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GlutenWrangler

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    My family, Playing Blues Guitar
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  1. WW340,

    My vitamin and mineral levels have been low too. I also have a lot of problems with my electrolyte levels. I have to have mega doses of sodium and potassium in my IV Nutrition to keep my levels up, and they still dip below normal. My symptoms include abdominal pain, bloating, gastroparesis, malabsorption, diarrhea, fatigue, and skin manifestations. My fingers get really itchy and I have extremely dry skin on my hands. Skin problems are associated with Eosinophilic Gastroenteritis

    It sounds like Eosinophilic Gastroenteritis is definitely a strong possibility for you. Your test results are definitely indicative of it. I don't know if I have been properly tested for it. From what I've read, it can be easily overlooked if a doctor isn't experienced with it. My doctor is having me do a stool test for eosinophils. Then hopefully I will see the doctor who diagnosed the kid from the article. Hopefully then I will get the blood test and biopsy to see if I have it.

    I also had some relief when I started the gluten-free diet. Things got better for about 3 months, and then I started reacting to just about everything I ate. I lost a ton of weight, and I was literally starving to death. That's when I was hospitalized. I was put on a liquid diet, and then IV nutrition. Like you, I felt much better on the liquid diet. I even had normal stools for a month after I got out of the hospital. I also attribute that to the fact that I had to clear my system out for a colonoscopy. But it only lasted a month.

    I've never heard of "burned out Crohn's" or MALT lymphoma...But when I was in the hospital, Crohn's and cancer were both ruled out for me. I was even tested for HIV because they couldn't figure out anything intestinally. But my doctors also agree that I definitely have more than Celiac Disease.

    Our cases are remarkably similar. I feel pretty much certain that I have Eosinophilic Gastroenteritis, and I'd be willing to bet that you do too, especially with your test results. Hopefully our doctors can do something to help us. I appreciate you sharing your experiences with me. It helps to know I'm not the only one dealing with this. Good luck with everything. Take care

    -Brian

    Gabby,

    That's a good idea. I should run both options parallel. At least I can get the process started by contacting the show to see what they have to say. Do you know how long it usually takes to get on the show? It would be great if they could help me out. Thanks,

    -Brian


  2. I'm glad to hear that the gluten-free diet has helped you out so much! It definitely sounds like it would be a good idea for you to commit to the gluten free diet for life. It's great how the gluten-free diet ends up forcing you to cook healthier and tastier things for yourself. Unfortunately, I don't know anything about Thai food, but I'm sure someone will come along who can tell you what is safe. I hope the improvements continue for you. Take care,

    -Brian


  3. Gabby,

    Thank you for your reply. I appreciate it very much. I try to keep a positive attitude. After all, as bad as it seems, it could be much worse. I just try to be grateful for all of the positive things in my life, so it doesn't really get to me too much. I don't know if I'd be a good motivational speaker! But I would like to help people who find themselves in situations like mine.

    But anyway, I never really thought about it, but contacting Dr. Phil is a great idea! Thank you for suggesting that to me. I can definitely imagine them being seriously interested in my case. And I'm sure that they would be able to help me if I was to make it onto the show. The only issue that might be a problem is travel. I live in Massachusetts, and the show is taped in Hollywood. I'm not sure if I would be able to take all of my IV Nutrition and supplies with me across the country, because IV Nutrition has to be refrigerated. But I


  4. Thanks for the links. I've done a lot of research on Eosinophilic Disorders, but I've never really heard anyone's experiences with it. I think that my case is pretty severe, because I'm unable to eat anything at all. The kid from the article was still able to eat, although he definitely had a lot of problems with food.

    I saw my doctor today, and she actually has a patient with Eosinophilic Esophagitis. So at least she has some experience with it. From what I've read, steroids like Prednisone are the main treatment for Eosinophilic Disorders. But I've tried Prednisone in the past and couldn't tolerate the side effects. So I don't know if there is anything that will help me to eat again.

    Yes, gastroparesis has been an issue for me. It comes and goes though. Gastroparesis is one of the symptoms associated with Eosinophilic Gastroenteritis, which would explain why I have it. I truly believe that I've finally found the reason for all of my problems. Hopefully there is some way to treat it without steroids though. But yes, I'm definitely saving my teeth from a lot of wear and tear!


