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ravenwoodglass

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by ravenwoodglass

  1. ravenwoodglass
    In addition to the sublingual B12 which is essential have you been eating a lot more soy than you did prediagnosis? I have gluten ataxia which had gotten much better gluten free but not resolved completely. After having some other problems crop up I got tested for soy intolerance. Postive results had me eliminating soy which I never consumed much of prediagnosis...
  2. ravenwoodglass
    If you can get you girl freind to pull her veggies out and then let yours cook a bit more, that may help. Watch your spices also, not all are gluten free, McCormick is a good safe brand but read labels on their mix packets. Also if your mostly vegetarian watch out for soy, some of us have problems with it. In addition if you haven't already you may want...
  3. ravenwoodglass
    This is good to know, Wegmans has the same policy. I found out when I noticed a large can of nuts had a circle G but the small cans didn't. I called to find out why and they said much the same thing Walmart did. The small cans were made in a different facility that had CC issue so the small cans were not labeled gluten-free even though they had the same...
  4. ravenwoodglass
    Sure does, what you describe here sounds like the bumps that covered my son's chest for almost all of his life. They were gone about 6 months after he went gluten-free and have never reappeared. As for your description of the lesions on your DD's back and forehead they sound just like the DH sores that I used to get as an adult. I was covered head to foot...
  5. ravenwoodglass
    If gluten came up as a delayed reaction under allergy testing that was diagnositic. If it was done by your allergist that is a valid diagnosis. I do not show up in blood work and when I had gotten to the point where I was almost dead an allergist finally found it with an elimination diet. I wish I had just stopped there but when he referred me to a GI...
  6. ravenwoodglass
    I was always thankful for a solid handrail, my arms used to do most of the work pulling me up the stairs. It makes me crazy too and not in the way all those doctors thought for so many years. It still seems like a miracle to me. I feel almost as good about being able to dance as I do about being able to read again. I found sublingual B12 to be invaluable...
  7. ravenwoodglass
    "I went gluten free for a while, then my doctor talked me out of it since my biopsy was negative. (Eating gluten at the time of my tests - went gluten free after that, then once all my results were back, about 2 months later, started on gluten again) " Did you get any relief from the diet? What happened when you added it back in? Any reaction even if...
  8. ravenwoodglass
    Do those hives have little blisters on top? Have you ever had DH? Could you have been suffering a severe glutening and not food poisoning? They most likely did testing for food poisoning, or at least they should have. If those came back negative they might assume it was 'all in your head' especially if you had some of the neurotoxic effects of gluten...
  9. ravenwoodglass
    I hadn't heard of gluten ataxia either until about a year after I was diagnosed and had realized that my balance issues were resolving slowly. I also had reflexes again, something I had not had in my legs since childhood. I make it a practice to get copies of all my tests and have squirreled away my MRI films. In doing research on the neurological effects...
  10. ravenwoodglass
    I am so sorry this happened to you. I hate to sound like a jerk but you really should report that pharmacist to the state, if he/she has been lax with you she for sure has with others also. If it had been me that she did that to I would be in the ER hemmoraging so it is not just a minor point. I realize pharms are in a hard position because we have no...
  11. ravenwoodglass
    It can take up to a week for the D to stop gluten-free. This would not be unusual. If you are feeling better I would stay with what you are doing for a month and then you would add in suspect items one at a time. Add them in in pure form, for example when you add back in wheat add it back in as cream of wheat or triscuits. Eat the suspect food for at...
  12. ravenwoodglass
    Are you eating mostly unprocessed naturally gluten free food or are you eating mainstream foods that appear gluten-free by the label? Are you checking every product that has natural flavors? Do you drink alcohol? Many with gluten intolerance can tolerate distilled grains in alcohol and vinegar but many do not. Have you checked all meds, even OTC ones...
  13. ravenwoodglass
    Joss I think of lot of us have families like yours. Mine was very skeptical at first. I ignored them because I had no choice. What made a believer out of them, in particular my DH was when I no longer needed to see a doctor at least 2 times a months, they no longer had to help me get to hospitals for testing half a state away, and our copays went from...
  14. ravenwoodglass
    Extreme moodiness. I was irritable and weepy. I even broke down in tears in the grocery store the first week. After about 2 to 3 weeks I experienced a lifting in mood and a disappearence of my depression issues that had been a problem since I was a child. They never come back now unless glutened.
  15. ravenwoodglass
    First just because you had negative results a while ago does not mean it could not have flared up since, or and this IMHO is more likely, you may be someone who does not show up positive on tests. That was me. The pain I endured for years with the nightly 2 to 3 hour violent, make you sweat and feel faint D every single night no matter what med I was on...
  16. ravenwoodglass
    You can also have negative bloodwork and biopsy and still have a problem with gluten. As mentioned you will want to stay on gluten until all your testing is done if you choose to do biopsy and have your blood tested. After all testing is done that you want to have done regardless of the results I would suggest trying the diet strictly for a couple of months...
  17. ravenwoodglass
    I am the only one in my family to have the gene test. I am not a DQ8 but am a double DQ9. In my case that double dose did seem to lead to more sensitivity than most. I would imagine a double of any gene would cause an increased sensitivity to what ever that gene predisposes us to.
  18. ravenwoodglass
    I use Tom's of Maine. I love this company they list the source of all the ingredients and what they do. No weird chemical names or additives and also soy and dairy free. I use the cinnamint with Myrrh, tastes great and seems to help with my nightly plaque formation from dry mouth and sleeping with my mouth open.
  19. ravenwoodglass
    One additional note to add to the great posts you have already gotten. If you do decide to do the gene tests and it shows that you are 'just' gluten intolerant you will still need to avoid gluten just as diligently as someone who has the 'celiac' gene. The damage that is done to the body with gluten intolerance can be just as serious as 'true' celiac....
  20. ravenwoodglass
    I hope you have the same effect I did. My celiac was finally found because my GI surgeon wanted me in better condition before he did surgery. He sent me to a PT and she nagged me to see an allegist who could guide an elimination diet. I never had to go back to the surgeon and was able to keep the section of my intestines that he was going to remove. I...
  21. ravenwoodglass
    I used to get this effect also and it would also involve my lower legs, but it was secondary to the 'about to pass out effect' that I would get from a hot bath.
  22. ravenwoodglass
    When doing a search of Threelac on line I found this in their ingredients, since the powers that be say that oats are okay for us (and many of us know otherwise) they can say it is gluten free. But it does contain oat fiber, something not all of us may tolerate. A perfect blend of: Organic Flaxseed Organic (gluten-free) Oat fiber Organic Acacia...
  23. ravenwoodglass
    In my case yes. But my brain and joints were already severely effected before the gut stuff became much more than an annoyance. Some will say the difference is that those with celiac will form autoimmune disorders but gluten intoleranct folks don't. In my case that was clearly not true. I had multiple autoimmune problems including arthritis and fibro...
  24. ravenwoodglass
    That is my problem with labeling as it stands now. A lot of people do not realize how little of the food we eat is manufactured in totallity here. Most major companies import the components of their products from various overseas countries. Unless those countries test their components it may be next to impossible for some of them to tell us, unless they...
  25. ravenwoodglass
    How long it takes to feel better depends on the person and the amount of damage they have and how many body systems have been effected. You may get a lot of relief very quickly but most of us have ups and downs for a while. It is easiest to be gluten free and you will heal quickest by eating as little processed food as possible. Eat meat and fruits, veggies...
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