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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
    This post made me kind of sad. I heard the same drama queen, wants to be sick sort of thing from my family and doctors all through my childhood and well into my adult years. I really hope you get her throughly evaluated for celiac and that you also give her a few months on a gluten-free trial. Things may become really bad for her at puberty if you don...
  2. ravenwoodglass
    I did, neck and groin mostly. They were swollen for years and doctors attributed it to my 'picker's acne' their misdiagnosis for my DH.
  3. ravenwoodglass
    It is hard at first but with the aid of all the great folks on this board you will soon get used to it. Something that helps me on the now rare occasions when gluten makes 'the little red feet' start stomping in my brain is the knowledge that it is the gluten and it will pass. Encourage your relatives and freinds to come visit the board and read what many...
  4. ravenwoodglass
    I know I did. I would even have a sweater in summer and lots of blankets on the bed. This did stop after I had been gluten-free a while.
  5. ravenwoodglass
    Celiac disease can cause discoloration because it can effect the formation of the enamel. This generally results in very soft teeth and lots of cavities. Many of us have multiple crowns.
  6. ravenwoodglass
    Are you supplementing with iron and sublingual B12? If not I would start. I wish I could be of more help.
  7. ravenwoodglass
    You are not crazy, and please don't just not eat. There are celiacs whose primary complaint is psychological issues, sometimes only those issues for years. Many also have constipation and some only gas or heartburn. I have been celiac since childhood but other than gas and a very loud tummy my GI symptoms didn't show up till my late 20's. Please use care...
  8. ravenwoodglass
    Hi, They weren't looking for the antigliadan antibodies when they did the taps. They were looking for the markers for MS, which they did not find. Hopefully someone will be able to answer the Purkinje question because I don't know the answer to that. I am actually very fearful of the Zonulin antagonist mainly because it will only act on the gluten that...
  9. ravenwoodglass
    First what form of Immodium do you take? The liquid is not gluten free and I would call and check the gluten status of the other types also to be on the safe side. I continued to use the liquid as a preventative so that I could go to the store, pick kids up from school etc in the 1st year gluten free and thought either the diet wasn't working or that I...
  10. ravenwoodglass
    I haven't had any genetic testing but I have had MRIs and spinal taps because they thought I had MS. They found white matter lesions but my neuro said they were just UBO's and that some folks have them and they mean nothing. I also had electromylograms where they stick needles in your muscles and measure the muscles reaction to electrical stimuli. These...
  11. ravenwoodglass
    Have you eliminated gluten from toiletries, cosmetics, vitamins and checked all your OTC and prescription meds? Not eliminating the gluten from these sources can keep you sick. IMHO you should also find a new doctor.
  12. ravenwoodglass
    I don't know if it would be suitable for you but my DS and I will use Nyquil.
  13. ravenwoodglass
    It is unfortunate that so many doctors and lay people just assume it is a normal part of aging. These are by the way real symptoms that should not be ignored or considered normal. I thought they were normal too until I was 'lucky' and had them resolve with my celiac diagnosis. But then again many think that heartburn and gas are normal also and many attribute...
  14. ravenwoodglass
    You may also not have a form of celiac that impacts you neurologically. That is not the case for myself and my family. If that is the case you are fortunate.
  15. ravenwoodglass
    That one day certainly in this case won't make a difference mainly because, and I hate to break this to you, but a camera up the butt isn't going to find celiac. You would need an endoscopy where they go in from the other end. And if the endo comes out negative go gluten free for a while anyway. Make sure the doctor does a complete celiac panel and that...
  16. ravenwoodglass
    You didn't see some big wig celiac doctor in Boston did you? What you were told sounds just like what my DD was told when she saw the person she saw in Boston. Supposedly this doctor had her original endo report and blood work but told her she didn't have celiac and the first doctor misdiagnosed. I am so angry I could spit about that. She has used...
  17. ravenwoodglass
    I am so glad it is passing and you are feeling better. I hope the day goes well.
  18. ravenwoodglass
    Strong yes for me on this. I also lost a great deal of hair. They also used to test my thyroid frequently sometimes numbers would be a bit off but not out of the normal ranges. I agree these were not thyroid issues, they were gluten issues. Everything you said in your second paragraph could have come directly from what my many doctors said before...
  19. ravenwoodglass
    This is one of the best articles I found when I researching the effects of gluten on the brain. It also details the need for total, absolute exclusion of gluten that is needed for recovery from the neuro complications. Those of us who have the neuro related problems need to be even more certain that we eliminate gluten from everything. They even have an...
  20. ravenwoodglass
    I lived with that sort of thing for 15 years before my diagnosis. I went gluten-free when my allergist did the elimination diet and got the response you did. When we challenged wheat I became very ill again and was referred to a GI. I was so sick from the challenge that he decided to diagnose me without the biopsy, it was just too obvious. My DD had...
  21. ravenwoodglass
    Good catch on that, I missed the week. That is much to short of a time to wean off a drug. I weaned off all meds under a doctors reluctant supervision before I did the elimination diet and we took a full month to do it. Not a pleasant time either, I made bi weekly trips to my acupuncturist which helped with the pain of the celiac and the withdrawl symptoms...
  22. ravenwoodglass
    I use Giovanni shampoos and conditioners, I can get them either at my regular market or at the health food store. I have heard many use Pantene, that's what my DS uses when he is not at my house using my more expensive stuff. There have been some threads on this recently so you may want to do a search.
  23. ravenwoodglass
    This sounds very familiar to me. I was told at one point it was fibro and to learn to live with it. I did get some relief from acupuncture treatments but gluten free the pain is gone. I believe it comes from inflammation in the muscles from the gluten in the bloodstream. I would also suspect your rash is also from gluten as I get pressure urticara and...
  24. ravenwoodglass
    Andrew you might want to consider looking into some of the research that has been done in Europe. You might also want to go into the NIH web site and take a look at some of their more recent findings. They are getting ready to launch a campaign to bring more celiac awareness to the doctors that are here in the US. There is a link to that site in the Publications...
  25. ravenwoodglass
    Lisa I agree you may want to call your doctor. Is there any chance in addition to the drug stoppage that you might have been glutened as well?
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