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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    How long ago were you diagnosed? Were you just diagnosed in June when you joined the board? If so please be aware that it can take time for the antibodies to go down. Most doctors will want to wait 6 months or so before they recheck. If in addition to the vitamin levels you mentioned if they can also check your B vitamin levels that might be a good thing...
  2. ravenwoodglass
    It can take some time for a reaction to happen. When I did my challenge I was fine for a couple days and then on day 3 it hit, hard. I hope you don't react too strongly and that you can get a definate answer from testing when the challenge is over.
  3. ravenwoodglass
    Has your doctor suggested physical therapy? You may want to check into that before agreeing to surgery or botox. There are PTs who specialize in incontinance issues and they can be quite helpful.
  4. ravenwoodglass
    And some of us lucky folks get all three forms. So you itch madly and fall into walls as you are racing to the bathroom. Take my word for it not fun and so glad those days are over!
  5. ravenwoodglass
    Welcome to the board. Are you following all the stuff we have to do to avoid cross contamination? He needs his own toaster, condiments, you can't use stuff like a colander that is used to drain wheat pasta for his gluten-free pasta, supplements and script meds need to be checked to be sure they are gluten free etc. It isn't just that food must be gluten free...
  6. ravenwoodglass
    When my doctor put me on a strict elimination diet he had me add back a food, in as 'pure' of a form as possible, three times a day for a week before I could consider it a safe food. If I had a reaction I wasn't allowed to add anything else new in until the reaction was over. I have a symptom 'cascade' with gluten that starts within a day and D hits on...
  7. ravenwoodglass
    Even if you are negative that doesn't mean that you children will never get celiac. You haven't got your genes test back yet. If their father hasn't had his genes tested then you don't know whether he carrys the gene either. People only need one celiac associated gene to get celiac and it can come from either parent. With Marsh 1 you could still be celiac...
  8. ravenwoodglass
    He sounds wonderful. I thought the right one would come along when the time was right. I have a big black long haired kitty too. He has white feet and a white blaze and is also one of the sweetest kitties I have ever had. People that don't like black kitties don't know what they are missing.
  9. ravenwoodglass
    Can you get a second opinion from another doctor? In the US it isn't unusual to request a second opinion when the first doctor can't figure out what is wrong. I agree with Karen that you may also have something else going on that is being missed.
  10. ravenwoodglass
    Try not to worry too much. If the liver issues are gluten related then the issues may well resolve gluten free. It could take a bit of time though. Please be sure not to drink any alcohol whatsoever if you do drink.
  11. ravenwoodglass
    Yes celiac can impact the liver. Did your doctor do any celiac testing before telling you to try the gluten free diet? If not it was pretty irresponsible of her to tell you to go gluten free as you will now have to do a challenge before you can be tested.
  12. ravenwoodglass
    Yes.
  13. ravenwoodglass
    Are you sure nothing in your surgery was messed up? Keeping up the search for a surgeon that may help you may be your only option. I wish we could be more helpful for you.
  14. ravenwoodglass
    Is the surgery you had what they in the states call 'plastic surgery'? If that is the case there are some doctors who have a TV program here called 'Botched'. You could look them up on line and see if they have any advice or can help you. Other than that I have no ideas but someone else here may. Good luck and I hope you are feeling better soon. Try to hang...
  15. ravenwoodglass
    If she has been diagnosed with 'gluten intolerance' and has both the most commonly associated celiac genes she likely has celiac,IMHO. Testing on little ones is not very reliable, from what I understand, and she may have had a false negative. What celiac testing did she have and what were those results?
  16. ravenwoodglass
    You could try dropping both those items and see if your symptoms resolve. You could always challenge them again when you are feeling well to see if the same thing happens.
  17. ravenwoodglass
    I live in NY and that is what I saw also. Looks like the statements differ by state.
  18. ravenwoodglass
    It looks like most of the positives were from supplements. Of course you have dropped those but if you are looking for safe ones do you live near a Wegmans? I take Wegmans supplements when I feel I need one. They have celiacs in their family and I have never had an issue with any of their products. That said if you can try and get as many of your nutrients...
  19. ravenwoodglass
    In the FAQ section of their website they do state that their beer is gluten free. They also give great detail about the testing that they go through and the processes that they use for brewing the beer. I like that they do not use sorghum to brew it as to me that has a nasty aftertaste. I have really missed beer and will definately give it a try.
  20. ravenwoodglass
    Have you seen a physical therapist? I found that to be very helpful when my progress seemed to have stalled. If you haven't recently you may want to have your vitamin and mineral levels checked. I find magnesium to be helpful when I am dealing with a lot of cramping and for me supplementing with B12 seems to have helped with some of the nerve issues. In...
  21. ravenwoodglass
    Keven it can take some time to heal. Some of us here lived undiagnosed for decades and the damage was severe but we recovered and so will you. It is hard when you don't have people in your life that have to deal with the same things you are health wise but now you have us. If you have not been eating whole unprocessed foods you need to start now. Many young...
  22. ravenwoodglass
    Celiac and wheat allergy are two different things. It is possible to have both. Not everyone with celiac had D, some have C, and some have no digestive symptoms at all. If you think you may have celiac get tested. Do not stop eating gluten until all celiac testing is finished.
  23. ravenwoodglass
    Yes it is a good idea to get tested. Do not go gluten free until all testing is finished. If one or both of you are celiac please know that the baby needs to be tested as do all your first degree relatives. If baby is negative do retest every couple of years.
  24. ravenwoodglass
    You may want to ask your doctor if she is willing to give you an 'official' diagnosis if your symptoms resolve on the diet. That way if you have to be hospitalized or want to have any children tested down the road it will be easier. Chances are that your symptoms will resolve completely. No one can say for sure. If the vision issue doesn't resolve soon...
  25. ravenwoodglass
    Gluten ataxia is celiac. Have you had an MRI of the brain? With ataxia they will find bright white spots called UBOs or unidentified bright objects. Unfortunately not all neurologists know what they are and since they are similiar in appearence to the lesions seen with MS some doctors will confuse them with those. With your symptoms you should not IMHO...
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