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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    It has been interesting reading the varied responses to the Poison Ivy question. I don't think either one of my children ever had it either. My Mom and I used to get it but my twin brother and younger brother never did. Since everyone in my family has celiac I don't know if there is a corelation but one thing that is interesting to me is the 2 of us who both...
  2. ravenwoodglass
    It sounds like you have a good doctor. If you have celiac in your family then your chances of having it yourself a pretty good. I hope you have good results from the diet. Ask us any questions you feel you need to. Although it sounds like your doctor is going to be willing to diagnose you based on family history and response to the diet do call and check...
  3. ravenwoodglass
    For myself being constantly cold was part of the celiac prediagnosis picture along with very low blood pressure. The being constantly hungrey may be because your body isn't getting the nutrients it needs. Some of us have that increase a bit when we first go gluten free as the body is basically going 'yea food I can use, give me more' but it levels out after...
  4. ravenwoodglass
    I would suggest giving the diet a good strict try now that you are done with testing. You don't have to wait to see the doctor again. With a positive blood test it is pretty likely that you are going to benefit from the diet. Read as much as you can here and do start out with whole unprocessed foods in the beginning. It is also helpful for healing to avoid...
  5. ravenwoodglass
    I am so happy for you that the adhesion removal and other procedures have finally gotten rid of that pain! It must be quite a relief to know that you didn't go through all that for nothing. Doing a 'happy dance' for you.
  6. ravenwoodglass
    False negatives on blood work are not uncommon. You have the symptoms, you have a diagnosed family member and you had a triggering event, the gallbladder surgery (although the gallbladders issues could possibly be related to undiagnosed celiac if you have had GI issues for a while). The choice to continue on gluten for another 4 months is up to you. Can you...
  7. ravenwoodglass
    Yea when you get horribly sick for three weeks from a crumb in a water glass it sure can make trying to eat out scarey. I have found one or two restaurants that I trust now but if I am not sure about the place I am more than happy to eat first and just join others for the conversation and company. This disease can be isolating especially at first but we can...
  8. ravenwoodglass
    You might want to add some sublingual B12 and a really good for sure gluten-free multivitamin to your diet. Also try to eat as much unprocessed whole food as you can as that will speed your healing. We also can go through a withdrawl period which can make us feel tired and dragged out. One other thing that I found helpful for energy was Royal Jelly. If your...
  9. ravenwoodglass
    With your strong positive blood tests and a family history it is possible your doctor will give an 'official' diagnosis after you have been on the diet and your symptoms resolve. Do ask the doctor to run a vitamin and mineral panel to make sure you are not deficient and a bone scan for osteoporosis would be a good idea.
  10. ravenwoodglass
    The allergy testing I had was the skin prick kind. After the skin prick test the doctor immediately put me on a strict elimination diet. I really don't know if any foods were tested as the thing from the results I most remember was him saying 'Well your not allergic to beech trees'. He later said that those results made him pretty certain that I was celiac...
  11. ravenwoodglass
    The National Institute of health has this on their info page about celiac disease. The statement that I have bolded is what I consider most pertinent to this discussion. People are free to choose to be as strict as they like and should not be put down for it. Some of us are more sensitive than others and clearly react to gluten in topicals. They should not...
  12. ravenwoodglass
    I am so very sorry you had to go through all this pain. I hope your feeling better soon. If you are still in pain and out of it do call your insurance company and see if they will cover something like a visiting nurse service or call on freinds or relatives to see if perhaps someone could help out even for a nominal fee. You need to rest and recover if you...
  13. ravenwoodglass
    Could be, do you eat other foods or drink other beverages with HFCS? Since it is in so much it should be an easy one to test. Most jellies and jams and even pnut butters have HFCS as well as many beverages. You could try some of those out and see if you get the same reaction.
  14. ravenwoodglass
    Before I was diagnosed I was tested for true allergies. I reacted to 98 out of the 99 things I was tested for. Within a year of being gluten free my allergic reactions were down to 3 things, dogs, yew trees and cats. But the allergies are now so mild that I have no issues with having my little dog sleep with me and the cats are okay as long as they are not...
  15. ravenwoodglass
    What you are describing so well is gluten ataxia. Gluten can attack many organs other than the gut for years before gut symptoms show up, if they do. Doctors unfortunately don't realize this. You can be celiac with no gut symptoms and it sounds like you are someone who fits in this catagory. I think the blood test and biopsy are likely more accurate for folks...
  16. ravenwoodglass
    If it itches it isn't KP. Some people do pick at them even though they don't itch, I know I did as I just couldn't stand the bumps. My DS had them all over his chest and trunk but he left them alone. I also have DH that does cause the little blisters but it itches so badly that sometimes the blisters are scratched off basically as they form. Both resolved...
  17. ravenwoodglass
    Pathologistis are not perfect. I wish I had the link but someone posted a while back a research study where a number of definately diagnosed celiacs had their biopsies submitted to different labs. In the study about 30% of the pathologists reported that the biopsies were normal and when submitted to other labs the biopsies were reported to be definative of...
  18. ravenwoodglass
    As long as your not baking with flour you should be fine. If you wanted you could get some powderfree plastic gloves at your local pharmacy, I get them for stuff like painting and using glues etc. I get medical grade and usually find them near the stuff for diabetes. Have fun with the kids and if you can have them eat at the table and have them wash their...
  19. ravenwoodglass
    The NIH is having a celiac awareness campaign. Here is a link to their testing page. As you know there is a chance of a false negative so do try the diet after all the tests are done. Open Original Shared Link
  20. ravenwoodglass
    First off do not take him off gluten until all the testing is done as that will insure a false negative. Make sure they do a complete celiac panel with testing for total IGA also. They may want to do an endoscopy on him so be sure to keep him on gluten until that is done. Children have an even higher rate of false negatives than adults so do a strict trial...
  21. ravenwoodglass
    Your blood test would be negative because you have been gluten free for 9 months. You could still be celiac. Did you tell the doctor you had been gluten free? You need to do a challenge eating at least 3 to 4 slices of bread a day for about 3 months for any chance of a correct antibody test. Even then there is a 20 to 30% chance of a false negative. If the...
  22. ravenwoodglass
    Many of us avoid gluten ingredients in shampoos, lotions, makeup etc. Anything you put on your body has the capacity to get into your mouth or contact mucous membranes. While gluten is not absorbed through intact skin it can also enter the bloodsteam through broken skin. Some of us do have an allergy as well as an intolerance which would lead to itching and...
  23. ravenwoodglass
    I am not immune to either oak or ivy. When I was a kid I had it really bad, the first time was from peeing in the woods I was about 7 or so and was embarrassed to tell my Mom but when it got infected she noticed my 'funny walk' and we made a quick trip to the doctor. It was about the same time that I started getting DH outbreaks on my arms and legs and...
  24. ravenwoodglass
    Many of us can drink them safely and do so but there are some of us who do get a gluten reaction from them. Don't know which group you fall in.
  25. ravenwoodglass
    Sorry I missed this before but your right emotional issues do not wake you up sick. Celiac can though as one of my GI pointed out. It can also mess with your brain chemistry. I do hope you continue on the diet. As I said in the previous post I am also glad the GI got you right in for a scope and hopefully now that they have seen that something really is going...
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