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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    There are different levels of sensitivity amoung us. I am one of those that cannot consume distilled gluten, it has the same effect on me a piece of bread would. I am zero tolerance, some are lucky and can get away with eating stuff I can't. I wouldn't touch McDonalds fries, I got sick from them too many times early on. IMHO it is best to avoid these when...
  2. ravenwoodglass
    If you were feeling better gluten free please don't let a negative blood test convince you to drop the diet. The blood tests may very well be a false negative. If you feel better on the diet go back to it. Also when a gluten challenge is done it is often advise to add it back in for 2 to 3 months. 3 weeks is often not long enough for the antibodies to build...
  3. ravenwoodglass
    Thanks for posting. Infections in that area can be serious as your doctor said because of the closeness to the brain. Infected teeth are dangerous for the same reason. The antibiotic shot should take care of the infection quickly. You were wise to have your doctor check it out.
  4. ravenwoodglass
    The fact you felt a bit better on the hypoallergenic fomula strongly points to your being sensitive to something more than gluten and dairy. My first thought is how much soy do you consume? I would drop that first and see if it helps.
  5. ravenwoodglass
    "Have I totally screwed up beyond redemption? " No you haven't. Do drop the oats for now though, some of us react to even the gluten free ones. You can try them after you have healed and see if you tolerate them. For now go with as much whole unprocessed foods as you can. I would go easy on the gluten free replacements for now. Concentrate on fresh whole...
  6. ravenwoodglass
    Your sons results show he is IGA deficient thus making the celiac screen basically worthless. He could very well be a false negative even with a normal total IGA. I think you are wise to consult with a ped GI. As to the gene tests since most doctors only test for 2 of 9 celiac related genes in the US those tests IMHO are less than worthless. I am a bit...
  7. ravenwoodglass
    I would contact the folks in your group that are bringing food. Thank them for wanting to bring in gluten free food for you and tell them if they have already gotten some stuff to please go ahead and bring the items that were premade in their packages. Explain that it turns out you also have other allergies and that is the reason you need to see the ingredients...
  8. ravenwoodglass
    I disagree with your doctor. If you have celiac you need to avoid wheat, rye, barley and oats to stop the autoimmune reaction. You also may have more symptoms than you think you do. Celiac is not a GI disease it is an autoimmune disease. Some of us don't even have GI symptoms but that doesn't mean that damage isn't being done. Celiac antibodies can attack...
  9. ravenwoodglass
    Do the vitamins have wheat or barley grass? Some vitamins are labeled gluten free but still contain those. They should be avoided. You do need to stay on gluten until you are done with testing. Then do give the diet a good shot. If you don't intend to have an endo since you have had the blood tests you could start anytime. If you do plan on the endo keep...
  10. ravenwoodglass
    Yes gluten sure can cause all kinds of neurological issues including the ones you have mentioned. I am very glad to hear that he is doing so much better on the diet. Hopefully the effects of his glutening will resolve soon. Talk to him and explain that is what it is and that it is a limited effect and will go away. Perhaps that will help him to feel better...
  11. ravenwoodglass
    It is not that gluten is being absorbed by the intestinal tract through the vagina. The issue is that when gluten comes into contact with mucous membranes the antibody reaction can be triggered. It might not make those that have GI issues sick to their stomach but it might flare other antibody derived reactions like in the brain, etc for those of us who got...
  12. ravenwoodglass
    You do sound like you could be one of us. Make sure to try the diet after you are done with testing even if it comes back negative. As to your question do have hubby brush his teeth throughly before you 'do anything' once you have gone gluten free. Also make sure all your lotions etc are gluten-free and if you use any type of panty liner get the unscented...
  13. ravenwoodglass
    I went through the same thing as far as negative blood work goes. Over and over again told I didn't have it even though I was so obviously celiac but since the blood tests were negative no one thought to do a scope and look. Hence my constant repeating to try the diet after all testing is done. I am glad you finally got answers and am sorry you to had to...
  14. ravenwoodglass
    Your doctor is wrong. The antibody tests are often used after we have gone gluten free to see if gluten is sneaking in somewhere. The antibody levels will drop the longer you are gluten free and for some of us they can drop pretty quickly. That's why we have to be eating gluten when we are tested. You do appear to have gluten sneaking in. Have you checked...
  15. ravenwoodglass
    I could be wrong but I think the IGA tells if we have celiac and the TTg tells us if we have autoimmune destruction going on from it yet. Like I said I am not positive on that perhaps someone else can explain it better and more throughly.
  16. ravenwoodglass
    False negatives are not uncommon. Doctors thinking the blood tests were always right cost me many years. After all testing is done do give the diet a good strict try for a couple of months and see if it helps.
  17. ravenwoodglass
    NO NO NO Therapy will help you learn to cope with what you are having to deal with. This concerns me greatly- "Every single day I think of something positive to prevent me from doing myself in and thats the only thing keeping me alive now" You need to stop making excuses and find the strength to ask for help. As to thinking you would never heal,...
  18. ravenwoodglass
    Things are going a bit better. I do have her in my room now by herself at night. Oh joy. She wakes me up at around 2 to potty and then croaks her desire to come back in a couple minutes later. I don't mind. She does like to drape herself on top of my head unfortunately. Fortunately she is not my 26 lb kitty. Thank goodness it is getting warmer and the door...
  19. ravenwoodglass
    Thanks for posting this. Of vital importance to me was this part: "Some fermented or distilled products such as vinegar may be derived from wheat. We suggest that you speak to your physician to determine if you need to avoid distilled products derived from wheat, rye, barley, or oats, as there are differing opinions between experts." I now know to watch...
  20. ravenwoodglass
    Most should be safe but if they have a lubicant that has Vit E in it that might be a problem. Gluten can be absorbed through mucous membranes, as is seen through the use a rectal challenge in some countries rather than a lengthy oral food challenge for diagnosis. If you have been using one brand and have had no issues like itching or irritation or mystery...
  21. ravenwoodglass
    Sure can. Being glutened from the food does that to me to.
  22. ravenwoodglass
    Your body itself is also a pretty good diagnostician. If gluten challenge makes you very ill IMHO you have your answer.
  23. ravenwoodglass
    There are some other genes associated with celiac than just the DQ2 or DQ8. I am firmly diagnosed and have a rarer (in the US) celiac associated gene, DQ9. It is quite possible to be celiac and not have either of the two most common genes. You could try testing at someplace like Enterolab as they do test for the other related genes if you are interested...
  24. ravenwoodglass
    Were they looking for celiac when they did the endo? If they weren't and they didn't take the biopsies needed then they wouldn't always find it. Even when they are looking for it in and endo it can still be missed but damage is not always visible just looking through the scope. Have you had a complete celiac panel done? If not then do ask your doctor for...
  25. ravenwoodglass
    One thing you are going to want to do is add a sublingual B12 to your vitamins. Our bodies can stop being able to utilize this vitamin but the blood levels will still look fine for a long time. The sublingual B12 should help those tingles disappear and will also help any nerve damage you have to repair more quickly.
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