ravenwoodglass

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ravenwoodglass last won the day on April 13

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About ravenwoodglass

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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 had a lot of hive incidences before I was diagnosed. I would get them from pressure. Even just running my fingernails lightly on my skin could cause them. I also was allergic to 98 of 99 things that they did skin prick testing for before diagnosis. After I was found to be celiac and had been gluten free for a short time the hives resolved completely. My allergist said that because of the undiagnosed celiac my immune system was in hyperdrive and once I got the diet under control much of my suffering would resolve. He was right. In reality out of all those positive reactions I only have real allergies to a couple plants, my cats and my dog. Even those aren't severe enough now to even feel I need an antihistamine. I can't promise your experience will be the same as mine but I hope the hives resolve for you soon.
  2. ravenwoodglass

    Test Results

    It is quite possible for damage to get missed with the biopsy. How many did the doctor take? He should have taken about 6. Also is the IGA test the only test he did out of the celiac panel? As far as I know a positive result in that test is specific to celiac. Did the doctor tell you to do a strict trial of the diet? If not he should have. Do read the Newbie 101 thread at the top of the Coping section and get yourself strictly gluten free. Some doctors will diagnose based on relief of symptoms on the diet and your antibodies going down. Ask any questions you need to about all you need to keep yourself safe as being gluten free involves more than just the foods you choose. I hope you are feeling better soon.
  3. If you had positive antibodies you have celiac. I hope they get you in for your scope soon. As soon as that is done go ahead and get gluten free. You don't need to wait for the results. As to the issue with typing I developed that also. However I had severe nervous system impact even as a child. I did recover greatly but my right hand still has some degree of lag time. I can walk unaided now and don't fall over anymore so I can deal with the 'slow hand'. Since this just began with you a short time ago there is every chance that once gluten free it will resolve. Have they chacked you levels of B12? If not it would be a good idea for them to do so. Even if they can't check soon you could try some sub-lingual B12 tablets. Just be sure to tell your doctor as you would need to stop them for a bit before the doctor checks the level. I hope this resolves for you soon. Welcome to the board and do ask any other questions you need as we have a lot of nice and knowledgeable folks here.
  4. ravenwoodglass

    To test or not

    Getting a diagnosis is important but you can't rely on the gene tests to tell you for sure since more celiac associated genes are there other than the two for which they test. I am an example of someone without one of the two most common genes. I am very thankful I was diagnosed before they started doing gene testing. If not I would be dead without a doubt. After I was diagnosed my children were tested and both were a low positive on testing. A few years later one child decided to get her genes tested and was told her diagnosis was a false positive (despite symptom relief on the diet). That prompted me to test my genes and it was discovered I am a double DQ9 which had at that time recently been recognized as a celiac associated gene. Long story short, don't take gene testing as a for sure way of telling you whether you are celiac or not. We still have a lot to learn about celiac and the genes associated with it. If you are gluten free and saw resolution of your problems at present the best way to a formal diagnosis is a challenge and blood testing and endo. If your reaction to the challenge brings all your symptoms back sometimes a doctor can prescribe a drug that will make the challenge tolerable or you can simply realize that your body is telling you what it needs and stay strictly gluten free.
  5. I think two serving of a gluten food a day is enough. So as long as the amount of the crackers is a couple servings it should be okay. You may want to consider having some gluten foods that you might really miss if you strongly suspect celiac.
  6. Do give the diet a good strict try. If you don't trust your family to keep you safe you will have to do most of your own food preparation. It is tough when you are living with gluten eaters but it can be done. If you haven't already do read the Newbie 101 thread at the top of the Coping section. It has a lot of good info. You may also want to look at threads that have advice on living safely with gluten eaters or ask any questions you may have about it. I do hope you get some relief soon.
  7. That should be no problem. I have eaten a sandwich a day and sometimes even have rice for dinner for 15 years now and no ill effects. If you are really concerned you could look for 'Grainless Baker' products. He might like their French bread for sub sandwiches. Their products are tapioca based and I like both the French bread and their bagels.
  8. Some celiacs do get C before the D sets in. I had years of C similiar to what you were going through. Even had impacted intestines once. That was no fun. It is clear you have an issue with gluten and with the level of sensitivity that you describe may well be celiac. Unfortunately you would need to do a lengthy gluten challenge for any celiac related testing if and when you want to do so. There are folks who are able to stick strictly to the diet without a formal diagnosis but some will want to 'cheat' without one. One negative about you not being diagnosed is that it may be harder to get your children tested. Celiac is genetic so your kids should be screened even if they don't seem to have symptoms. It would be a good idea for you to check out the Newbie 101 thread at the top of the Coping section if you haven't already. Welcome and ask any other questions you need to ask.
  9. It is wonderful of ou to want to try and make something special for your friend but I have to agree with CyclingLady. There is so much more to cooking safely for us than just the ingredients. You may want to read the Newbie 101 thread at the top of the Coping section. It has a lot of good info on what you would need to do to cook food safely for your friend.
  10. ravenwoodglass

