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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Yea you need to get a hard copy of those tests. Keep in mind that false negatives on both blood and biopsy are not uncommon. If the IGA at 127 was a total IGA then that looks a little low IMHO. If the 127 was for the celiac IGA testing then that looks like a high or positive result. There is IMHO no excuse for the nurse being so rude to you. Do be sure...
  2. ravenwoodglass
    Yes she should keep eating gluten until all her celiac related testing is done. If she is having a biopsy she can start the diet the day the biopsy is done. She doesn't have to wait on the results.
  3. ravenwoodglass
    Since I have pretty significant neuro impact I know pretty quickly. Usually within an hour or so I will feel like I am falling to the right even though I am not and my stomach will start to growl. A severe depression will hit within 24 hours and lift about 24 hours later. Then the real 'fun' starts with the joint and muscle pain, upset stomach etc. In all...
  4. ravenwoodglass
    Please get her back on gluten. She needs to be on a normal gluten diet for testing for the best chance of an accurate result. While you are waiting for the testing spend as much time here as you can reading about all that you need to do to insure that she is completely gluten free. As soon as the tests are done she can give the diet a good strict try. There...
  5. ravenwoodglass
    The fact that it is itchy is significant. It may be DH, or the skin form of celiac. Make sure all your topicals are gluten free, including shampoos etc. Also make sure that all your eating is for sure gluten free, check all meds and supplements and avoid iodine. If the rash consists of large mosquito type bumps then that would be an indication of an allergy...
  6. ravenwoodglass
    I think she is misinformed about the full systemic effect of celiac disease, but she is not alone in that as far as doctors go. Since she is a GI doctor her primary interest is going to be in the GI symptoms. It seems you know more than she does at this point and I do think that giving up dairy may be helpful for you. You know you need to watch out for lipsticks...
  7. ravenwoodglass
    IMHO yes you could be getting CC'd from cleaning up after a gluteny kid. There are some of us who keep a gluten free house for this exact reason. Even if your little one seems fine with gluten do keep an eye on her growth charts, if she starts to fall in percentile that may be an indication that she is not doing well with gluten.
  8. ravenwoodglass
    For me brain fog is when I have trouble thinking. My memory is shot, constantly forgetting things and I have trouble with talking. I know what I want to say but just can't get it out of my mouth. I get very frustrated very easily and also my temper will flare, perhaps not a true part of brain fog but definately an effect I get from gluten. Things that will...
  9. ravenwoodglass
    But it can be derived from wheat germ oil and also soy. I am going to suggest that you stop using the wipes for a month and see if it makes a difference. While gluten cannot pass through intact skin it can be absorbed by mucous membranes. If you were symptom free I would say don't worry about it but since you are still having issues IMHO dropping any...
  10. ravenwoodglass
    I hope he will consent to seeing your doctor. If he will remember that while the doctor can not discuss his medical matters with you, you can discuss your concerns about your husband with her. My going to my ex-husbands routine colonscopy was what got him diagnosed. Since the doctor was doing blood work anyway I suggested strongly that he add the celiac panel...
  11. ravenwoodglass
    It sounds like your doing what you need to do. One thing I didn't mention before was withdrawl. Many of us do go through it. It can make us feel down, irritable and quite out of sorts. You may want to try some sublingual B12 for a bit and see if that helps. Many of us benefit from supplementing with that. There are also a lot of us who deal with ups and downs...
  12. ravenwoodglass
    I agree with Peter completely. One other thing in case the doctor didn't mention it is that everyone in the family should now be screened for celiac, regardless of whether they think they have symptoms or not. Celiac can cause a lot more than just tummy issues so even if folks don't have stomach problems they should still be screened.
  13. ravenwoodglass
    You mention eliminating wheat, you have eliminated barley and rye also correct? What are you typically eating? In the beginning it is best to stick with whole fresh or single ingredient frozen foods. You need a new dedicated gluten-free toaster, to replace scratched cookware and colanders and wooden utensils. With that high of a TTG you are doing the right...
  14. ravenwoodglass
    Did your doctor tell you to avoid iodine in supplements and your salt? If not that could be why your lesions are not resolving. Iodine will keep the antibodies active. Also check all your topical stuff for gluten ingredients. The gluten cannot cross intact skin but it can enter through broken skin and if you use a shampoo, lotion etc you can get CC'd through...
  15. ravenwoodglass
    You have 2 first degree relatives with celiac and you have positive blood work. I would consider myself diagnosed if I were you. You would need to be back on gluten for about 3 months for the best chance at a positive biopsy and even then your results could be a false negative. You may also become even sicker from the challenge than you were before your blood...
  16. ravenwoodglass
    I am so glad you are there for this other little girl. You will surely be a big help for her, she must feel so sad and isolated. Funny the way things work out sometimes.
  17. ravenwoodglass
    I don't really think that company did anything wrong. Some of us are able to handle stuff that is processed in the same facility, I am not one of them. Since it is not required that companies put that on the label I would be grateful for the warning. Is xantham gum made out of a gluten ingredient or is it a CC issue?
  18. ravenwoodglass
    It is great that you are there for your little sister. I know it is difficult for you but the fact that your are taking her needs before your own says a great deal about your character. You are to be commended, give yourself a pat on the back. As to the questions, yea they are likely a bit annoying but if you answer them simply, "I have celiac and can...
  19. ravenwoodglass
    You could try keeping lots of good sweet stuff like fruits and berries handy to handle those cravings instead of grabbing say a candy bar or soda.
  20. ravenwoodglass
    Yea and we also have to keep in mind that once the rules are in place they will likely allow items that test out at less than some defined percentage to carry a gluten free label. I personally would just be happy if they required gluten ingredients in any form or amount to be listed. It is likely, I fear, that items like soy sauce that test out at under that...
  21. ravenwoodglass
    Not psychic just someone who has delayed reactions gut wise myself. It can make it hard to figure out what got us at times. It sounds like you have a definate pattern to your symptoms, I do too but didn't realize it when first diagnosed. I am sorry you had to get so sick but I am happy that you now know and can heal. I hope that you are feeling better soon...
  22. ravenwoodglass
    Oh boy do I know the fear of going in to a doctor and hearing nothing is wrong. I lived it for far too many years. I am a sero-negative celiac. I couldn't tell you how many times I was tested for it but no doctor ever mentioned the high rate of false negatives or told me to try the diet. You do sound like you are in the right place. Don't go gluten free...
  23. ravenwoodglass
    That was a high result on the saliva testing. It is however not testing I know much about but yes I would pursue the celiac issue. I could be wrong but I think the RAST testing is for allergies, if it is you need to be aware that celiac is not an allergy. You can be both allergic to gluten foods and have celiac, which is an autoimmune problem or intolerance...
  24. ravenwoodglass
    That's a really good point.
  25. ravenwoodglass
    I agree with this. Tell him if he wants to eat the gluten free stuff you will need an extra $50-$75 a week added to the grocery budget. The fact that the gluten free diet is not a weight loss diet is another thing to bring up. Take him shopping with you and grab a loaf of regular bread or a box of crackers and compare the cost and calories. If he wanted to...
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