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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    I do so wish GI doctors would do endos the same time that they do the colonoscopy. It would only add a few minutes to the procedure and folks would have a much better chance of getting an answer. But then they wouldn't be able to get paid for two procedures. Your right about going to the ER just for bloating. They might not laugh you out of the place...
  2. ravenwoodglass
    I would get strict with the diet, there is a real good chance the joint pain and fatigue will resolve. Do try some sublingual B12 also that should help with the fatigue. When I was first diagnosed one of the biggest surprises was seeing the joint and muscle pain resolve. I never expected that. I was just happy my 24/7 D resolved.
  3. ravenwoodglass
  4. ravenwoodglass
    The parts that answered your own question I bolded. If your body was not forming antibodies to gluten reintroducing, also called a challenge, gluten would do........nothing. Your own body is telling you that you need to be gluten free, for most that takes a while as it really is so much more than food. Gene testing is in it's infancy and while not all...
  5. ravenwoodglass
    Lots and lots of swollen glands here. And for lots of others here. The doctors always attributed it to my skin, I have DH and the sores would often get infected. However the glands were swollen and many remained so for a really long time after I was diagnosed. They did eventually go down and I think they may have something to do with the inflammatory...
  6. ravenwoodglass
    It won't hurt and may be informative. If you did not get a base line for your iron, folic acid and vitamin levels at diagnosis you should have her throw that in also. It can be checked at a year to make sure you are absorbing again normally. Throw in a bone density scan too if that wasn't done at diagnosis. No matter what your age.
  7. ravenwoodglass
    It means that because your IGA levels are low you may have a false negative. The truest test is the diet and if your improving on it and you do not plan on having an endoscopy for diagnosis then there is no reason not to continue. Do be aware though that if you are gluten free and then later decide to challenge for a biopsy you will need to challenge for...
  8. ravenwoodglass
    Don't try to force him to eat, he has been through a lot plus at his age you don't want to turn it into a battle of wills. Could you make something warm on the stove that smells really good with cinnamon? You could cut up an apple and simmer it with a bit of water. Or perhaps boil a cut up sweet potatoe and add some cinnamon to that. The smell may help...
  9. ravenwoodglass
    Good thoughts and prayers are coming your way. I hope everything goes smoothly for you.
  10. ravenwoodglass
    Your GI is only considering the end stage of total villi destruction to be diagnostic. Even though biopsies are often a false negative. If he biopsied the wrong place the damage can be missed as it can be spotty in the beginning and you do have 22 ft of small intestine. The likely reason for 1 in 5 testing postive is that 1 in 5 are celiac but just haven...
  11. ravenwoodglass
    Poggy, Welcome to the board. I am glad the operation was successfull and that you are feeling well. You found a great place for any info or support you may need or want to give.
  12. ravenwoodglass
    Go ahead and call your doc and ask for a blood test. Your levels may have been high enough to show at least a low positive. Make sure you get an actual copy of the results. You may only be one or two points into the positive range but positive is positive. Negative is never a for sure definate though, many of us are missed on both blood and biopsy. I...
  13. ravenwoodglass
    I totally and completely agree with this. I don't know why any of your doctors would waffle at all about it. Welcome and feel free to ask anything you need to or just vent. I hope you are feeling better soon.
  14. ravenwoodglass
    Both diverticuli and pancreatitis are often seen in folks with celiac but not because of the diet. The diverticuli may resolve after you have been gluten-free for a while. I had them throughout my entire large intestine when I was diagnosed but a followup colonoscopy 5 years after diagnosis showed they were for the most part gone. Could you have gotten...
  15. ravenwoodglass
    First off if this has cropped up since you went gluten-free do evaluate how much soy you are now consuming. For many of us soy tends to constipate and many of us accidentally replace gluten with soy as it is in so much. In addition if you are really new to the diet your body may be having a natural reaction that may just take a bit of time to calm down...
  16. ravenwoodglass
    It sounds like they may have glutened you during the procedure or with the prep. Were you given anything to calm you before the procedure? Doctors and nurses don't know the gluten statis of the drugs they prescribe we have to make sure they check and if you haven't yet been diagnosed they might not think there was a need. Another possible gluten source...
  17. ravenwoodglass
    You don't have to avoid all vinegars and some of us will not need to avoid any but..... some of us will react to gluten grain distilled vinegars and alcohols. The only way you can know for sure is if you challenge gluten grain vinegars and or alcohol while you are feeling good and not consuming any other risky items. There are also of course some folks...
  18. ravenwoodglass
    Joyful that the pain was gone but incredibly ANGRY that it took so many painfilled years to diagnose me.
  19. ravenwoodglass
    Call your doctor Monday morning and ask to speak to a nurse. When you get the nurse on the phone tell her that you would like to pick up or have faxed a lab slip for a complete celiac panel. You should not need to wait for another appointment to do this. If your regular doctor refuses, which I don't think they will, call the hemo's office and ask for...
  20. ravenwoodglass
    Welcome to the gluten free family. As stated if your blood test was postive you should get on the diet. You found a great place to ask any questions you need to. I hope you heal quickly.
  21. ravenwoodglass
    Or the diagnosed celiacs of today will have their genes tested and be told they can't be celiac because they are not DQ2 or 8. Or that those who are 'only' gluten intolerant won't have autoimmune issues. Or an increased chance of cancer. I agree with Christy, if your body is telling you it is poison even a little bit can hurt more than the medical community...
  22. ravenwoodglass
    I would toss that product it may be counterfit with an interesting phone number like that. Did you read the rep the UPC code to verify that it was actually a product of theirs, not that that couldn't be faked also. I also avoid their products and since you were talking to a rep in heaven knows where I agree with Shay that they were most likely saying barley...
  23. ravenwoodglass
    Oh my gosh yes. Be very thankful you showed up in blood work.
  24. ravenwoodglass
    You certainly sound like one of us. I would go ahead and get the Ttg done and if you want to do the biopsy. But do be aware that both can have false negatives. If you do plan on furthur testing do not go gluten free yet. You have to actively consuming a full gluten diet for those to even have a chance of being positive. The blood test you already had...
  25. ravenwoodglass
    Oh boy could I rant along with you about doctors, as can most of us here. Inflammation is common with celiac and can really appear just about anywhere in the body. Your doctor really can't tell you with any certainty until he gets the pathologists report back. Do make sure you get an actual copy of the report, some doctors just don't recognize celiac...
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