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ravenwoodglass

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Latest Celiac Disease News & Research:

Everything posted by ravenwoodglass

  1. ravenwoodglass
    In addition to asking for the copies of the test results also go ahead and get started on the diet since you have had the blood work and endo. Your body will give you the answer and you may be feeling much better by the time you get to see the doctor.
  2. ravenwoodglass
    Migraines and constant D were the first things to go away for me. Both were gone within a couple weeks. I still had issues with occasional D until I discovered that soy was my enemy also. The next to go away was my periodic episodes of depression. I know only get hit with that when glutened and it lifts after one day. My neuro issues took much longer to...
  3. ravenwoodglass
    Don't have much time so this will be brief. You have nothing to lose by giving the diet a good strict try for a couple of months once all celiac testing is over. You may have more than one thing going on but the diet may give you some relief. Going gluten free won't effect testing for other problems.
  4. ravenwoodglass
    Not all folks with DH have GI symptoms so that may be why some say that you can have DH with gluten intolerance. Your regular doctor should be able to run tests for nutritional defciencies. That may account for the easy bruising and hair loss. IMHO you are wise not to go back on gluten if it makes you severely ill. That is also indicative that what you are...
  5. ravenwoodglass
    Glad you now know what the rash is. Do be aware that a diagnosis of DH is a diagnosis of celiac no matter what the results of other tests that may be done. If you are going to have more celiac related testing do stay on gluten until that is done. After testing is finished you can start the diet. You don't need to wait for the results.
  6. ravenwoodglass
    Since the doctor has already confirmed that you likely have had celiac for years you might want to call and have a nurse ask him, or get a call back from him yourself, getting permission to go ahead and start the diet. As far as this supplement is concerned IMHO it is too expensive for the vitamin levels it provides. We often need more than they contain...
  7. ravenwoodglass
    The low vitamin D is no surprise if she is celiac or gluten intolerant.
  8. ravenwoodglass
    People have welll addressed the ground beef and as stated it should be safe unless cross contaminated. The tuna you mentioned is indeed gluten free as the company says. You may have an issue with soy which is in the veg broth in many tunas. I buy the one that is just water and I think there is also a brand that packages in olive oil. Read the whole label...
  9. ravenwoodglass
    Be sure to let your doctor know your reaction to the challenge if your reaction is severe. Some wise doctors will diagnose based on positive bloods and a severe reaction to adding gluten back in. There are some of us who will have a really bad reaction even if we have only been gluten-free for a short time. Not saying that will happen to you but if it does...
  10. ravenwoodglass
    What would get to me the most is her wanting your child to suffer for another 2 months before she will do an endo. You and your little one have been suffering for so long now. I hope you can get answer's soon and that the testing for celiac takes place soon. Then you can give her a trial on the diet and see if that gives her some relief.
  11. ravenwoodglass
    Welcome to the board. That you feel much better after being on the diet a week is a good sign that you are someone who needs to be gluten free. Now on to the bad news.... If you are going to have any more testing done for celiac you need to get back on gluten. Otherwise you risk a false negative. Too bad your GI didn't do an endo at the same time he did the...
  12. ravenwoodglass
    It would be a good idea to advise your Mom to get tested for celiac. Celiac can cause damage to the brain and nervous system. In some cases they will resolve, at least partially after someone has been on the diet for a while. If she is seeing a neuro and has had a brain MRI celiacs with brain impact will show something called UBO's or Unidentified Bright...
  13. ravenwoodglass
    Welcome. You should go gluten free as soon as you have had the blood drawn. You have a great doctor and although it likely doesn't feel like you are lucky you now have the answer for your problems. Do get your son checked and encourage all first degree relatives to be screened. Your ped can order the blood work for your son but do be aware that there can...
  14. ravenwoodglass
    Did you have positive blood work? If you did you have the option of just saying no to the endo as there is the possibility of a false negative with them anyway. If your blood tests were positive you need the diet no matter what the endo results. If you do go for the endo keep in mind you don't need to wait for the results before you go gluten free. You should...
  15. ravenwoodglass
    There is no way I would touch this product. I also always have to wonder about people that have only posted one time and revived a thread that is years old to tell us that yes this product is gluten free despite the fact that it contains items that could be dangerous for us to consume.
  16. ravenwoodglass
    The one thing that does jump out at me from her food intake is that is is quite gluten heavy. I hope they figure it out soon but if they don't it sure won't hurt to have her on the gluten-free diet for a couple months. The only thing that will impact is testing for celiac which at her age has a high chance of a false negative anyway. But I am sure you know...
  17. ravenwoodglass
    I have had DH since childhood and although it was a long road was finally firmly diagnosed celiac about 10 years ago. I don't have either of the two most commonly associated 'celiac' genes either. Gene testing is IMHO interesting and can be helpful but is not the be all and end all of celiac diagnosis. Whether you are labeled celiac or gluten intolerant the...
  18. ravenwoodglass
    Welcome to the board. It isn't uncommon for folks to suffer hairloss after an illness or bad stressor. It will usually start to grow back after about 3 months or so. It is also normal to be very hungrey for a while after we are first gluten free. Your body was deprived of nutrients and now that you have been gluten free it is trying to pack them in. At least...
  19. ravenwoodglass
    "I have done some research and I have found that celiac disease can cause white matter lesions and spinal lesions, and all or most of these symptoms. I have not been able to find if celiac disease will cause a positive result for oligoclonal bands or antibodies in the CSF." If she doesn't have a positive result with the spinal tap for the bands then...
  20. ravenwoodglass
    With the reactions this little guy has it is inconcievable to me that a doctor would want to do this to him. Can you find another doctor with some common sense who might give you an 'official' diagnosis based on his symptoms and the resolution of them on the diet? There is no way I would do this to my child but ultimately the choice is yours alone to make...
  21. ravenwoodglass
    That is a lot of weight to lose for a little one in so short a time. Can you call the gastro and see if she can be seen sooner? Maybe your ped could pull some strings?
  22. ravenwoodglass
    A colonoscopy is not the test for celiac. You need an endoscopy for that. If they are doing the colonoscopy you could ask them to do the endo at the same time to see how much you have healed. If you have been gluten free, even with a few accidents, that would be the reason your tests are going down. The fact that those numbers are going down is a good thing...
  23. ravenwoodglass
    Do cut out dairy for a bit, all dairy not just lactose but also casien. What are you typically eating? It is best to go with whole foods while healing. If you haven't already make sure you have all your own condiments, nut butters, jellies etc. We do tend to become more sensitive to CC after we have gone gluten free and even small amounts from stuff like...
  24. ravenwoodglass
    Glad to hear that. Just be sure to stress to him that even if the tests come back negative it doesn't mean it isn't gluten ataxia. Encourage him to try the diet after all celiac related testing is done no matter what the results if tests for other stuff comes back negative. Also since the lesions of celiac ataxia resemble the lesions of MS make sure if they...
  25. ravenwoodglass
    Sorry to hear your brother is having such severe issues. There can be many causes of ataxia that are easily treated so try not to worry too much about this. It might be a good idea for your brother to also see an ear, nose and throat specialist considering how quickly this came on and the severity of it's presentation. While it could be gluten ataxia I don...
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