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GlutenWrangler

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Everything posted by GlutenWrangler

  1. GlutenWrangler
    Hey Jason, I went through the same problem you are having. I am allergic to basically everything, and I no longer eat because of it. I'm on IV Nutrition. But don't panic, I'm sure you won't end up like me. I'm guessing that your food allergies are more of a recent development rather than something you have had since birth. If that's the case, you should...
  2. GlutenWrangler
    Genetic testing does not and cannot rule out Celiac Disease. Celiac Disease isn't exclusive to the DQ2 and DQ8 genes. Two percent of diagnosed Celiacs do not have DQ2 or DQ8. I have DQ1 and DQ3, and I am a diagnosed Celiac. So even if your DNA tests comes out negative for DQ2 or DQ8, you can still have Celiac Disease. Just something to keep in mind, ...
  3. GlutenWrangler
    Tiffy, It's great that you have had such a dramatic improvement on the gluten-free diet. Don't worry about your negative blood tests. That's to be expected. Your symptoms are just like mine were, classic Celiac Disease. You symptoms and your positive dietary response is a sure sign that you are a Celiac/Gluten Intolerant. Personally, I believe that Gluten...
  4. GlutenWrangler
    I consider it to be unethical to ask a diagnosed Celiac to do a gluten challenge. You have been diagnosed by a doctor skilled in autoimmune disorders, end of story. There's nothing left to prove to this GI doctor. If a GI doctor doesn't accept your Celiac diagnosis and work with you to figure out what else could be going on, you should find another one. Every...
  5. GlutenWrangler
    When my illness hit me four years ago, I was sure that it was temporary. I knew in my mind that in time, I would be back to perfect health without any worries. But as time went on, I only saw the opposite happen. And even when I was 100 pounds, I still felt that complete wellness was possible. I always prided myself on my optimism through periods that would...
  6. GlutenWrangler
    I don't eat because I can't eat. I've been on IV nutrition since June 27th. I probably won't be eating any time soon either, since no doctors can figure out how to treat my condition. -Brian
  7. GlutenWrangler
    I go to the supermarket often, at least three times per week. Since I can't eat, I buy a lot of things to drink. Mainly I buy Sprite, Water, Gatorade, and Nantucket Nectar Lemonade. They are the staples of my "diet". But it is definitely strange to be the guy who always goes through the checkout line with a cart loaded with drinks, and no food. A few employees...
  8. GlutenWrangler
    You would have to somehow bring your children to the USA so that they could be evaluated. You could contact Johns Hopkins, explain your situation, and see if they could accommodate your children. You could fly here during the 7 hours when your daughter isn't hooked up to the gastrostomy tube, and then when it's time for her to hook back up, you'll be at Johns...
  9. GlutenWrangler
    Scotty, Thanks for the kind words. For me, posting on this forum is therapeutic. It makes me feel better to help others. Plus, many of the people here are very supportive. It helps to know that others can appreciate how difficult some of our lives are, since we don't always receive that type of consideration out in the world. I would really love to...
  10. GlutenWrangler
    Gracie's Mum, It's true that school will always be there. Health always comes first. I'm pretty sure that a stomach virus triggered my Celiac Disease and associated health problems. My health literally changed overnight, and I start dropping weight like mad. Part of the reason that I can't eat is because of the reactions that I have from food,...
  11. GlutenWrangler
    It must be very difficult for you to watch your children deal with their illness. I can only imagine what it is like to have to watch your kids suffer. I'm sorry to hear that your daughter's treatment has not worked so far. I can understand how you are losing patience with doctors. It can be so frustrating dealing with them sometimes. But I sincerely hope...
  12. GlutenWrangler
    Kassandra, I'm sorry to hear about the problems you have been having. At some point it becomes impossible to follow such a rigid diet. I only get a drink as well when I go out to eat with people, but the people I'm with know that I don't have an eating disorder. But I can understand how uncomfortable it must be when your family thinks that you have an...
