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About ravenwoodglass

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  • Birthday July 31

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  1. It is very important that you get her back on gluten immediately. She needs to be still on gluten for any blood work or an endoscopy that the GI will want to do. Call the Gi's office and ask to speak with a nurse and tell them about the probiotic, vitamins and digestive aids that you are giving her. The doctor may want to run vitamin panels and the supplements could interfer with getting her correct levels. The nurse will likely need to call you back after he/she talks to the doctor. She can get probiotics from the Kombucha, yogurt, saurkraut or any other fermented food. I am not a fan of using the gene tests as part of the diagnostic process. There are cases when diagnosed celiacs have not carried the most common celiac associated genes. While it is rare I am one of them. Research is still going on concerning all the genes associated with the condition. It wasn't until a few years after I was diagnosed the my gene finally was recognized as associated. I hope the GI gets you in soon. Do make sure to keep up with the gluten. Just a couple pieces of bread worth of gluten should be enough. It is very important she have a formal diagnosis for accomodations at school, hospitals etc.
  2. Go with hard cheese like cheddar, romano and parmesan for example. You want to avoid cheeses that are soft like mozzarella or feta. You may also find you can tolerate butter okay. It has very little lactose or casein. Yogurt should also be okay lacose wise. Start slow with dairy and perhaps do just one thing at a time. As far as brands go almost all are likely going to be okay. I usually go with either Kraft or Wegmans. Avoid any cheese with beer added of course.
  3. Welcome George. Having a celiac diagnosis at any age is tough but it is very hard when you are in your teens. Unfortunately it seems so much revolves around food. All we can really do is try to keep food on us as much as we can so when others are eating stuff we have something also. Eating before we join friends can help so at least we aren't hungry. Maybe have a slice or two of gluten-free pizza before you go. I keep 'treat' foods with me, stuff like chocolate, safe cookies or granola bars etc. Do talk to your doctor about the puberty issue. Celiac can mess with our hormones but that should resolve after you have healed. You may even find that you have a growth spurt before too long. Hang in there, the fact that you are feeling better is a good thing so concentrate on that if you should happen to be tempted to eat something risky. You may also want to post in the Post Diagnosis or Teen section as those may get more notice and replies.
  4. Welcome to the board. You may have some gluten sneaking in that is keeping your antibodies active. If you are feeling better your antibdies may just be slow to come down. Be sure to read the Newbie thread at the top of the Coping section for some good info.. Unless you did a gluten challenge chances are your biopsy was a false negative because you have been gluten free for 6 months. It is also possible that damage is spotty at this point and a damaged spot was missed.
  5. With all the stress you are under this is likely a tension headache. Do you do anything for relaxation? Yoga, meditation etc? That might help. Also if your insurance will cover it acupuncture might be quite beneficial. It helped me a great deal before diagnosis.
  6. You need to keep in mind that now that you have been diagnosed and have the chance to heal your chances of developing another AI disease goes way down. There are members here who went undiagnosed for decades and didn't develop cancer, diabetes, etc. Are there some that will develop some other AI disease years after they have healed, sure. But they might have gotten one even without celiac. Celiac is the pits and it does make having a social life more difficult when food is involved but things are much easier now than they were even 14 years ago when I was first diagnosed. Restaurants and people in general are becoming more knowledgable every day.
  7. Syptoms can come on suddenly and it is pretty common to see symptoms increased after a severe stressor like a surgery. Talk to your doctor. If your blood tests were strongly positive he may give an official diagnosis based on your relief of symptoms gluten free, drop in antibodies on repeat panel and family history. It is important to have that official diagnosis so do not go gluten free until after you know if you are going to opt for the biopsy.
  8. You really need to get back on the diet. Will it 'cure' everything that is wrong with you or not I certainly can't say. However celiac has over 200 symptoms and can impact all areas of the body not just the GI tract. That includes the nervous system. There is a lot to the diet. More than just food. The trouble is well worth it in the end though. Once folks are gluten free when they get glutened the reactions can be even worse than the symptoms they had before they went gluten free. When glutened it causes a spike in antibdies flooding the system. This is a good thing as it is your bodies way of letting you know not to do it again. Please read the Newbie thread and please get back on the diet.
