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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    There is another possibility with the continued pain. I have had something called Reflex Sympathic Dystrophy set in after leg surgery. It caused intense burning pain. You may want to find out if that may be a possiblity also.
  2. ravenwoodglass
    I haven't had Trix in a while, well not in the last 7 years anyway. Were oats listed on the box, they are another concern as some will react even to the certified gluten free variety. Another strong suspect would be the coffe you had. In addition if the it is wise to avoid products 'products produced in the same facility as gluten' the chances of CC are...
  3. ravenwoodglass
    I think this is a good idea. If the first one you see doen't now seem a good fit don't give up just ask for a referral to different one. I have PTSD to the point where I am virtually agoraphbic. While celiac did excaberate the issues they do stem from other issues as well. I am early into treatment, my experience with doctors has left me very distrusting...
  4. ravenwoodglass
    Please let us know how you fare on the test. One word of caution, if they are using a bariun solution for this test make sure it is gluten free. The gluten free form is a thin liquid not thick and will have the consistancey of water.
  5. ravenwoodglass
    Some of us will react to gluten grain distilled vinegars. That may be why folks are having a reaction.
  6. ravenwoodglass
    Sometimes our bodies can really tell us the answer. If you are comfortable with being self diagnosed then just keep going. If you want a doctors diagnosis you MUST continue on gluten until all testing is done. The tingling may be from failure of your body to be able to utilize the B12 from food or supplements that you swallow. You may want to try taking...
  7. ravenwoodglass
    Hi Emily Just wanted to let you know if you want to message someone put your cursor just to the right of that persons name. You will see a little arrowheady looking thing, click on that and a pull down menu will appear and you will see the words 'send message'. If you click on that you will be able to send them a private message. I do need to note that...
  8. ravenwoodglass
    My thoughts exactly.
  9. ravenwoodglass
    You really need to see a doctor, I know you don't want to hear that but that is what needs to be done. Check and see if you qualify for medicaid, you won't know unless you check. You could also look for a clinic in your area that has a sliding fee scale. Another option is to head to the ER when you are having a severe attack. The extreme weight loss and...
  10. ravenwoodglass
    Do try and get him to come here and get some more knowledge about the effects of this disease. You should not have been berated for being ill and dealing with a child who was also sick. Your child and your health are more important than doing the dishes and picking up the house. You are not supermom and your child needed you and you were there for her...
  11. ravenwoodglass
    The light sensitivity and night blindness could be a result of your not absorbing nutrients from your food. The night blindness can also be related to aging. Make sure you are getting enough vitamin A in your diet or in supplements. For me the light sensitivity has improved a bit but I am still effected by night blindness enough to have trouble driving...
  12. ravenwoodglass
    Many consider it gluten free, HOWEVER many of us will react to it. If you are newly diagnosed you should avoid it until you are healed and then challenge it if you want. Challenge means you consume the product in question daily while not consuming any other questionable items at least 3 times a day for a week. If you haven't reacted by the end of that...
  13. ravenwoodglass
    Sometimes a bit of anger can be quite theraputic. I am glad you were able to get through it, boy have I and a lot of others gone through it. I got so tired of over 15 years of progressive symptoms blown off and the fact that even though at every appointment I would say 'Oh yea I also still have painful explosive D' blown off and ignored and no one had a...
  14. ravenwoodglass
    PA would not be 'fatal' if the levels are brought up to normal which is easy to do once the subnormal levels are found. Try not to worry even if it is PA and not celiac related (and it is likely related to your celiac) it is treatable through the shots or sublingual tablets. It would only be fatal if it was undiagnosed for a very, very long time. If your...
  15. ravenwoodglass
    Hormel labels their gluten free items, all the lunch meats in the brown package are gluten-free and their pepperoni is also. Fresh meats with no added broths (most common in chicken and turkey) are safe. If you live in an area that has a Wegmans although they haven't yet labeled their products like the store made sausages gluten free the butchers have...
  16. ravenwoodglass
    I am so sorry that you are going through so much and I and many others fully understand your fears. As already stated celiac requires a trigger and your surgeries and other problems could very well have triggered it. I would call the GI doctor and make sure they do an endo at the same time they do the colonoscopy. A colonoscopy will not diagnose celiac...
  17. ravenwoodglass
    This is an excellent point. When I was diagnosed with diabetes and we determined that meds were not an option. I got a book on the glycemic indexes of foods. It was very helpful with eating so that my BS stayed more stable.
  18. ravenwoodglass
    Good point. In addition GERD and heartburn symptoms can also be part of the GI presentation of celiac. If they are related to celiac they will resolve on the diet. In addition they often do both a colonoscopy and an endo together. In some cases the prep for the lower scope can cause problems that would be considered 'reactive gastropathy' if there was...
  19. ravenwoodglass
    There are a lot of us on here that have had low B12 levels prediet because the damage from celiac can keep us from absorbing B12 from our food or supplements. Not all doctors will test for PA, as was the case with my neuro, who I saw prediagnosis, he simply told me to take sublingual B12 tablets, these bypass the damaged gut and are absorbed through the...
  20. ravenwoodglass
    I am so glad you are doing so well off it and that is often the most reliable 'test' there is. There is a high risk for false negatives on both blood and biopsy procedures which lead to my being almost dead before I was finally diagnosed. There can also be concerns with insurance for some with a formal celiac diagnosis. All in all being self diagnosed...
  21. ravenwoodglass
    A phone call at the number below should give you an answer. Bear in mind that barley malt is often considered a flavoring agent and as such does not need to be disclosed on the label. Costco is a warehouse store that carries food in bulk. They have started a new labeling policy for their Kirkland line of food products in which they will put "no gluten...
  22. ravenwoodglass
    It may be a pain but I would switch to gluten free lotions and body washes as well as all topical products for a while and see if it helps. My DS had KP all thoughout his childhood but it was brushed off by the ped, as was his stunted growth and stomach pain and depressive issues all of which resolved on the the diet, followed strictly. It did take a couple...
  23. ravenwoodglass
    Have you had this checked out by your doctor? Swelling in the neck areas could be from a number of things some of which could be gluten related. It should be evaluated by your physician to be on the safe side.
  24. ravenwoodglass
    You mention taking something to calm your nerves, what is that med and have you checked with your pharmacist to make sure it is gluten free? Celiac an effect the absorption of meds and you may need to have your dosage adjusted. Also not all yogurts are gluten free, make sure that the one you are using is. Yoplait is pretty reliable as far as labeling it...
  25. ravenwoodglass
    The paints you are using should be okay. However I would contact the companies directly and ask if there are any gluten based ingredients. I have not had any issues myself with acrylic based but haven't used oil paints in a while. The biggest risk paint wise is the tempra paints as far as I know. Paints that are marketed as nontoxic are most likely to...
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