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ravenwoodglass

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by ravenwoodglass

  1. ravenwoodglass
    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...
  2. ravenwoodglass
    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...
  3. ravenwoodglass
    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...
  4. ravenwoodglass
    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.
  5. ravenwoodglass
    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...
  6. ravenwoodglass
    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.
  7. ravenwoodglass
    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...
  8. ravenwoodglass
    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...
  9. ravenwoodglass
    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.
  10. ravenwoodglass
    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...
  11. ravenwoodglass
    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...
  12. ravenwoodglass
    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.
  13. ravenwoodglass
    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...
  14. ravenwoodglass
    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...
  15. ravenwoodglass
    Please do not go gluten free until after you have had all celiac related tests. If you have a endoscopy be aware that if your symptoms are primarily neuro that the endo may come back negative. That doesn't mean you are not celiac. Have you had blood tests or an MRI yet? With neuro symptoms you may have what are called UBOs (unidentified bright objects) on...
  16. ravenwoodglass
    Yes you should get the full panel done. Maybe ask for a referral to a GI doctor since this has been going on for over 2 weeks. It might also be a good idea to get a stool sample tested for food borne illness if they haven't done it already. I had salmonella for over 2 weeks once before the doctor tested. Doc kept insisting it was just IBS. Got an apology...
  17. ravenwoodglass
    Hi Andi. So sorry you are suffering so much. I have a twisted intestine also. In my case it isn't real painful at this point it just feels like I have a towel running down my left side inside. An internal ultrasound showed my intestines are displaced. I have had adhesion surgery and that did give me some relief for a few years but as often happens they grew...
  18. ravenwoodglass
    There are no blood tests for gluten intolerance only ones for celiac. If you doctor did blood testing and the results were positive why do they think you are inolerant rather than celiac? If this was decided because only one or two tests in the panel came back positive be aware that only one test needs to be positive to be a positive diagnosis for celiac...
  19. ravenwoodglass
    Call your insurance company. They should be able to send you a list of doctors they work with and may even know who is accepting new patients. Meanwhile get copies of all your tests and results. Good luck and hope you are feeling better soon.
  20. ravenwoodglass
    Welcome to the board. Healing can be a slow process and hopefully that is all that is going on. Do be sure to read the 'Newbie 101' thread at the top of the Coping page. It has a lot of good info to make sure you are doing all you can to keep her safe. Are you giving her gluten free oats? If you are using products with them stop for now. Wait until she is...
  21. ravenwoodglass
    Maybe you could clean them well and make some batches of grainfree dog treats and test those. Might make a good side line and once those test negative you would know the ovens are safe for us.
  22. ravenwoodglass
    I always wondered what a convection oven did that was different. (I wasn't made for all these newfangled gadgets LOL) Wasn't aware they had a fan. I would pass on that also unless there was a way to break it down real good to clean before running a high heat cycle.
  23. ravenwoodglass
    You and your mother should get celiac testing done. Any doctor can order a Celiac panel and if positive would refer you to a GI doctor for an endoscopy. Don't stop eating gluten until all celiac related testing is done. After all testing is done you should both go on the diet strictly no matter what the results. Some folks don't show up positive on testing...
  24. ravenwoodglass
    I am very sensitive and I wouldn't hesitate to use them in my own home. Since you are going to use pans in the oven I wouldn't worry about running them for a couple hours before use. I would just clean them real well. If you were planning on cooking pizza directly on the conveyer then I would get a new belt but since you are not that wouldn't be a concern...
  25. ravenwoodglass
    Welcome to the board. You poor thing! I have had DH breakouts in that area but never that bad. You must be in agony. Have you had a derm do a biopsy for DH? That would be a good idea if you can get in while the rash is active. Your doctor might be able to help you get in quickly and do bring the records with results for all that you have already been tested...
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