  5. Blood tests are notoriously inaccurate for allergy testing. If you're feeling that tired after eating certain foods, you're most likely either allergic or intolerant. I have had the same exact reaction to foods that I'm allergic to. Skin prick testing is much more accurate for food allergies. If you haven't already, you might want to see an allergist. If you continue having these reactions to certain foods, you may want to consider eliminating those foods from your diet, at least for a little while. This will allow your system to calm itself down. Then you can re-introduce them one by one to see if you still have that reaction. Take care,

    -Brian


  6. I was thinking about how crazy it is that in two months from today, it will be two years since I've had anything to eat. That's 730 days with no food, and still no diagnosis. I'm not complaining about it though, because I'm much happier and healthier than I was when I was still able to eat. Although I did think that I would have a diagnosis by now. It's just strange for me because it was one of those instances where I had to step back and say "WOW", it has really been two years. Anyway the point of this is that I think I finally have an answer as to what is going on with my system. I came across an article in the paper about an 18 year old kid who has the same exact symptoms and problems as me. He was diagnosed with Eosinophilic Gastroenteritis. I brought the article to one of my doctors, who agrees that I probably have EG. So he is sending me to see the doctor who diagnosed the kid from the article. It's not a diagnosis that anyone would really want, but it's a diagnosis nonetheless. Anyway I was wondering, does anyone here have any personal experience with Eosinophilic disorders? It's supposedly very rare, but I figured that it is possible that someone here might have it, or know someone who does. Plus, it had been mentioned to me a few times in the past by a few members of this forum. Any information or personal stories would be greatly appreciated. Thanks!

    -Brian


  7. Many people go through a period of worsening symptoms when they start the gluten-free diet. Now that your body is no longer being assaulted by gluten on a daily basis, it has the opportunity to purge itself of all of the toxins that have built up over time. On top of that, many people also experience gluten "withdrawal". This process can make symptoms much worse for a brief period of time. Think of it as your body in recovery mode. Plus, your body no longer has to adapt to dealing with gluten, so if you do consume any gluten accidentally, your reactions will most likely be more severe than they used to be before you went on the gluten free diet. So overall, you're most likely experiencing a normal reaction to the gluten-free diet. If your symptoms continue for an extended period of time, you might want to check for hidden sources of gluten somewhere in your diet. Since you have just started the diet, hopefully someone can direct you to one of the "Newbie Kits" floating around here. Good luck,

    -Brian


  8. Enterolab cannot diagnose Celiac Disease...only gluten sensitivity. For $99 you will be tested for gluten sensitivity. It is up to you to decide whether or not you believe that Enterolab testing is credible. Blood testing and biopsy are the standard testing methods for Celiac Disease. Stool testing is a new, and unproven method. Dr. Fine from Enterolab has not published his research for peer review, after years of promising to do so. I'm not familiar with the Biocard Celiac blood test, but I think your best bet is to go to your doctor, and ask him/her to order a full Celiac Panel. If your results are positive, your doctor can perform a biopsy to confirm the diagnosis. If your results are negative and you are still experiencing symptoms, maybe then it would be a good idea to pursue alternative testing. Then there's always the option of just going on the gluten-free diet and seeing if it makes you feel better. You don't need an official diagnosis. Good luck,

    -Brian


  9. I definitely understand what you're going through. I went through the same thing. I initially improved on the gluten-free diet, but then multiple food allergies began to surface. I dropped weight rapidly. Eventually I dropped down to 105 pounds. I was literally starving to death. I was finally hospitalized, and put on IV nutrition. That was almost 2 years ago. I'm still on IV nutrition, and I haven't eaten a thing in almost two years. My case is very extreme, and I don't mean to scare you. You shouldn't think that what happened to me will happen to you. Keep in mind that the blood tests for food allergies are notoriously inaccurate. And even though you have positive results, it doesn't necessarily mean you can't eat those foods. But this is something for you to discuss with your doctor. I just wanted to let you know that there are others out there who have gone through what you're going through. Good luck with everything,

    -Brian


  10. Alison,

    In my opinion, you shouldn't bother going through Enterolab. Their testing methods aren't proven. Dr. Fine still hasn't gotten around to publishing his research, after years of saying he's "about to publish". There's a reason for that. You already know that your son has issues with gluten. Putting him back on gluten will just cause him to suffer needlessly. If you're dead set on putting him back on gluten, do it for traditional testing. It may take 6 months or more, but at least the diagnosis will be solid. But honestly, I think your best bet is to just put your son on a gluten-free diet. You don't need an official diagnosis. And you're right. The testing that was done on your son couldn't possibly be accurate because he wasn't eating gluten. The doctor who told you that your son could not possibly have Celiac Disease is sadly mistaken. Any good doctor should know that a patient needs to be consuming gluten in order for the tests to be accurate. You may want to find a new doctor. Good luck,

    -Brian


  11. If you don't follow the diet, you are setting yourself up for some major issues in the future. Celiacs have a higher risk for cancer than non-Celiacs. The only way to reduce that risk is to faithfully follow the diet. Even if you do not have symptoms, you are damaging your intestine each and every time you choose to eat something with gluten. In time, you could develop osteoporosis, malnutrition, lactose intolerance, neurological problems, psychiatric problems, and cancer. Many Celiacs experience worsening symptoms when they begin the diet. It is just your body's way of detoxing. Eventually your symptoms should dissipate. You might also want to look into other food allergies and intolerances if your symptoms continue. Nobody here can give you percentages because everyone is different. There's no way to accurately predict what your body might do. But if you want to live a healthy life, and avoid complications in the future, do yourself a favor and stick with the diet.

