This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
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
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,
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,
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
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!
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.
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,
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!
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,
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,
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,
Definitely a cash grab...and it is completely unnecessary. Like Lisa said, if you got sick from gluten, it will run its course. There's no use in wasting your money. I can't stand these health care "professionals" who prey on sick people just to make a buck. It is so sleazy.