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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
    Now that I may have figured out, with much assistance (Thanks y'all), what I am, I am wondering how many others are also DQ 9. Mainly I am wondering if others with the same gene are prone to the same amount of early neuro damage and if they have the same extreme reactions from alcohols and vinagers. I know one of my children reacts as violently as I do...
  2. ravenwoodglass
    You don't know how much I wish you were right on this. Unfortunately Barley and Rye are not included. For one thing they are addressing true allergins which gluten is not, it is considered an intolerance which is a whole different reaction. With an allergin you can drop dead at a restaurant, with an intolerance you'll die at home a few days later, or just...
  3. ravenwoodglass
    You have got a very good doctor there and I sure do hope you listen to him. Your doctor, in your circumstances, is very justified in saying he thinks you should go gluten free regardless of the outcome of the biopsy. I am surprised to hear he recognizes that celiac can be the problem despite a miss on the biopsy. Damage can be spotty and with 22 ft of...
  4. ravenwoodglass
    Thanks for the attempt to clarify. So I am a double DQ3, I take it this means both my parents contributed one DQ3 gene, am I right on that?
  5. ravenwoodglass
    In short for most of us this does goes away, gluten is a very powerful neurotoxin and unfortunately the way it effects the brain can make it difficult to medicate. But once the body has cleared the gluten and started to absorb some nutrients the depression and anxiety should ease. Some, like my family have found this symptom very usefull for telling whether...
  6. ravenwoodglass
    I think it is the subtype that is 9,9 at the very end, is that what you refer to? I don't understand what exactly subtype means unless it is a further narrowing in the genetic pool. Hopefully someone will post with more insight.
  7. ravenwoodglass
    Perhaps you could supply us with a link, that must be very new revision. This post that I have linked to addresses that law and that issue. It also has a link for a way to make your voice heard so that barley and rye are also included. As of now they are not. Open Original Shared Link
  8. ravenwoodglass
    I have wondered for awhile what my genes were, I told DH that from what I have seen of others here that I thought I was DQ1, I was right, twice. He was sure I would have a 'celiac' gene because I was so extremely sick at diagnosis. I thought since my neuro symptoms were present since childhood but GI only became a problem after kids were born that I was...
  9. ravenwoodglass
    You get this because for many of us gluten is a neurotoxin.
  10. ravenwoodglass
    Hi David, Thanks for the links. It is very hard for folks not to be skeptical about the impact of gluten if not eaten. After all in many countries doctors are clueless themselves. Few of them take the time to research throughly a disease considered to be so rare. And so many of them just don't listen to what their patients say or they give it little...
  11. ravenwoodglass
    Your not nuts. If your inhaling the dust it is not only contacting your mucous membranes it is also dripping in your mucous down your throat. Think of how many times in just a few minutes you swallow your own spit even. If you ever have to do this again at least wear a mask.
  12. ravenwoodglass
    And some of us get real uncomfortable blisters. Thanks Jestar for posting the list.
  13. ravenwoodglass
    If believing valid multiple research findings makes me paranoid so be it. Multiple articles are to be found on Lancet, PubMed and other reliable medically orientled web sites. The autoimmune reaction is not just a gut one it is systemic. You may choose to believe whatever you choose.
  14. ravenwoodglass
    Your doc, well he's not the greatest. With positive blod, positive dietary response and villi blunting there really is no doubt. Do not let him talk you into poisoning yourself for a couple months just so he can say 'Yup now the villi are totally destroyed it's definately celiac.' And get the money for a repeat endo.
  15. ravenwoodglass
    I second Doll on this. Use caution trying these if you are new to gluten free.
  16. ravenwoodglass
    Isn't it nice to eat something that tastes good. This is one of my favorite companies you have to try the French Bread Mix to make pizza dough. It makes a deep dish crust to die for, even gluten eaters seem to like it. It is a little sticky to spread but well worth the trouble. I am glad you had good luck with the muffins. I also like Pamela's gluten...
  17. ravenwoodglass
    No offense taken, your absolutely correct, I do know we can not trust the folks that make these things. I did have a link to a list of 599 of the additives in ABC order. Wheat and wheat flour are at the end of the list. hopefully the link will work. There is talk about the FDA starting to regulate what goes in cigs, a step in the right direction in my...
  18. ravenwoodglass
    Hi Steve, Do you have any other symptoms, even stuff that is seemingly unrelated? I do know that there are some that have had this, I am one of them. I also used to get pressure uticaria where for example the waist band of my pants would cause hives. I know it is quite uncomfortable. It is one of those things that I don't have anylonger so in my case...
  19. ravenwoodglass
    Your endo findings were typical for changes related to celiac. Your symptoms also highly suggest it. In addition to going gluten free you need to get a good sublingual, that parts real important, B12 supplement. Do not get one that does not say free of gluten, but most will. Your nervous system is being impacted, that is the reason for the tingly feelings...
  20. ravenwoodglass
    You just did a gluten challenge. The results were positive. It is common for the symptoms to become worse after going gluten free and then getting poisoned. Your body is going to tell you in no uncertain terms that if does not want you eating it again. This is how some of us who are unfortunate and have false negatives on blood work are diagnosed. Unfortunately...
  21. ravenwoodglass
    Steve, you have been missed. I hope things get better for you soon, you have a lot of friends here that respect your voice and miss you dearly. If there is anything we can do just please let us know. Take Care. Krista
  22. ravenwoodglass
    I finally got so frustrated with sores and losing hair that I stopped coloring at all. I still have days when I stand in front of the hair color in the store and look wistfully at all the pretty colors. I tell myself every morning that I like my salt and pepper, that people pay good money for highlights that I have for free, someday I might start to believe...
  23. ravenwoodglass
    Your regular doctor can order the repeat Ttg tests for you, she should also be running a check of your B12, ferritin, iron, and folate at a minimum to check and see if your are absorbing nutrients yet.
  24. ravenwoodglass
    Great idea, I guess the 40+ years it took for them to diagnose me after I was symptomatic fits under the 10 plus bracket. We should all probably print out these polls and bring them to our clueless doctors and send them to our insurance companies and congressmen, it might open some eyes.
  25. ravenwoodglass
    I haven't checked this product but many salsas are okay UNLESS you are one of us who reacts to distilled grain vinagers. It is always best to check to be sure though. They are also really easy to make fresh yourself and keep well in the frig, if it lasts long enough to keep.
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