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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    I hope if you are still looking for a doctor derived diagnosis that you are still doing a gluten challenge. If the challenge is making you very ill then IMHO you have your answer.
  2. ravenwoodglass
    I am glad this went well. I was also told I had irritation in the esophagus and stomach. Personally I feel this was a reaction from the prep as I had no stomach pain previous, none after and only had pain while drinking that nasty stuff. My doc gave me a bunch of different acid blockers to try but I used Pepto the next day for the left over discomfort and...
  3. ravenwoodglass
    No there is no benefit IMHO to keeping 'a little' gluten in your diet. If you do the antibodies will never stop attacking you. The reason your body is reacting more strongly to gluten is because it is trying to protect. When you get bits of gluten or CC it starts a 'flare up' of the antibodies which makes us miserable. As hard as it is especially at first...
  4. ravenwoodglass
    I somehow missed this in my first reply. If you are in the US please be aware that the tax break we get is not that great. We can only take a tax deduction after our medical expenses reach a certain percentage of our income. The year before my diagnosis that would have helped as we had 17 thousand dollars in copays for testing, specialists and drugs that...
  5. ravenwoodglass
    If your total IGA is low eating all the gluten in the world won't give you a positive blood test. You have the gold standard for diagnosis, the villi damage and you feel better gluten free. IMHO your body has given you the answer. I do understand your desire for a firm diagnosis, it is too bad you have to literally (if you are celiac) poison yourself for...
  6. ravenwoodglass
    Many products are formulated to leave a residue on the skin or hair. With lotions this is to keep moisture in and in shampoos and conditioners it is to make the hair smoother. Anything that you get on your hands has the chance of being injested, granted in small amounts. However even very small amounts are enough to get us. Otherwise we could eat that salad...
  7. ravenwoodglass
    Thanks so much. Somehow I never saw that. I guess I scroll down to fast.
  8. ravenwoodglass
    I have gotten a couple of messages and can't figure out how I get to my mailbox anymore to answer them. Any insight as to what I am missing?
  9. ravenwoodglass
    I would agree that the doctor needs to be kept in the loop as far as the diet changes go but you really don't need a doctors supervision to try it and see if it helps. If it does help you may need to modify meds that you are on and that should be done in close contact with your doctor but IMHO you don't need a doctors permission to try the diet.
  10. ravenwoodglass
    With symptoms it is highly unlikely IMHO that it was a false positive. Those are really almost unheard of. False negatives in blood and biopsy however are common. Do the diet. Chances are really good you will feel a lot better soon if you do.
  11. ravenwoodglass
    False negatives according to the NIH run at about 20%. I am one of those 20%. It was very difficult for me to get diagnosed because doctors would look at negative blood results as absolute proof that I wasn't celiac. I was and their assumption almost killed me. You could ask your GI to do an endoscopic exam to look for celiac, although those also have a...
  12. ravenwoodglass
    Since you have finished your testing you don't have to wait for the endo results to give the diet a shot. False negatives are unfortunately not uncommon in both blood and endo. It is a good idea no matter what the test results to do a trial of the gluten-free diet for a couple of months.
  13. ravenwoodglass
    Welcome to the board. Coming from someone who had an undiagnosed celiac in the military I can tell you that you would never make it through basic. They simply can't feed you safely. I am sorry that your plans didn't work out but there are plenty of folks that could use your services outside of the military. It will work out in the end. Since you were planning...
  14. ravenwoodglass
    I can only answer for myself but CC from cosmetics and shampoos etc give me the same symptoms as if I had gotten CC from food. If you are still having issues and are using toiletries with gluten ingredients try changing to some gluten free products and see if the issues go away.
  15. ravenwoodglass
    There are lots of folks that do tolerate distilled gluten but some do not. I am one who doesn't. I couldn't drink it. If you really wanted to know whether you could handle it you could drink some daily for a week and watch for a reaction. I wouldn't do this unless you are really well healed though.
  16. ravenwoodglass
    She does sound like she is mentally ill. Perhaps consider contacting your local social or elder services and see if there is any way to help. She may need medication and it doesn't sound like she can really take care of herself so they may be able to lead your husband and his Dad to a way to help her. Your father in law must be in a living hell or he has...
  17. ravenwoodglass
    This is going to sound extreme but I would be looking to move as far away from this woman as is possible. She is rude and it sounds like if she has her way her 'baby boy' will be single again and forever. Your hubby sounds like a wonderful person but he needs to stand up to her. He should be coming to your defense. Where was he when she was going into her...
  18. ravenwoodglass
    Your child sounds much wiser than her doctor. She could be having neuro impact from the celiac that is kind of short circuiting her sense that she has to go. I had that issue also but it has gotten much better gluten free. I am glad you are planning stool testing for her and since she doesn't have to be actively eating gluten for that, as long as you are...
  19. ravenwoodglass
    What was she eating most before diagnosis? If you tell us what she ate before we might be able to suggest things she would be more willing to try. Sometimes if you let a child 'help' with the food prep it can make them more likely to eat what is served. She is of course to little to cook but she could help put veggies in a cold pan and add the water from...
  20. ravenwoodglass
    Do you have access to a dermatologist? The itchy bumps could be DH and a diagnosis of DH is a diagnosis of celiac. It isn't the gluten coming out through the skin, your doctor was correct about that. It is an antibody reaction in the skin. A dermatologist can do a biopsy of the sking next to the lesions to find it.
  21. ravenwoodglass
    Yes that can be seen with a gluten reaction.
  22. ravenwoodglass
    I tried to answer your poll but since the only thing I checked was the part about reduced cost it wouldn't let me. For myself I have learned more here than I did with a nutritionist or anyone else. The cost can seem to be high but in the long run with buying less processed foods my grocery bills have actually gone down a bit.
  23. ravenwoodglass
    For me the symptoms did thankfully totally resolve on the diet. And they resolved pretty quickly. I should note that any antidepressant meds or meds for bipolar made me much worse, because I wasn't really bipolar I was celiac. I am very thankful that the diet took care of those issues. It does make me wonder how often some of us are diagnosed with a mental...
  24. ravenwoodglass
    Your correct the label regs for foods and cosmetics differ as do the regs for labeling drugs. Neither food nor drugs need to declare if an ingredient is derived from a gluten ingredient, even wheat. Many companies get ingredients or even the actual product made overseas and being cautious is, in my opinion, a good way to go.
  25. ravenwoodglass
    If they are not labeled gluten free I would stay away from them. They may be made in a different plant than the larger ones or they may contain gluten ingredients in the flavoring. To be on the safe side if a company has the gluten free label on some items but not others I avoid the ones without it. There is a reason why they don't carry the gluten-free...
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