    -Brian


  12. 3. Don't you think it's interesting that we've attracted the attention of an EVOLUTIONARY BIOLOGIST (lbd) who clearly knows their stuff and noones saying 'Ooo ooo, here's someone who can help us now!'?

    Ok I lied. 4th question: Since when was 'peer-reviewed' ANYTHING worth crap? Isn't that what got all those people killed on Vioxx?

    No, not really. An evolutionary biologist can't really help us at all with this. The only person who CAN help us with this is Dr. Fine, who refuses to publish. So in this instance, like most other instances, 'peer reviewed' would be worth a hell of a lot, especially to us. Peer review is essential to the advancement of medine. It is an essential communication tool. The medical community needs peer review to evolve. I have a rare kidney disorder, and the doctor who diagnosed me with it is one of the few experts in the country on this disorder. He has learned about different treatment methods for me by reviewing the research of other experts. He also formulated his own methods, which he always publishes. I'm sure the doctors who read his reports think it's worth something, as I sure do.

    Vioxx killed people because the FDA is a disgusting, corrupt organization. It had much more to do with money than research. Drug companies are very intertwined with the FDA, and very powerful. Doctors prescribed Vioxx because the research said it was safe. It never would have happened if the FDA actually did its job.

    -Brian


  13. Many people go through what you're dealing with. It takes a while to make the adjustment and accept what your life is going to be from now on. Becoming gluten-free is a lifestyle, but it's not a death sentence.

    There are plenty of restaurants with gluten-free menus out there. Some of the major chains that have gluten-free menus include: Outback Steakhouse, Carrabbas and Chili's. You can also check out www.glutenfreerestaurants.org and search for your area. You can always call local restaurants to see if they accommodate people with food sensitivities.

    I'm not sure about where you live, so I'm not sure about stores in your area. Do you have a Whole Foods Market in your area. They have just about everything.

    Travel is definitely possible with Celiac Disease. My Mom has Celiac Disease, and she and my Dad have gone on three cruises since she was diagnosed. The ship accommodates people with food sensitivites. She was also able to find places to eat when she was off of the ship for visits to various countries. They went to South America, The Caribbean, and Alaska. I'm positive that you'd be able to find places in Europe, where Celiacs are common. If you have to, get a travel agent so that they can help you with the arrangements.

    This is a tough period for you, but I promise you'll get through it. I hope the information above helps you. Take care, and good luck,

    -Brian


  14. I'm pretty sure she's telling the truth guys. I don't think anyway would waste that much time on fake posts.

    Minton,

    First I have a couple important questions. Were all of your pregnancies caused by the same guy? Did you ever get pregnant with your current fiance? Like tarnalberry said, it could just be a genetic mishap with the dirtbag who raped you.

    I think it's a good idea to take a break from sex for the time being. You have gone through multiple physica and emotional traumas. It's no wonder that your body is such a wreck. You need to restore your body's equilibrium. That means avoiding intercourse (for now), eating as healthy as possible, returning to a weight that is ideal for your body type, and removing as much stress as possible from your life. I understand that you are searching for answers for your future, but the fact is that you don't know how your body would react to a pregnancy if you were is stable physical and emotional health. This is an opportunity to work on YOU. When the time is right, and you are healthy and in a better place, then you can try to get pregnant, and see what happens. By then, you'll be healthy, and your body can better cope with carrying a baby. If you miscarry again, and I sincerely hope you don't, then you can start looking for causes. But at that point you will have ruled out many of the causes for the miscarriage, just by being healthy and emotionally stable without the current stresses that you have now. But overall, give yourself the attention for now. That's what's most important. Good luck with everything.

    -Brian


  15. I have tiny pinkies, especially for a guy. My pinkies are smaller than those of some girls I know. My fingers are a little small in general. Which is kind of a curse for me because I play guitar, actually I'm trying to become a professional musician, and having large hands makes things so much easier for guitar players. Jimi Hendrix had 11-inch hands! I have to work extra hard to play his music. :(

    -Brian