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ravenwoodglass

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About ravenwoodglass

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  • Birthday July 31

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    Female
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    Gardening, photograpy, painting and drawing, textile arts, glass art, reading
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    Upstate NY

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  1. In addition to cheese made with yogurt, hard cheeses like cheddar, romano, parmesaen etc are also going to be lactose free. Eggs are also a good source of protein if you eat them. Do bear in mind that celiac can really mess with your head. It can cause depression and anxiety that can get worse for a short time when you first go gluten free. your life is not over by any means. The reason why you see more people on boards and in forums that are having problems is because most when they heal go on with their lives. We don't hear from them with the exception of a few that stick around to help people that are still struggling. Hang in there it will get better.
  2. Welcome to the board. Celiac is not a death sentence by any means. I was undiagnosed from age 4 to age 46. Words can not describe the hell of the last 15 years before I was finally diagnosed. I am alive and healthier than I have ever been. There are others who also went years and are now doing well. There are some who had complications of cuorse but not everyone does. Thankfully it sounds like your doctors have found this relatively early. You should recover in time. Do be sure to read that Newbie thread and if you can get the others you live with to read it also. You can live safely in a mixed house but you to have to take precautions to be safe. As the others stated you do need to get back on gluten until all celiac related testing is done. You don't have to eat a lot but if your going to get biopsies done you do have to have some daily. Most of all try to relax. Having celiac does take some getting used to but you will be okay.
  3. First please keep her on gluten until all her celiac testing is finished. As to other intolerances it does depend on the person. In my own case I got dairy back after a few months gluten free but am still intolerant of soy protein or flour.
  4. You could try on the first couple of dates doing stuff that doesn't involve food. Or, perhaps bring a safe snack or a picnic with some gluten free stuff. If your date asks about it just tell them you have celiac. If you don't make a big deal out of it likely they won't either.
  5. The gluten reaction begins in the mouth. Gluten begins to be absorbed the minute it comes into contact with the lining of your mouth. This starts the antibody reaction. Even if a celiac were to spit out a piece of gluteny food and rinse their mouth right away chances are they would still react. (Been there done that very early on) I hope your little one is feeling better soon.
  6. Mark, Can you post the tests and results as they are written on the paper along with the labs ranges? Some doctors don't do a full panel or run a serum IGA to make sure the person is not IGA defiecent. I agree that you should drop dairy for a bit to see if it helps. You mention having had hard stools for most of your life and that what you are seeing is not D but much softer stools. Maybe your change in diet is simply your body 'normalizing' after years of C. Just a thought.
  7. The reason that symptoms take a bit to resolve is because the antiboies can take time to go down.
  8. In the US only two of the celiac associated genes are looked for and there is research showing that they are not the only ones. The gene I carry two copies of are an example of that. While not common DQ9 has also been shown to be associated but doctors do not usually look for it. While helpful , please do not rely solely on gene testing to rule celiac in or out. It is too bad your doctor didn't have you tested with the celiac panel before telling you to start the diet. You really need to get back on gluten and at least get the blood work done and then possibly the endoscopy.
  9. Gluten reactions can be delayed so it isn't always the last thing you ate or came into contact with that got you. So look over what you have eaten for the last couple days. It is not a good idea for any of us to work with gluten flours. Flour can become airborne and be inhaled and get into the system that way. For the pumpkin seeds call the maker and ask if they use gluten flours on items that are run on the same line. Also check with other family members and see if maybe someone 'forgot' and used your butter, nut butter etc. I hope you feel better soon. The severity of your reaction is your bodies way of trying to protect you. Liquid Pepto Bismal may help with stomach pain and if you have D Immodium may be useful if you need to leave the house. If you don't have to use it I wouldn't as you want your system to clear itself as quickly as it can.
  10. Positive blood trumps negative biopsy. There is no other cause of elevated Celiac panel results. Can you get a copy of the biopsy reports? Some doctors will not call a biopsy positive until the villi are completely destroyed and discount any changes that come before that. Some will even tell a person to go back on glutenand come back in a year or so to retest to see if the villi are completely destroyed yet. IMHO you should keep her strictly gluten free and let her heal. Being gluten free is not going to interfere with testing for other problems. Then when she has recovered have the celiac panel run again to see if those numbers have gone back to a negative range. Good luck and I hope she is feeling better soon.
  11. I'll keep my fingers crossed for you that the reaction isn't too strong. Do keep your doctor in the loop with the challenge if symptoms get too severe. A couple things that may allow you to still work outside your home that helped me are taking an anti-inflammatory like Aleve, Advil, Asprin etc (ask your doc which might be okay for you) and Immodium. I use the caplets and still will take a half of one if I am going out for the day and know I will have to eat outside of the house. Good luck and hopefully you will get to the bottom of your issues soon.
  12. A good excuse to get your favorite treat on the way home. Glad you resisted the temptation.
  13. Try dropping anything with even gluten-free Oats. Some us us don't tolerate them and have a gluten reaction when we consume even oats that are certified gluten-free. Also look into the possibility that reactions could be related to arts and crafts projects at school. At that age my kids were doing stuff like paper mache projects in school.
  14. Welcome to the board. With numbers that high and positive in all tests there really is no doubt you have celiac. Do read the Newbie thread at the top of the coping section as it will have lots of good info for you. I hope you heal quickly but do know that with nervous system impact (your MS type symptoms) healing can take some time..
  15. There are different antibodies. If your doctor told you that your antibodies were a high positive with the celiac panel you have celiac.