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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    I think your plan to go gluten free for both of you is a good one. He had issues and a positive blood test, you saw great improvement on the diet and when you put him back on gluten his problems returned to such an extent that even a 5 year old was able to see the difference. I would do as you plan to do, get him back off gluten and give your family back...
  2. ravenwoodglass
    I am glad you are seeing some improvement on the diet. As you know it can take some time to heal. It can be hard at first getting to know the ins and outs of the diet and all that goes with it. Deleting daity for now is a good idea you can always add it back in later when you are feeling better. You also might want to consider restricting soy and then...
  3. ravenwoodglass
    You do need to avoid the deli. As stated the risk of CC is very high. Even if the slicer is wiped down between uses it still has captured 'debis' inside the blade guards etc. I used to work in a deli and one of my jobs at closing was cleaning the slicer. Frankly it was disgusting. There are a lot of prepackaged lunch meats available so it just isn't...
  4. ravenwoodglass
    Fantastic!!!!!! She may be noticing the improvement in your health and well being, sometimes that is what really makes a believer out of famly members. I hope she is feeling like a new person soon.
  5. ravenwoodglass
    It would be hard for someone to tell you what it is. It could be swollen lymph glands which is something that I had problems with prediagnosis and they took a very long time to go down. That they get smaller and then larger with a glutening in my none medical professional opinion would rule out something dire like cancer. If you are a woman have you...
  6. ravenwoodglass
    These look like a good vitamin but one word of caution, they do contain soy and some of us cannot tolerate soy. If it seems like you are not tolerating them that might be the reason. Another good brand of vitamins that is fairly reasonable in cost is Country Life. Also if you have a Wegmans close by they carry allergen free vitamins that are fairly reasonable...
  7. ravenwoodglass
    You do sound like one of us. You would need to go back to eating gluten for from 6 weeks to 3 months for testing for celiac or gluten intolerance. An allergist can do skin prick testing for a true allergy but an allergy would not cause nervous system involvement that you have. With the ataxia, have they done an MRI on you? With gluten ataxia many times...
  8. ravenwoodglass
    Your welcome. I had such a long road to diagnosis and so much damage. Trying to help others not have to go through the same thing makes it seem those years of pain had a purpose. I hope the B12 helps you and if the incontinence continues even after your bowels are more regular do not be afraid to ask for a referral to a physical therapist that specializes...
  9. ravenwoodglass
    If you can see a dermatologist and get the rash biopsied looking specifically for DH which is the skin form of celiac. They will biopsy the area next to the rash not the rash itself. It is possible to have both celiac and an allergy to wheat or just one or the other. Have you seen an allergist?
  10. ravenwoodglass
    Your story is all to familiar to many of us. Unfortunately you can not be tested for celiac without going back on gluten. One thing you could do is Enterolab testing, they cannot diagnose celiac but they can tell you if you are forming antibodies to gluten if you haven't been gluten free for a really long time. Also you do not need a doctors permission...
  11. ravenwoodglass
    When is your marathon? You need to be over the glutening, I would think, before you run it. I would just do what you can with training and don't be to hard on yourself if you can not do as much as you would like. Your challenge sounds positive so I am glad to hear you are going back to gluten free as soon as the endo is done. Usually a challenge is at...
  12. ravenwoodglass
    I am so sorry to hear about your loss. Yes celiac can get worse after a traumatic event or a physical illness or stressor. For many women celiac is triggered by childbirth, for example. If you can get your grandmother to be at least tested for celiac that would be a really good thing to do. And yes celiac is associated with both thyroid and gallbladder...
  13. ravenwoodglass
    Even if it isn't really popular at first if you do open one an internet site would help increase your sales. One thing you could do is check and see if any of your local health food stores or grocery stores would be interested in carrying your products. You could also consider making some gluten free take and bake items, things like pizzas, soups, casseroles...
  14. ravenwoodglass
    Happy Birthday! Hope the day is filled with fun and relaxation.
  15. ravenwoodglass
    It might be helpful for you to keep a food diary for a while. Note not just what you are eating but also when symptoms appear. It is not uncommon for us to have other intolerances, soy is a big one it seems. Also if the issue is an intolerance the symptoms may take 3 or 4 days to appear so the diary can be helpful in pinpointing a pattern.
  16. ravenwoodglass
    You might also consider avoiding dairy for a bit at the same time, or at least limiting it. It may help you to heal a bit faster. I got a great deal of relief from the tingling and some other neuro symptoms pretty quickly with the B12 an the diet. Unfortunately my neuro damage started in childhood when I developed ataxia and that is still a bit of a problem...
  17. ravenwoodglass
    I am glad to hear that they are taking your health issues a bit more seriously. Do you know what the blood test results were? I had not answered previously but when this medication is prescribed for a genuine need for it it can be a big difference. It is not however something that should be given without a doctor being absolutely certain that it is needed...
  18. ravenwoodglass
    I would give the diet a couple of months before looking for other things, give it a chance to heal you first. I am someone who has become a hermit. I am not antisocial but the fear of a reaction (mine are very severe) combined with residual damage and PTSD from other life experiences has made me agoraphobic. I gave in to it for 7 years but finally realized...
  19. ravenwoodglass
    Don't get discouraged it does take a while both to get the hang of the diet and for antibody levels to decrease. Do check everything that Momma Goose mentioned and also be aware that for many of us products produced in the same place a gluten items can be crosscontaminated. In addition you need to check to make sure any product with 'natural flavors' is...
  20. ravenwoodglass
    I react strongly to soy protein, it doesn't give me the same symptoms as gluten but the reaction is still bad enough for me to avoid it. Soy lecithin I am fine with, thank goodness since it is in so much.
  21. ravenwoodglass
    The best thing you can do is to call the companies and ask. I know in the US that Snickers are safe as well as starburst but that does not mean they are where you are. One benefit to calling companies is they will sometimes send you coupons for the items you are questioning. Many companies put a phone number on their products or list a website where you...
  22. ravenwoodglass
    For me Pepto Bismal liquid has been very helpful when I get glutened and the stomach pain returns. Have you given up dairy? Limiting or giving up dairy when first going gluten free can help you heal a bit faster. When you are feeling good again then add it back in and see if you react.
  23. ravenwoodglass
    I don't have any definative answers for you but you are doing the right thing by keeping him on gluten until the tests are finished. The day they finish the tests put him on the diet. Testing in young children is less reliable than in adults and even with adults false negatives are all too common. I lost many years because doctors relied on blood tests...
  24. ravenwoodglass
    You have a good GP who seems to up on all the systems that gluten can impact. After you are done with all the testing you choose to do give the diet a good strict try. Since your going for a colonoscopy having the endo done at the same time is a good thing to do. Try to get the test scheduled for as soon as you can and keep eating gluten until it is done...
  25. ravenwoodglass
    Your gluten free trial and the result of the challenge are the best diagnostic there is IMHO. I just wish I had known to try it before my brain and body got so damaged but I never showed up in blood work so no doctor ever really told me what the tests were for, just that they were negative. If you are going to continue persueing a doctors diagnosis you...
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