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GlutenWrangler

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Everything posted by GlutenWrangler

  1. GlutenWrangler
    Keep in mind that a negative blood test means nothing. You still could have celiac disease, especially considering that you are intolerant to wheat. Make sure you are tested by a doctor who fully understands celiac disease testing. Good luck, -Brian
  2. GlutenWrangler
    Lowercase letters work just as well! It looks like you're screaming at us. But in all seriousness, you have to see a new gastroenterologist. Nobody deserves to be treated like a joke by their doctor. Don't allow yourself to be treated that way. There's definitely a better doctor out there for you. Good luck, -Brian
  3. GlutenWrangler
    Lori, I would think that you would get all of your previous symptoms back, including constipation and insomnia, if you were still consuming small amounts of gluten. I think you should look into food allergies before you torture yourself with gluten. Good luck, -Brian
  4. GlutenWrangler
    Thanks Laura
  5. GlutenWrangler
    Hello, I was just wondering, how does one go about becoming a moderator on Celiac.com/Glutenfreeforum? I don't know if I would qualify as one, but it is something I would definitely be interested in because I spend a lot of time on this site. If anyone could let me know, that would be great. Thanks, -Brian
  6. GlutenWrangler
    Thanks for the recommendation. It's good to hear that they are well-versed in Celiac Disease. I just hope I can find someone who will go beyond the standard tests and figure something out. The only thing that I'm concerned about in Boston is that the doctors are extremely full of themselves. And because of that, if they can't figure out what's wrong with...
  7. GlutenWrangler
    Hello Everyone, I saw my doctor yesterday so I figured I would give you guys an update. I talked to her about some of the illnesses that I was told about by some of you, and an illness that I researched on my own. 1.) Sphincter of Oddi Dysfuntion - This is the illness that I had researched. It causes severe pain similar to gallbladder attacks because...
  8. GlutenWrangler
    I know a couple people on here have Newbie kits, which are a hige help when first starting the diet. So hopefully one of them sees this post. You definitely don't need to get tested every year, unless you want to check to see if the damage has healed. But that's up to you. Just do your best to eat gluten-free, and watch out for cross contamination. And if...
  9. GlutenWrangler
    If I haven't been tested already for Lyme, I'm sure my doctor will test me for it. I'll tell her about Igenex. I'm sure if I did have it, it could definitely worsen the refractory sprue. Especially if it affects the gut. I would say in your case it is definitely worth checking out if you have flattened villi. There's a good possibility that you do have flattened...
  10. GlutenWrangler
    Robin, You may have Refractory Sprue, which is what I have. It is rare, but its defined as: presence of persistently damaged villi in the small intestine that are not repaired after the gluten free diet has been successfully initiated and/or maintained, an increased presence of intraepithelial lymphocytes (IEL) in the small bowel, and severe malabsorption...
  11. GlutenWrangler
    Feel free to tell her about me, because I don't have the 2 main genes either, but I'm definitely a celiac. Maybe knowing about someone else who is like her will help to convince her that celiac disease is not limited to 2 genes. Also, one would think that she would want to do something about the lesions on her face, and considering she's a med student, she...
  12. GlutenWrangler
    That makes a lot of sense. Doctors are notoriously bad at diagnosing celiac disease, never mind refractory sprue. So I'm sure there have been a lot of cases where people have been diagnosed with AE when they actually have RS, and vice versa. I think it all depends on what the doctor is looking for, and how they interpret a patient's medical history. Either...
  13. GlutenWrangler
    It's true that just about everyone alive has consumed gluten in some form. But it is possible that Refractory Sprue is gluetn-dependent, and Autoimmune Enteropathy is not. It's just tough to make that determination. -Brian
  14. GlutenWrangler
    Well the histology of both shows villous atrophy, and both do not respond to dietary changes, so it seems possible that they are one in the same. But at the same time, you have to develop celiac disease first, in order to have refractory sprue. And you have to eat gluten to develop celiac disease. So if someone who is predisposed to refractory sprue never...
  15. GlutenWrangler
    I'd like to know how they would differentiate between Refractory Sprue and Autoimmune Enteropathy. I have had multiple endoscopies, and AE has never been mentioned. So I guess that would mean that I don't have it. Especially since my last endoscopy was done in Boston at Beth Israel. I should try to find a specialist in Refractory Sprue. It's just tough...
  16. GlutenWrangler
    Scary stuff. I should mention this to my doctor. Maybe it's something she will try.
  17. GlutenWrangler
    I was hoping that my doctor would try another drug in prednisone's place, but he just gave up on that kind of treatment for some reason. As much as I hope that I don't have Autoimmune Enteropathy, it would be nice to have a more definite treatment plan. Right now I'm not getting any useful treatment. My doctors say they want me off of TPN asap, but nobody...
  18. GlutenWrangler
    Suzi, You have to get out of that pizza place! Every time you breathe in the flour in the air, you are ingesting gluten. You might as well be eating a cracker every day. I think once you get out of the pizza place, you will start to feel better. When I get glutened, my throat hurts too and my lymph nodes swell up. I also get those bumps on the back of...
  19. GlutenWrangler
    The funny thing is that after I told the doctor that I couldn't take prednisone because of the side effects, he gave up on steroids and immunosuppressants. I figured he would try another drug with less side effects. So unfortunately I've never tried budesonide, or anything else for that matter. Ryebaby, I've never heard of Autoimmune Enteropathy, so I'm...
  20. GlutenWrangler
    I guess the moderators weren't having it. But anyway, yes, one of my doctors prescribed prednisone, but I couldn't handle the side effects. Although it did give me more of an appetite. I really don't know how I will ever be able to eat at this point. Hopefully my doctors can figure out something. -Brian
  21. GlutenWrangler
    I'm going to re-post this thread in the "coping with" section.
  22. GlutenWrangler
    As much as I wish it were not the case, a couple of my doctors think that I have it. Has anyone else here been diagnosed with refractory sprue? If so, have you received any treatment for it? Thanks, -Brian
  23. GlutenWrangler
    I actually have no idea if I have been tested for Lyme disease or mercury toxicity. I should ask my doctor, especially about Lyme disease because one of my dogs had it. I did have a pseudomonas infection last May, but the levaquin cleared it up, so I don't think that it is still affecting me. But at least now I have some things to discuss with my...
  24. GlutenWrangler
    Let me just clarify, I made that post about Enterolab a year ago. I have been evaluated and diagnosed after the Enterolab diagnosis. While it is true that I don't have the "main" celiac genes, I did have flattened villi, and I definitely have celiac disease. There really is no question at all about it. More than one of my doctors believes I have refractory...
  25. GlutenWrangler
    It's great that you have cut out sugar, along with gluten, dairy and soy. But cutting out sugar is only the first step. By cutting out sugar, you are keeping more candida from growing, but you are not killing what's already there. Now you need to use something to kill the candida. Some people use probiotics, others use prescription antifungal drugs, and others...
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