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About Foxfire62

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  1. Nik, Dr. Semrad of University of Chicago specializes in it, but I highly recommend Dr. Mark DeMeo of Rush University because Dr. Semrad did not make an effort to diagnose my bacterial overgrowth, whereas, Dr. DeMeo told me of other complications and recommended ruling out other problems as well. I know this is a late response, but just in case you've yet to find a good answer or are not satisfied with whom you are dealing, I highly recommend him.
  2. The only way to know for sure if you have celiac disease is to stay on a gluten diet for awhile and get biopsied. If you felt amazing on a gluten-free diet, why not just stay on it and assume you have it? Or at least assume you are "gluten intolerant."
  3. The only way to know 100% is to have a biopsy of the small intestine; you could still have a negative panel and have celiac disease. If that has yet to be done, I would recommend it. Another thing that could be happening is that you might have bad bacteria in the gut, or you could have bacteria that should be in the colon interfering w/bacteria in the small intestines (bacterial overgrowth). If you have Bacterial Overgrowth, a simple hydrogen breath test should be able to reveal that for the most part, and it's easy to resolve by giving antibiotics. What about mast cell disease? Were you checked for that? Leaky gut? Just a few other options to consider. Ulcerative Colitis? Crohn's disease? I'm not sure what you might have, but you might be able to help your daughter if you, yourself, were helped. Again, although a blood panel is useful, it can produce negative results, and you could still have celiac disease. If you opt out of not doing the biopsy, then you would have to assume you have celiac disease and remain on a strict gluten-free diet. The same for your daughter. And, lastly, although your doctor may be very good, if he told you you were negative for celiac disease without recommending doing a biopsy, you need to change doctors and find a celiac disease specialist!
  4. If I were you, I'd find a nutritionist who knows celiac disease quite well. My first experience with a nutritionist was a laugh. She just read off of some pages and provided me some copies of things to read that I already knew about. If you find a nutritionist who had celiac disease, you would really be in luck. I found one, and I went through some rough spots in my recovery process (still going through them), and thanks to her, I am now on a diet for people who get hypoglycemic. It appears, depending on severity of damage and your age, if you've lived with celiac disease a long time and start healing, your intestines don't really know how to work properly, and your body reacts in a way that it's not used to. Because of this, I've become hypoglycemic, so now I am following a diet that is higher in protein and allows complex carbs. This has helped me tremendously. Had I not had her a nutritionist, I would be taking Xanax all the time as the doctors thought I just had an anxiety issue. But my nutritionist, because she went through something similar, understood what I was going through and recommended a diet change. It has helped me a lot. Although I'm not fully recovered and still suffer complications, I know I can turn to her for help. Again, if you can find one, go to a nutritionist that is either well-versed in celiac disease or has had it herself/himself.
  5. I would say you should first decide whether or not you want to be 100% diagnosed with celiac disease. If so, you need to stay on a gluten diet until blood tests and biopsies of your small intestine confirm you have the disease. I would highly recommend you have this done. I understand how long it can take to confirm. I started having the strangest symptoms in April 2008, and I wasn't officially diagnosed with the disease until August 2008; that's a long time. Get referred to a GI immediately. Request the celiac blood panel, and even if results are negative, push at the same time you get your blood panel to be scoped and biopsied. Once you are confirmed, go on a strict, VERY strict gluten-free diet. How quickly you recover will be determined by your age and the severity of damage. It can take an adult anywhere from 1-2 years to recover. Young adults or children can take far less. Until you are recovered, stick with the very dry basics; fresh fruit, vegetables, salad (I'd even stay away from dressing at first), and the freshest of meats. Stay away from processed food!!! Eat only gluten-free breads and pastas. Eat a lot of rice/brown rice/quinoa. I would recommend initially staying away from restaurants and fast food joints, even if they offer gluten-free menus. The reason I say this is because you will be new to all of this, and you should concentrate on recovering and learning more about what you can and cannot have. It is apparent by your post that you aren't too familiar with some of the possible "hidden" sources of gluten (i.e., french fries). Learn about cross-contamination, because this is extremely important. Do this until you are healed. You can always experiment later once your system is working properly and you understand all the hidden sources of gluten. Then, you should slowly venture out and try restaurants and introduce other gluten-free grocery items in your diet. Another thing to understand is, if you are indeed a celiac, you can develop intolerances you've never had before to some of the more common allergens, such as lactose, soy, eggs, nuts, etc. You might want to stay away from these until your intestines are fully healed as well. I am still recovering. I've gone from severely blunted villi to mildly blunted villi, but I continue to have problems digesting fats. It can be a rough road to recovery, and you needn't complicate it, which is why I recommend you stick to the very bland basics before venturing onto foods you believe to be gluten-free. This way, once you are healed, you will know immediately when you are glutened and understand its affect on you. Those are my recommendations. Good luck!
