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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Some of us will never show up in blood tests. I don't know why but the NIH estimates that 20% of us have false negative results. Being one of those who don't show in blood tests came very close to costing me my life. When all your testing is done get on the diet for at least 3 months or so. Your body may give you the answer testing cannot. I did finally get...
  2. ravenwoodglass
    I should have mentioned that prediagnosis I had this form of hives along with DH. I don't know which drove me nuts more. Both have gone away gluten free. So although they are different they could be coming from the same root cause.
  3. ravenwoodglass
    I am glad you know for sure. I do so wish my son had been diagnosed while still as young as yours. It will be hard at first but you have found a great place to learn and get support throughout the process. You may want to encourage him to join also and check out the teen section. It might help him feel he has more control in the process and it will let him...
  4. ravenwoodglass
    Possibly but many times especially in the earlier stages damage can be patchy and get missed with biopsies. Since you are done with testing go ahead and get on the diet. With positive blood tests you really should go gluten free no matter what the biopsy results. I hope your feeling better really soon.
  5. ravenwoodglass
    It is not at all uncommon for us to have elevated liver panel results. They usually go back to normal after a while on the diet. I am glad you are seeing the GI soon. Do try the diet after all testing is done though because as you are aware the rate of false negatives in children is kind of high.
  6. ravenwoodglass
    Your test results were postive. If your not having a scope go ahead and give the diet a good strict trial.
  7. ravenwoodglass
    The first part of your test, the IGA, is saying that you are reacting to gluten. The negative Ttg is good news as it says that means your not yet having autoimmune impact. Do keep eating your full gluten diet until you see the GI if you are planning on having a scope done. After your testing is done do go gluten free, you don't have to wait on the results...
  8. ravenwoodglass
    The good news is now you know what the problem is and it is something that can be dealt with without nasty drugs. As far as testing the other children yes do. All your other first degree relatives should also be checked, Mom and Dad, sisters and brothers etc. Celiac is something that can be triggered at any time so even if the siblings are negative now they...
  9. ravenwoodglass
    I am glad your doctor has already run stool testing and that came back okay. She does sound a lot like she may be celiac. Hopefully the GI doctor will see her soon. I know the ped wants to spare her a 'stick' but it might be helpful to have the lab results from the test when you see the GI. Your ped may be unsure what tests to order for a full panel. That...
  10. ravenwoodglass
    I'm not so sure it's normal.I would call the company that made it and see if they can tell you what happened. I do know I wouldn't use it. Perhaps your local high school science teacher or someone at the Health Dept might have some idea. There is pink salt but it is pink when you buy it.
  11. ravenwoodglass
    Call your pharmacist and have them check for you. They will likely need to call you back. Doctors really don't know whether a med is gluten free or not but the pharm should. I do often call the maker if I can to double check but making sure a med is safe for you is part of a pharmacists job.
  12. ravenwoodglass
    I hope all goes smoothly. Now that is done you can give the diet a good strict try and see how it goes. Hopefully he will be feeling better soon.
  13. ravenwoodglass
    Wegmans has a pretty good selection but some stores have more stuff than others. I also vote for the Pamela's mix. It is great for muffins and pancakes and such. Give the Grainless Baker a try, they will be in the frozen section. Their hamburger buns and really good and as soon as I run out of my Kinnickinnick bread I am going to try their bread. I personally...
  14. ravenwoodglass
    This sounds like pressure urticaria or hives caused by pressure. Many who have this will also show signs of dermatographia, where if you lightly run a fingernail across your skin it will leave a red mark for quite a while. You might want to consult an allergist. Some will advise an antihistimine. Tell your doctor and ask them about it next time you see them...
  15. ravenwoodglass
    Personally I would not risk this product. For one thing there are many of us who do react to oats and I would think the chance of CC is high. While oats are safe for some of us the processing of them makes most of them unsafe.
  16. ravenwoodglass
    Thanks for giving us the link to that article. It will be helpful for many.
  17. ravenwoodglass
    I was overjoyed to find their Clam Chowder in my Wegmans freezer section. I haven't tried the chicken noodle yet but did like the Chowder.
  18. ravenwoodglass
    Do have a knowledgeable derm biopsy. It is very important that they know how to biopsy for DH. He needs an active lesions, and it sounds like he has plenty BUT they don't biopsy the lesion the biopsy the area next to the lesion to look for the antibodies. If they biopsy the lesion itself the result will be a false negative. Here is a article from the NIH...
  19. ravenwoodglass
    Yes it could have been a false negative. If going gluten free solves your issues then you may have had a false negative. How many biopsies did the doctor take? Do you have the actual report results that you could post? There are changes that take place before the villi are totally gone and not all doctors recognize them. Most importantly IMHO is how your...
  20. ravenwoodglass
    Welcome to the board. It is overwhelming at first but you have found a good place to get information and support. Read as much as you can and ask any questions you need to. Start out by going with as many whole unprocessed foods as you can. You need to avoid wheat, rye barley and oats. Many companies clearly label gluten ingredients, Kraft is one and Unilever...
  21. ravenwoodglass
    You could also ask your doctor for a referral to a physical therapist. They can evaluate you and design an excercise program to get you started.
  22. ravenwoodglass
    You can recover from neurological problems associated with gluten. Is the process quick? No. Do you have to be very strict? Yes. I had severe neuro issues from gluten and I did recover but it took about 6 months before I noticed a significant improvement although I did get good relief from migraines fairly quickly. Everyone is different but for me being...
  23. ravenwoodglass
    Just a thought. I see the picture of you on that beautiful horse and with the timing of when you started feeling ill I am wondering if you have been winter riding in an indoor ring. With the grain diet most horses have and all the dust from hay and such perhaps that is giving you enough CC to get you reacting again.
  24. ravenwoodglass
    I had chronic bronchitis from childhood and developed asthma a few years before diagnosis. Both are gone now. What you describe sounds like a 'hot flash' which I get when glutened and had what seemed like 20 times a day prediagnosis. If your female and have other odd 'female issues' going on you may want to mention it to your OB/GYN. Celiac can sometimes...
  25. ravenwoodglass
    Those are pretty hign numbers. I would accept the celiac diagnosis and look for where you have gluten sneaking in.
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