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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. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. The procedure is a breeze. You will go in, be sedated and go to sleep for a short nap and then it's over. Some people will have a bit of a sore throat but not everyone does. For me the hardest part of the endo was not being able to drink coffee when I got up. You seem to have been back on gluten for long enough to have the test but as CLady said there is a good chance your blood work may be negative. In your case you may want to continue eating gluten after the biopsy at least until you get your blood results. If they are negative consider going a bit longer and getting them redone.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. The reason that symptoms take a bit to resolve is because the antiboies can take time to go down.
  14. 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.
  15. 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.