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Everything posted by ravenwoodglass

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. ravenwoodglass

    Cerebellar atrophy

    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 the MRI. some neuros are not aware that these are diagnostic of the antibodies attacking the brain. If you do have celiac you can heal. It will take time though. It took 6 months till I could walk unaided for example. I still needed a lot of physical therapy before I regained my balance and walk without an abnormal gait. Do make sure your doctor has tested your B12 levels, they should be over 500. Supplementing with sublingual B12 may be helpful even before diagnosis but will not interfer with celiac testing. You might get some degree of relief from it but not a sure thing. I hope that what you have going on is celiac as that can be treated by a 'not so' simple diet change. Do read the Newbie 101 thread at the top of the Coping section while you wait to finish testing. It is a good idea to trial the diet after testing, strictly, even if tests are negative. some folks show a false negative on testing so a strict trial is advised after testing is finished.
  13. 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 and some antibiotics.
  14. 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 back. I would go back to the surgeon. Maybe bring your husband with you as many doctors will discount how much discomfort a woman is experiencing. If this is interferring with your life then perhaps the laproscopy would not be a bad idea. There are risks with any surgery and you will want to consider them carefully. Perhaps there might be another test like a CT or MRI that they could do to figure out better what the issue is. I hope some others come on with some ideas for you. I hope you get some relief soon.
  15. ravenwoodglass

    Vagus Nerve Attack

    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. You very well may actually be celiac.
  16. 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.
  17. I had an endo a couple of weeks ago. After 5 years gluten-free there was no evidence of celiac so I guess I have healed nicely. However the biopsy report stated that they found Focal Gastric Metaplasia in the specimens. My doctor thinks they messed up at the lab and made a mistake and is comfortable waiting a year or so and then redoing the biopsy. He said visually everything looked fine. To my understanding the finding suggest either cancer or a precancerous condition but I don't want to jump to conclusions. Would you want a second opinion? Do you think they can reuse the same slides or do I have to go through everything again. It was a horrible experience as the doc was in a hurry and started everything before the meds had a chance to take effect. Not something I want to repeat in a hurry unless needed.
  18. 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 symptom free before reintroducing them. Some celiacs react to oats the same as they do to gluten. It is also a good idea to hold off on foods with soy as that is another item we can have issues with for a while. I hope she recovers soon but it can take some time. Make sure the rest of the family gets tested for celiac as well. It is not uncommon for other family members to need the diet even if they don't seem to have obvious symptoms.
  19. ravenwoodglass

    Used Oven and my Bakery

    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.
  20. ravenwoodglass

    Used Oven and my Bakery

    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.
  21. 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 but can still have a serious problem with gluten.
  22. ravenwoodglass

    Used Oven and my Bakery

    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. Good luck at the auction.
  23. ravenwoodglass

    Please Help DH rash on genitals?

    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. I don't know if the steroid creams will produce a false negative for a biopsy. You should also get a full celiac panel redone. Just because one came back negative before doesn't mean it will always be negative. Folks with mostly DH and neuro symptoms are also more likely to have a false negative. After all celiac related testing is done do go back to the gluten free diet as it sounds like you need it.
  24. Please wait to go gluten free as if you go gluten free now the doctor won't be able to test you for celiac. If your son is 'allergic' to wheat, rye and barley it sounds like he may be celiac. Your being diagnosed could help him as well as yourself.
  25. Welcome to the board. First off set your mind at ease. Your slip up did not do you any permanent damage. Any illness or bad stressor can affect our periods. If there is any possibility you may be pregnant do get tested if it doesn't start soon. It can take some time for our bodies to heal from a good glutening. If you ate tht whole bun you got a big dose. However if things get worse or don't improve soon do make an appointment with your GP to be certain nothing else is going on like food poisoning etc. I hope you are feeling better soon.