    Do tabs help?

    Before diagnosis I needed to use either canes or walls to be able to walk comfortably. While my balance improved within 6 months it did take PT to improve my gait along with time. Before diagnosis an electromylogram for one leg had a flat line result showing that nerve impulses we not getting to my right leg. That took longer to heal than my balance.
  11. ravenwoodglass

    Do tabs help?

    Different folks take different amounts of time to heal. I was able to walk unaided within 6 months and went back to work within a year. It did take up to 5 years for most of my problems to resolve but I was sick for decades. Try to think as positively as you can and a physical and/or occupational therapist can be very helpful in speeding the healing and helping you learn coping strategies while you heal. For example I was encouraged to always make sure that my keys are put in the same place every time I come in the door. Before I was healed I would forget where I put them in seconds. Hard as it is try to stay as positive as you can. Healing is an insideous process that takes tiny steps but you can heal.
  12. ravenwoodglass

    Testing for Medicaid Patients

    I don't know the answer but I do know that my younger brother who clearly is celiac and quite advanced is on Medicaid. Even though I have seen on his med record that he has told his doctor that it is in his family he has never been tested. He goes often to the doctor ($) and is on many very expensive meds ($) for issues that would resolve if he was gluten free. Since his doctor doesn't think he needs to be tested he, of course, refuses to even think about trying the diet. The amount of money that could be saved by the government if they would just test the folks that have symptoms and give some support to low income folks that are diagnosed is IMHO astronomical. To say nothing of the suffering that would be relieved.
  13. ravenwoodglass

    Do tabs help?

    I am not familiar with Lerace. Supplements are not going to hurt. I found subligual B 12 to be helpful. Just be sure to tell your doctor what you are taking and stop them for a week or two before your doctor checks your nutrient levels.
  14. ravenwoodglass

    Do tabs help?

    The only treatment for gluten ataxia and other neuro impact is the diet. Followed very strictly. Recovery from neuro impact is slower than for gut impact but it can occur. How much healing takes place is hard to say. Some will recover quickly and completely and others will not get back to 100%. I think the folks, like myself, that have residual damage are folks that went undiagnosed for a long time. I do still have some premanent impact but it doesn't keep me from leading a full and productive life. If gluten ataxia is the cause of your problems hopefully you will recover fully but you do have to be patient as hard as that may be.
  15. After Udi's changed their bread I tryed Canyon Bakehouse. It makes great grilled cheese. I just take the slices out of the freezer a half hour or so and let them thaw in my toaster oven. I find their bread seperates easily and even take it untoasted in my daily PB&J for work. Their rye bread is fantastic in my opinion and I always try to keep some on hand. I find their bread also keeps well thawed my my bread box. I do make sure if there are any ice crystals that I brush them off before thawing if not keeping it thawed.