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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    AT1001 is not in the market yet so I don't think that is what she is taking unless she is part of the study. There is a pill available in some health food stores that is supposed to help with gluten digestion. HOWEVER it says right on the bottle that it is not intended for use by people with celiac disease. It is early and I can't think of the name of it...
  2. ravenwoodglass
    Glad to hear your doing so well. Slip ups are common at first so don't beat yourself up over them, it happens to us all. Knowing your feeling better is all the thanks 'we' need and glad we were able to help.
  3. ravenwoodglass
    It is common. You are going through withdrawl and that is normal for many of us. For me it lasted about 2 weeks some have it go on a bit longer. Do make sure you are strict with the diet as slip ups can prolong the withdrawl. To help with it perhaps treat yourself a bit whether it is a bit of your favorite gluten-free treat or a relaxing bubble bath or a...
  4. ravenwoodglass
    Glad it worked well for you but the diet will clear up the other issues and negate the need for the med. Do delete iodine at first also as it will keep the skin antibodies active.
  5. ravenwoodglass
    Since there are high rates of false negatives on both blood and biopsy the fact that you had positive blood tests make it pretty certain you need to go gluten free. Any procedure has risks and if you don't want to have the biopsy you don't have to have it to go gluten free. If you are still having issues after being gluten free for a few months then perhaps...
  6. ravenwoodglass
    It is not uncommon for folks to gain a few pounds as they age. Your weight gain is not excessive but I am petite myself so I know that the little bit of a gain can result in a size change. Have you tried excercising to improve your muscle tone the gut area? Are you feeling bloated and uncomfortable? You could try deleting dairy if you are having gut symptoms...
  7. ravenwoodglass
    There is a fairly high rate of false negatives in all the celiac testing. It sounds like the Dapsone worked for you but it is a very toxic med. If you have had all the celiac testing you are choosing to do it would be a good idea to give the diet a good strict try for a couple of months and see if it helps with both the skin and GI issues you have.
  8. ravenwoodglass
    I am not likely to be a lot of help but I eat about the same way you do. I eat one meal a day in late afternoon and usually have a snack before bed. I also don't feel hungry and eat to live not live to eat. I have spoken with both doctors and nutritionists and they have said that what I am doing is okay as long as I am getting the calories and nutrients I...
  9. ravenwoodglass
    I find Cream of Buckwheat to be very soothing. Go with bland food like baked potatoes and broiled chicken, cooked fruits like applesauce and well cooked veggies.
  10. ravenwoodglass
    Different people have different tolerance levels. Being 'below the legal limit' doesn't mean it is safe for all. We have to keep in mind that the legal limit can change, it used to be 200ppm now it is 20ppm and for some of us that is still too high. Also in some countries what is in these products differ. In the US for example wine coolers are malt based...
  11. ravenwoodglass
    For some of us the best proof is in our relief from symptoms on the diet. I am a blood test negative celiac and that delayed my diagnosis to the point where I was almost dead by diagnosis and it cost me and my children a lot of years. I do hope your husband will agree to a trial on the diet. Also make him aware that in addition to false negatives on testing...
  12. ravenwoodglass
    These are all links to articles on the NIH site PubMed. There is quite a bit of research out there. Once your doctors access these abstracts they will find links to other peer reviewed studies. Psychiatric symptoms and coeliac disease Open Original Shared Link Affective and psychiatric disorders in celiac disease Open Original Shared Link Celiac...
  13. ravenwoodglass
    I have had 3 and during the second one I had the same experience. My bowel wasn't twisted with the first and that was an easy experience. The second one was after the horrible reaction to the second gluten challenge and I had the same experience you did. That doctor, the same who ordered the second challenge, said they would do it again but with a general...
  14. ravenwoodglass
    Yea that's what they usually do. Tell you yea your celiac and walk away. I have never heard of one who wanted to do scopes to look for cancer after we go gluten free as your chances of having cancer, related to celiac, after you have gone gluten free are really not that high. There are many here who went undiagnosed for a very long time and never developed...
  15. ravenwoodglass
    Congrats on having a good doctor. Gluten ataxia is progressive. What you are reading about are people like myself who have had it progress to the point where you can't walk unaided. Even then once someone is gluten free it can resolve. I was first effected by ataxia in childhood and even lost reflexes in my legs but the doctors would just shrug and didn't...
  16. ravenwoodglass
    This is just my own opinion but I would go with Enterolab stool testing for antibodies. Do know that you need to be eating gluten for any of the testing to be positive as antibodies are what they are looking for. You seem to already have the answer for yourself, gluten makes you ill if you eat it. Enterolab can also do gene testing. Enterolab does not diagnose...
  17. ravenwoodglass
    Celiac or gluten intolerance can definately effect our reproductive systems. It is know that women can have a hard time concieving and we are more prone to miscarriage and can go through an early menapause. I used to have a great deal of breast tenderness but since celiac threw me into an early menapause I don't know if that was related. My gyno did tell...
  18. ravenwoodglass
    Well it could be the 'nontoxic' adhesive. I also react very badly to paper bandages and latex bandages. I use fabric ones with no problems. I use a pretty generic brand called Top Care (at least I think that's the name. I never let them put a bandaid on after a blood draw. I simply ask them to let me hold the pad on it until the bleeding stops.
  19. ravenwoodglass
    Women often see symptoms get worse after having a baby. I got worse with each pregnancy although oddly my symptoms were very mild during each pregancy. I felt better preggers than at any other time although with my second I did have morning sickness for the first couple of months. Since your having the endo Monday you can start a trial of the diet as soon...
  20. ravenwoodglass
    Thanks for letting me know about that. Actually I think I will pass on these personally. I know they say that the gluten is gone by the time all the processing is done but they say the same about distilled gluten grains and I definately react to those. May not effect all of us but for me they are out.
  21. ravenwoodglass
  22. ravenwoodglass
    I hope your husband will at least agree to a trial of the diet with him. Perhaps you could go at it in the same way you did with the youngest, do a trial for a few months and then a challenge. Since his allergist also feels he needs to be gluten free if Dad wasn't at those appointments perhaps either he could go with you to one or the allergist could write...
  23. ravenwoodglass
    Yes you can improve that quickly. I have literally never had another migraine since the day I went gluten free, except a couple times early on when I got glutened. My tummy issues also stopped really fast and after having D day and night for 15 years that was a real pleasent change. I hope you continue to improve. After you have been feeling better for...
  24. ravenwoodglass
    While as you said it is your issue do be aware that at any time it could become their issue as well because celiac is very strongly genetic. Do explain it to them in simple terms and they are old enough to grasp that gluten foods make Mommy very sick. Some mixed households will have the children eat gluten foods in only one place, like at a table for example...
  25. ravenwoodglass
    Before I was diagnosed with celiac I was allergy tested by the skin prick testing. I was reactive to 98 of 99 things they tested me for. My allergist later said that was a big indicator to him that I was celiac and he put me on a strict elimination diet. When I reacted severely to adding gluten back in he referred me to a GI who confirmed that I had celiac...
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