuneately it was at a clinic where you couldn't request a specific person. I was talking to my DD, who recently got her RN, about my struggles trying to find a doctor. One of the things she said was to look for a NP instead as they usually...
  7. ravenwoodglass
    Do any of your hair care products have vitamin E? It is not uncommon for hair products to contain it and for many of us wheat derived Vitamin E can cause an issue but most companies will say it is gluten free.
  8. ravenwoodglass
    Your body has simply reached the point where the antibody reaction has become strong enough to effect. Your skin issues really do seem to be DH, the most clearly DH of anyone that I have seen here, IMHO. I can't answer the query about celiac savvy derms in your area, I am on the other side of the country. Perhaps if you start a topic asking that someone...
  9. ravenwoodglass
    Most drywall is not gluten free. The dust gets into everything and into the air. When you inhale the dust or if you have it on your hands and then touch a mucous membrane, like rubbing your eyes or nose, you are getting glutened. It does sound very much like you have DH and your body is telling you to let someone else do that drywall work. If the work...
  10. ravenwoodglass
    This was an easy mystery to solve, before you look for other issues you need to realize that Progreens is one of those items that is thought to be gluten free but really isn't. Stop taking this and I bet those dizzy spells will soon be gone. Here is part of the ingredient list that is really significant: Wheat Grass Powder 350 mg ** ...
  11. ravenwoodglass
    From this you are actually quite symtomatic. You may not have daily D, yet, but your system definately seems to be being impacted. As to the B12 levels, those can look normal for a long time after you stop being able to actually use the vitamin in your system. Sometimes it is helpful to look at the test ranges over time. Many times we will see the number...
  12. ravenwoodglass
    You could ask you PCP or you could ask the neuro. Your doctor is right that a food allergy is not likely to be the cause but an intolerance could be. They are totally different animals. Where allergies are a histamine reaction intolerances are an antibody reaction. You could try calling your PCP and seeing if he will order the panel making sure he does...
  13. ravenwoodglass
    Make sure you check to make sure they still are gluten-free. At the time I used it all were except for the chocolate malt but that may have changed.
  14. ravenwoodglass
    Don one of the hallmarks of DH is that it usually has a bilateral presentation. I would imagine it was not the sodium and salts in the soy sauce and broths that are getting you but the wheat in them. Be sure to check out the link to the NIH site, too many derms don't do the biopsy correctly.
  15. ravenwoodglass
    Yes it does sound like you are one of us. What you are doing is a gluten challenge whenever you go out to eat. And your body does not like it.
  16. ravenwoodglass
    Yes it is possible that you have celiac. There are times when neurological issues are one of the first presentations. I had neuro issues from childhood with just what I thought were 'normal' tummy issues until I was in my late 30's. Then the gut stuff hit full force. Have you seen a neurologist? There are sometimes things that can be found on MRI's...
  17. ravenwoodglass
    Actually false positives ae not really all that common. Falso negatives are another story. They happen as much as 30% of the time. False negatives on biopsies are unfortunately common also. However your body knows. If you have good resolution of problems when gluten free and then become sick when you add gluten back in that is also part of the diagnostic...
  18. ravenwoodglass
    I have never heard of the idea that inheriting the same gene from both sides contributes to a frequency in false negatives. I would be very interested in more info on this, for reasons obvious in my signature. Do you have any links to this? I do know that when we have double copies of the same gene the presentation seems to be more severe. As to...
  19. ravenwoodglass
    It is and enjoy. I love making the Jello Cheesecake, mix jello packet with cream cheese and cool whip and spread on a gluten-free cookie crumb crust. Yummy.
  20. ravenwoodglass
    Cleanse are not really all that safe for us. Have you thought of doing a simple fast? A one to three day fast with juice and broth would be much safer.
  21. ravenwoodglass
    If you are still having issues with those make sure you are taking a sublingual B12 along with a good multi that also has the B's. Those guys really hurt and are often associated with a B defiecency.
  22. ravenwoodglass
    Me too. By the last 10 years before I was diagnosed I like Patti stopped eating unless I was home for the night. I would sometimes take Carnation Instant breakfast, which I found out later was gluten-free, and mix it with my coffee in the morning just to get some nutrition to be able to work. It was the only thing I knew would not upset my stomach more...
  23. ravenwoodglass
    I use Orijen which is totally grain free and have also used Innova Evo. My pets seem to thrive on the grain free foods and even though they do seem expensive at first I've found they don't eat as much. It seems to satisfy their hunger better.
  24. ravenwoodglass
    The NIH estimates that 30% of us will show negative on a blood panel. My doctors relied on the panel for years while my health went rapidly downhill. None even told me what 'sprue' was or to try the diet. If your dietary results are great your body is telling you what you need to know.
  25. ravenwoodglass
    You need to go back to the derm and have them do another biopsy the right way. Here is a link to the NIH that you can print out. Open Original Shared Link "A skin biopsy is the key tool in confirming a diagnosis of DH. Doctors take a skin sample from the area next to a lesion and, using a fluorescent dye that highlights antibodies, look for the presence...
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