GlutenWrangler

I've never heard of this. It doesn't seem too likely to me. I definitely wouldn't worry about it. -Brian

I'm from Western Massachusetts too. Westfield, actually. Choice Health in Westfield has some gluten-free products, along with the local Big-Y and Stop & Shop. But the best place in the area is definitely Whole Foods in Hadley.

How long have you been on the gluten-free diet? Is it possible that you're accidentally consuming gluten? If not, you may have other food sensitivities. -Brian

Ok, well thanks again. I'm going to write in and see what they have to say. I'll have to report back when I get a response. -Brian

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

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

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

Thank you so much, C! You're the best! (But you already knew that)

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!

Greg, I'm so sorry to hear that. I think I can speak for us all here when I say that we wish you the very best through this very difficult time, and if you need anything at all, we are here for you. And thank you very much for sharing that valuable information with us. Good luck with everything. My thoughts are with you. -Brian

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

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