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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Yes if your blood test was positive and you got relief on the diet and then after that those numbers went down to normal levels you are one of us. Personally I wouldn't use gene testing as a for sure one way or the other that you are celiac. There is much that we don't know yet about genes and there are many more celiac associated genes than are usually...
  2. ravenwoodglass
    You said you felt bad for about 4 hrs then a bit better. I could be wrong but I think you would have had D even without the spicey meal. The spicey heat of the meal may have made things worse though. I hope you feel better soon. If your still having stomach pain some pepto bismal liquid may help a bit.
  3. ravenwoodglass
    Bring your grocery list when you go to Wegmans. I don't know if you are aware but they label their gluten free products with a circle G. It makes shopping quick and easy with no label reading. I have never been glutened by a product that they label gluten-free. Do be aware if they have two sizes of product and one has the label and one doesn't go for the...
  4. ravenwoodglass
    Yea everyone in my family was positive also...including my ex-husband. I think it is much more common than most doctors think because many of us think our tummy troubles are 'normal'. A lot of people self medicate with the wealth of 'tummy products' on the market and never get tested. My doctors told me for years I just had a 'nervous stomach' and taking...
  5. ravenwoodglass
    No your not alone. Welcome to the board. Ask any questions you need to and read as much as you can as the gluten-free lifestyle can be tricky at first. I hope you are feeling better soon.
  6. ravenwoodglass
    If a doctor says the celiac panel is 'inconclusive' to me that means a couple things. It might mean that only one of the tests is positive. Some doctors think they all need to be positive to be celiac, which is not the case. It could also mean the tests were a low positive. Did you see the actual test results? It would be a good idea IMHO to get tested again...
  7. ravenwoodglass
    If you live near a Wegmans their store sausage is gluten free and is quite good IMHO.
  8. ravenwoodglass
    If you had positive blood tests before you went gluten free and then got retested after healing and the tests were then lower or negative IMHO yes that would be 'proof' that you needed the diet since you also have had relief from symptoms.
  9. ravenwoodglass
    If you are done with celiac testing there is nothing to lose by doing the diet but the pain.
  10. ravenwoodglass
    Have you give the diet a good strict try yet?
  11. ravenwoodglass
    I like the Udi's also. I keep mine frozen until I need a loaf (my store runs out a lot so I always buy at least 2). I then let it thaw in the frig and usually toast it before I eat it but it seems to be okay for a sandwich even untoasted. Kinnickinnick is also good. That one I leave frozen and only pull out what I am using right then.
  12. ravenwoodglass
    Your blood work was positive and you have one of the 2 main genes that cause celiac and your symptoms and other diagnoses sound like many could be gluten related. False negatives on both blood and biopsies are common but positive tests are positive. The choice to do more testing is up to you. With positive blood work you need the diet no matter what the...
  13. ravenwoodglass
    Did you make sure the med is gluten free? Some pharmaceys will check for you but some of us go right to the maker. If you have the bottle somewhere, likely in real tiny letters is the name of the company that makes it. If you enter their name and the words contact information in a search engine you should be able to find a link that will tell you how to call...
  14. ravenwoodglass
    If you are still in that much pain after this amount of time and you feel your doctor is not addressing it perhaps a second opinion is in order. While doctors can be slow to recognize celiac they can also have a tendency to attribute everything that comes along after as being celiac related. If you don't trust this doctor it may be time to find another one...
  15. ravenwoodglass
    You haven't been diagnosed long and you are still healing. You both need to have a bit of patience with how long it can take to heal fully. Chances are you have been ill for quite a while and that is how he thinks of you and it may take time before he realizes that that you are not your disease. You should talk to him about holding off on any permanent...
  16. ravenwoodglass
    Pot does help some people with some of the symptoms of celiac. Since you are no longer symptomatic from injesting gluten you no longer need the med. Like with a lot of meds once the symptoms it is helping are no longer there dropping the med is no big deal. Glad you figured out what the problem is and are being strict with the diet and I hope you continue...
  17. ravenwoodglass
    I don't know for sure what causes the ataxia. I think it is the antibodies attack on the brain. I do know that with ataxia celiacs usually have brain lesions called UBOs or unidentified bright objects, that are visible on an MRI. They are similiar to the lesions seen in MS but they are not in the same location. Since I haven't had another MRI since I was...
  18. ravenwoodglass
    It is a misconception that all celiacs are rail thin. There are many of us who are overweight when diagnosed. Before you go gluten free it is a good idea to at least get a celiac panel done including a total IGA. Those tests do have a high false negative rate but a positive is a positive. You can go gluten free without testing, we don't require a doctors...
  19. ravenwoodglass
    Too bad your doctor didn't do a total IGA. If you are IGA deficient then those tests could well be a false negative. You do have a positive IGG which is what doctors would go by if you are lacking IGA. You do sound like you could be one of us. When you are done with testing do give the diet a good strict try and your doctor could rerun the IGG in 6 months...
  20. ravenwoodglass
    The good news is you are likely on the downside of your reaction and should be feeling better soon. The bad news is that to get any testing done eating one gluten item every two or three days isn't going to do it. You need to eat the equivalent of 3 to 4 slices of bread a day for up to 3 months if you have had time gluten free or gluten light. That said having...
  21. ravenwoodglass
    Has your doctor confirmed with stool samples that you had salmonella? I have had that and I was given antibiotics to take care of it. Did your doctor ever test you for celiac? He should have done that before he told you to go gluten free. I have never heard of a doctor 'prescribing' the diet as a rememdy for food poisoning so I wonder if he tested you and...
  22. ravenwoodglass
    3 hours after your first deliberate injestion and you already have bloating, stomach pain and a headache so you are reacting but it may take a day or two before the D hits. Did you get relief from your problems when you went gluten free? What reason is this doctor giving you for wanting you to do the challenge and then retest? Is it mostly his curiosity or...
  23. ravenwoodglass
    It is a good idea to be cautious with dairy until you have healed a bit as many of us are lactose intolerant until we heal. Hard cheeses like cheddar may be well tolerated though as they are pretty much lactose free. If you are avoiding dairy you may want to look into a hemp milk as it is pretty high in protein, calcium etc. Personally I only the like the...
  24. ravenwoodglass
    If you are newly diagnosed it isn't unusual to feel constantly hungry. Your body has been starved of nutrition for quite a while and is happy to be able to get food that doesn't attack it. Eat lots of naturally gluten free whole food and try to avoid processed as much as you can. Go for stuff that is high in nutrition and has lots of calories that you like...
  25. ravenwoodglass
    The longer we are away from gluten the more sensitive some of us become to CC. This applies to those of us that we label as gluten intolerant as well as those that test positive for celiac. If you were not eating much gluten when you were tested you may have had a false negative on the tests and at times even those who are celiac and still on gluten can have...
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