  13. GlutenWrangler
    I'm so sorry to hear about your children. Refractory Sprue can be a devastating illness. So your children didn't improve at all on a gluten-free diet? I improved a little bit, but then it just went back downhill again. I'm just so surprised that your children's doctor has settled on a Refractory Sprue diagnosis while they are still so young. I'm not doing...
  14. GlutenWrangler
    Gracie's Mum, I'm so sorry to hear about what your daughter is going through. She's definitely not alone in the way she feels. I was high functioning like your daughter about 4 years ago, then it all went downhill. I was admitted into Pharmacy School in Boston, but my illness prevented me from going. That was tough to deal with. It really sounds like...
  15. GlutenWrangler
    Yeah it's kind of true that I'm not really digesting anything. But enzymes have a lot of helpful properties when taken on an empty stomach as well. They clean up a lot of the trash built up in your system. Papaya isn't a bad idea either. I bought myself a juicer over the summer, so I could juice it. I'm just not sure if I'll be able to tolerate it, because...
  16. GlutenWrangler
    Good luck Lisa, you deserve it. -Brian
  17. GlutenWrangler
    Yolo, I actually have a really small family, and it turns out that I'm an anomaly. Nobody on either side of my family has dealt with anything remotely close to what I'm dealing with. My sister actually had some GI problems for a while, but they went away. Although I do believe that she could be a latent Celiac, especially considering she has the DQ2 gene...
  18. GlutenWrangler
    Yolo, Don't worry, your suggestions didn't upset me. If I came across that way, I'm sorry. I really didn't feel good last night. But you had said that I might want to rethink the long term effects of my IV Nutrition, as if I had a choice. And in all honesty, there is no alternative to it right now, even if it's killing me. Believe me, I've had my share...
  19. GlutenWrangler
    I'm glad to hear that your brother's kidney function is rising again. But for me, the only problem with that is I can't follow a special diet. My diet is limited to what they give me in my IV. However, my Nephrologist was telling me that kidney function can drop if there isn't enough protein in the diet. Maybe if I was provided more protein through the IV...
  20. GlutenWrangler
    Honestly, the first time I called I think I spoke with a pharmacist, as crazy as that is. You would figure that a pharmacist would be able to help. The way he put it was that he couldn't be 100% sure of which raw materials were provided to Ethex by the distributers. Maybe I'll have some better luck the second time around though. -Brian
  21. GlutenWrangler
    Judy, I hope everything goes alright for San. I'm definitely going to try my best to get diagnosed with SOD. I'm still not sure which doctor I'm going to see, but I'll definitely be seeing someone soon. And then I can get the ERCP over with to see if I have it. I agree that it can only help my SSI case. Thanks! -Brian
  22. GlutenWrangler
    Actually that's a really good idea. I'm sure someone at Ethex knows what they're talking about. But by the reaction that I had, I'm 95% sure that there was gluten in those tablets. But I am going to call them again, just to confirm it. I just think with all of the new focus on allergens, the Ethex representatives should know that type of information for when...
  23. GlutenWrangler
    Regardless to whether the sugar IV diet is bad or good, it really doesn't matter because I don't have a choice. There is no alternative at this point, or in the foreseeable future. Without it, I would die. As for the vitamins, I get all the vitamins I need through the IV. That includes vitamin D and B-vitamins. I have no deficiencies at this point. ...
  24. GlutenWrangler
    I really don't think that the Dilaudid is causing my kidney function loss. I've been taking Dilaudid for over 7 months, and the loss of kidney function is a very recent occurance. I really think something else is causing it, mainly because I've always tolerated medications well. I've taken drugs with much more potential for kidney damage than Dilaudid. Personally...
  25. GlutenWrangler
    I'm all set now. I'm taking the Mallinckrodt brand now, and it has no allergens in it. The drug itself is fine for my system, and doesn't give me any adverse reactions. Actually it works with my system better than any other pain medication I've taken, and I've taken a bunch of different ones. So I'm not being poisoned by it anymore. The trouble for me...
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