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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    You also need to factor in that for some gluten is a delayed reaction. It may have not been what you were in contact with that night it may have been that you were unknowingly CC'd 3 or 4 days before. Not all of us have immediate reactions for some it takes a bit for the reaction to appear. That can make things even more confusing.
  2. ravenwoodglass
    Hi Malcom, Welcome to the board. Have you had any testing done? If not start eating gluten again immediately and get the celiac panel done. Your doctor can do this for you, it is a blood test. The Gold Standard in the US for diagnosis of celiac is a biopsy of the small intestine in which damage is found. However there are risks for a false negative...
  3. ravenwoodglass
    Me LOL. Boy can I identify with this. I also have ataxia and in addition to having that since childhood I have a condition that causes my joints to dislocate frequently. I have even blown out my meniscus just standing up from a crouch. As with you the ataxia has improved a bit since I went gluten free, I now feel like I am walking on a boat in slightly...
  4. ravenwoodglass
    I would start by cutting out just the gluten and dairy and possibly soy. It does take a while to heal and there is much to learn about nonfood sources of gluten in the begginging. If you are still having severe issues freqently after that a good person to see is an allergist. They can do skin testing for actual allergies and then give you a nutritioanally...
  5. ravenwoodglass
    Yes you likely do have an issue with gluten. It can take up to 7 days for a reaction to occur after you reintroduce it as it can take time for the antibodies to build up. That is the reason an allergist will have you add a food in for a week before deciding that food is safe for you. If you want a diagnosis you need to stay on gluten and then get blood...
  6. ravenwoodglass
    I hope you feel better soon. Taking gluten out of your life means ALL gluten. We generally can't cheat even a little bit.
  7. ravenwoodglass
    Hello and welcome to the board. You do sound like you could be one of us. Do go ahead and get the blood work done for celiac your regular GP or even a clinic can order a celiac panel for you. Do not go gluten free until all your testing is done. It can cause a false negative and there is a risk of a false negative even while eating gluten. Do as mentioned...
  8. ravenwoodglass
    So they can sell more of the products. Thanks for the heads up on this candy.
  9. ravenwoodglass
    Glad to hear they have looked into the lump and that it is not something dire. If the diet is helping you are doing the right thing. Celiac disease can also cause neuro issues with anxiety and depression and this may resolve once you become more profiecient in the diet. For me a severe depressive episode with suicidal ideation and loss of balance are the...
  10. ravenwoodglass
    Did this doctor tell you to go on the diet strictly and then he would rebiopsy or did he tell you to keep eating gluten? Some doctors are very reluctant to diagnose celiac and will tell us to keep on gluten until the villi are totally destroyed. IMHO you should do the former. Go off of gluten strictly and then if symptoms have not resolved start looking...
  11. ravenwoodglass
    I am so glad they got this figured out and that you are improving. Thanks for letting us know.
  12. ravenwoodglass
    The accidental glutening are the cause of the continued elevation in the Ttg. That will go down when the glutening stop. The high folate is is likely a result of your vitamin intake and or eating foods that have been fortified with it. More important is that the high folate can block an accurate reading of the B12 and cause the B12 reading to be higher...
  13. ravenwoodglass
    IMHO it is best to be super strict at first and then slowly add things in that might be risky, like corn chips, processed foods and gluten containing lotions and such. The reason why is because a person with celiac is making antibodies to gluten. Those antibodies can choose to attack any organ in your body including your brain. You want to stop that antibody...
  14. ravenwoodglass
    I think the key may be in the sentence I bolded. Gluten is sneaky and it is hard to ferret out hidden gluten at first. Your body will try to protect you once you have gone gluten free and will tell you by an increase in symptoms that it really doesn't like it when you accidently get a bit of gluten. The best way to go gluten free in the beginning is to...
  15. ravenwoodglass
    Have you eliminated gluten from nonfood sources? Lotions, makeup, and such can be a source of CC. Do you have a significant other that eats or drinks gluten? If you do their stuff like lipsticks need to be gluten free and if they have eaten gluten and not brushed their teeth you can be glutened by a kiss. Do you have pets and if you do are they eating...
  16. ravenwoodglass
    Your first step should be getting tested, do keep eating gluten until the tests are complete. Ask your doctor for a complete celiac panel. Lumps should not be ignored and should be evaluated by your doctor.
  17. ravenwoodglass
    Peter is right about the risks to vision. One of the most serious is diabetic retinopathy which is permanent and progressive. Here is a link to info on it from the NIH Open Original Shared Link
  18. ravenwoodglass
    Do they do mucosal challenges in NZ? Those are a test where they use either a rectal suppository or apply gluten to the mucous membranes in the mouth. Then they wait a couple of hours and biopsy the mucosal tissue and look for a reaction. This is not a test that is done in the US and I don't know what countries use this test. Your only other option is...
  19. ravenwoodglass
    That sounds so good and so easy, thank you!!!! My Mom used to make frosting with just powdered sugar milk and vanilla but I can never get it to come out as good as hers did.
  20. ravenwoodglass
    Welcom to the board, read as much here as you can as there is alot of info to be found. Yes you do need to keep eating gluten until all testing is done. What you experienced does sound like it could have been a gluten reaction. If it happens again when you add gluten back in again so you can be tested that is also an indication that you shouldn't be eating...
  21. ravenwoodglass
    Unfortunately there are far to many of us out there that are or were in the same boat. I was blood tested repeatedly and I am in the 30% group that don't show up on blood tests so doctors took that as gospel and didn't even tell me what 'sprue' was other than to say to be glad I didn't have it as I 'Wouldn't be able to eat anything'. I was very seriously...
  22. ravenwoodglass
    You might want to see if you can find a clinic in your area. If you call your local Health Dept they can tell you where one is located. Many will charge on a sliding fee scale.
  23. ravenwoodglass
    It is hard to get around the expense and looking at a 9 buck pack of pizza shells or a $6 box of cookies with 12 cookies the size of a half dollar makes you almost want to cry. I will admit that when I was first diagnosed I did melt down a couple of times in the grocery store. Of course making my then teenage daughter refuse to shop with me for a bit. ...
  24. ravenwoodglass
    I think it is actually reversed. The mini's are the ones I remember that people spoke of having an issue with. Very very rarely I will get the full size cups and haven't had an issue but it has been a long time since I had one so don't take that as a certainty that they are gluten free now. You might want to do a board search or post the questions in the...
  25. ravenwoodglass
    Celiac is covered under the ADA but that does not mean that it qualifies for disability. Strict adherance to the diet will usually resolve most issues. However there are at times other effects that are related to celiac that if present may qualify someone. This is the case when people have developed neuro issues or autoimmune diseases due to the long length...
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