  6. You have genes and a positive blood analysis that indicate you have a great likelihood of having celiac disease. If you do not wish to be biopsied, just assume you do, be very strict with your diet, and stop worrying. I have celiac disease, and my intestines are beginning to work, and I'm still having complications despite my intestines slowly starting to heal and eating a strict gluten-free diet. I've been in and out of hospitals. Although I've been slowly getting better, I'm by far not perfect and still have good, bad, and inbetween days. I wish I had your worry. Consider yourself lucky, stay on a strict gluten-free diet, and get on with your life.
  7. Get checked for celiac disease as soon as possible! If you have it, you can only begin to feel better when you start eating correctly!
  8. I am a recovering celiac, dx in 08-08. My villi went from severely to mildly atrophied/blunted. Right now, I am experiencing problems when drinking. I drink water, and I have been burping a lot and feeling almost like a lump in my throat. When I get this, my blood pressure appears to drop, and I feel tired. I don't understand why that is. I did have back-up/constipation problems, but I'm now having daily BMs. Has anyone else experienced anything similar?
  9. My villi were so severely damaged, if it says natural falvors, I tend to stay away from it.
  10. As far as I know, you do not need to be concerned about soy ruining the villi of your intestines. Are you sure you're allergic to soy or just intolerant? Many celiacs are intolerant until their intestines heal. But if you don't feel good eating soy, don't do it! Look for options. But soy does not contain the gluten protein that celiacs tend to have a negative reaction to.
  11. Depending on your age and severity of the damage in your intestines should you have celiac disease, it can take from 1-2 years to feel better again...and that's with a strict gluten-free diet. I was told by my doctor after being biopsied that I would feel better immediately after going on a gluten-free diet. HA! It just shows you how much these doctors sometimes know. And with all my symptoms, which were not typical of celiac disease, my doctor didn't even think of the disease until I mentioned I wanted to get tested for a wheat allergy. If your doctor appears unwilling to help you, then get a new doctor. Otherwise, raise the money somehow and get tested. (Can't family help you?) The problem with not having the money and feeling awful is that you are going to continue to feel awful if you don't find out what the problem is. What's more important to you? Your health? Or not being able to pay for something. Try and get a loan, put the payment for tests on a credit card, ANYthing, but find out what's wrong. I think, in the long run, it will be worth your while. Btw, be sure you're on a gluten diet should you opt for biopsy to see if you, indeed, have celiac disease. Otherwise, you may have a negative result. Good luck!
  12. As far as I know, until your gut is healed, you don't know. The best thing to do is continue to eat a strict, gluten-free diet. Also, anything that causes you discomfort, stay away from. For example, many celiacs become intolerant to lactose, soy, eggs, nuts, and other allergens. I am one such person. Although I can eat eggs and nuts, I have difficulty digesting them. Soy causes burning in my throat. Likewise lactose, but I am beginning to tolerate small doses of lactose, such as found in yogurt. The thing is to find out what works for you. Depending on your age and severity of damage, it can take as long as 1-2 years to heal. Good luck! Everyone here understands how difficult this is. Keep your head up!
  13. The whole point to celiac disease is that gluten destroys the villi of the small intestine. Without the villi, you will have difficulty absorbing nutrients. So, if you have a deficiency, by all means take supplements. Taking the supplements will not affect the outcome of your biopsy. Eating the gluten is necessary to ensure a proper biopsy, especially after you've been gluten-free. How long you need to do this is a topic I'm not sure about. Many say eat at least 2-4 pieces of bread daily for about 2-4 weeks. I know what it's like to feel miserable until you're diagnosed. But if you need a confirmation, then absolutely do it. Otherwise, just assume you're a celiac and remain on a gluten-free diet for life.
  14. Blood panel could show false negative. It's not a 100% diagnosis. The only way is through biopsies of the duodenum, and for an official diagnosis, yes, you would need to be on a gluten diet for awhile. If you're not comfortable with this person, do change doctors. One that is well versed in celiac disease is recommened. Lactose/soy intolerance does happen and supposedly can go away. I know that my lactose intolerance has improved since last year. Good luck!
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