  9. It sounds like you have a good doctor. Your body is already telling you that the diet is working and from what your doctor said he is going to give you the official diagnosis when your levels are down at your repeat blood test. Stay strict with the diet, enjoy feeling better and I think you will have your official diagnosis soon.
  10. Welcome to the board. Your antibody tests are still positive. Have your numbers gone down from when you were diagnosed? It can take a long time to heal but you should be feeling at least a little better. How strict are you with the diet? Do you live in a house with gluten eaters? If so what precautions are you taking? Do you eat out at restaurants or non-celiac folks homes? You should read the Newbie thread at the top of the Coping section to make sure that you are doing all that you have to do to keep yourself safe. You mention having other issues besides celiac. You may be surprised how many of those clear up once you have healed.
  11. I also only really eat one meal a day and always after I get home. I never really feel hungrey. I call it 'Pavlov's dog in reverse'. I think it comes from so many years of food making me sick. I have gotten to the point where I now at least can eat a sandwhich and some fruit during the day but it wasn't a quick process. When folks get like that it is very important to make sure that one meal has a good amount of both calories and nutrtion. If your diet is how you describe you are starving yourself. You need to get yourself used to eating again. What helped me was carrying a baggie with some nuts and dry fruit with maybe even a handful of gluten free pretzels and always some chocolate baking chips. I just ate couple pieces when I thought of it throughout the day. A little bit of cheese and a couple safe crackers, a piece of fruit or a small tin or individual serving snack pack are also good. You need to get some nutrition during the day so you can feel up to cooking a simple full meal for dinner. I hope your feeling better soon.
  12. Do you literally mean that is all you ate today or just that it was the only thing different? Meats can be a bit hard to digest and I think especially so if it was the only thing in your system for the day. You might want to go with easier to digest foods for a bit. Well cooked veggies, rice, potatoes, both sweet and white and fruits along with well cooked meats. The Advil should be fine gluten wise. The cramping could be trapped gas and if it is I don't know if Advil will help. If it doesn't you could try a gas relieving product or maybe peppermint tea.
  13. Sorry you are having to deal with so much pain. Have you tried some Pepto Bismal liquid? That may help so might be worth a try if there isn't any contraindications. Hopefully your doctor will be willing to order the celiac panel for you. When the results come back if they are a clear positive you may want to ask your doctor if he might give you the 'official' diagnosis if after a bit on the diet the levels go down and your symptoms are relieved. Most of the celiac pamel is pretty specific to celiac and high results wouldn't be caused by anything else. I mention this idea because of your high deductable issue. Such a shame that so many have insurance they pay for but still can't afford to use. Make sure your doctor knows you are in that group.
  14. It is best not to try and do this on your own. Talk to your allergist. Not all will deal with food intolerances but if yours doesn't find one who will. Mine had me fill out a very detailed diet questionaire and tested for true allergies before he gave me my starting point. I will admit I wasn't real happy with my starting point since none of my usual foods were on it. He said that I was most likely to react to foods I ate the most so most of the 5 I either rarely ate or didn't really like. The prescribed starting point he formulated was designed to make sure I had adaquate nutrition and enough calories. It took about 2 weeks before a lot of my tummy issues resolved and I was then able to start adding foods in one at a time for a week before moving on to the next. He said food intolerance reactions can take up to a week to show up so I had to be sure it was a full week between food additions. I did have to call three offices before I found a doctor who could do the formulation of the diet but this guy truely saved my life. Out of all the doctors I had seen, including specialists in big hospitals, he was the one responsible for finally realizing I was celiac. He of course referred me back to my clueless GI doctor who confirmed the diagnosis by almost killing me with a gluten challenge. I should note that some of my intolerance (not gluten of course) did resolve after I had healed. Even dairy which I hadn't been able to have for years! I hope you can get some answers and are able to heal soon.
  15. You could ask the allergist to give you a starting point for an elimination diet. You would start out with 5 or so foods and then add in one new food a week to see if you react. If you react you of course drop that food. It is a bit of a pain as everything has to be basically single ingredient to start. My allergist felt that was the best way to go and more accurate than blood testing.