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ravenwoodglass

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by ravenwoodglass

  1. ravenwoodglass
    You should have a base line blood test done for your levels of stuff like iron, ferritin, folate, calcium. Then a retest of these after 6 months will tell you if you are absorbing properly again. Some doctors may suggest a reendo after 6 months to a year to check if your villi are healing, I myself would only do this if I was still having problems but that...
  2. ravenwoodglass
    Do you know how many calories you are consuming every day? Do you eat a lot of fruits and veggies? Specialty gluten-free stuff is very high in calories, some even more than regular food. For example a gluten free hamburger bun I eat has over 400 calories just in the bun. Add in the meat, some fries or chips and a soda and I have almost my total calorie...
  3. ravenwoodglass
    I use Country Life Active B12 Dibencozide with folic acid 3000 MCG. It has a mild cherry flavor and disolves quickly. I get it at my local health food store, wegmans also has one under their store brand. It sells out quick though.
  4. ravenwoodglass
    Dolly, Have you been doing the diet or gluten light? This can cause a false negative on the tests. You need to be actively consuming gluten, at least 3 or 4 slices of bread worth for at least 3 months to have even a slim chance at an accurate blood test, if there really is such a thing. The rate of false negatives even with folks still consuming a full...
  5. ravenwoodglass
    The TTg is pretty specific. Either you are lucky and this was caught before severe villi damage was done or the more likely prospect is that your biopsies either did not hit the right spot in your 22 ft of small intestine or your doctor may not recognize the changes that occur before full villi destruction sets in. I would get on the diet asap.
  6. ravenwoodglass
    Most of the time this is a response to a food you have eaten. Are you having other severe symptoms? Have you recently added a new supplement or tea? One of the most common sources is licorice. I am sure others will have some other info for you but ususally it isn't something to be concerned about.
  7. ravenwoodglass
    I am so glad to hear you say this. Your GP is an idiot, IMHO to even suggest this after a positive biopsy. What is wrong with doctors these days! You run a very real risk of a serious reaction if you still have damage after all this time and then do a challenge. In addition to finding an iron tablet that is gluten free, make sure it says that on the bottle...
  8. ravenwoodglass
    Boy can I identify. When I had to eliminate soy I thought I would go nuts. Fortunately I soon discovered that my favorite 'tastes and texture like the real thing' bread and pizza shells are free of soy and dairy also. If you haven't found Kinnickinick yet please try to find them. You can at least have a pizza shell that is flaky and soft and chewy and...
  9. ravenwoodglass
    I think before you start looking for other intolerances that you need to get a handle on really being gluten free. Not having full blown celiac, ie gluten intolerance, does not mean that you can handle being gluten lite. You are still damaging your body and may end up with full blown celiac if you don't address the issue. You are also still at risk of...
  10. ravenwoodglass
    Amazing isn't it. I am glad you are getting prompt relief but do be aware that for many of us here Have ups and downs for a while. Not saying you will for sure have them but don't get discouraged if it does happen. Welcome to the family
  11. ravenwoodglass
    Actually you are not a freak at all. In more medically advanced countries they use a gluten suppository and then biopsy the rectal tissue to rule out celiac. They also are working on an oral test that works the same way. Even those without DH will have a reaction. A much more civilized method IMHO, as it means they don't poison someone for months to still...
  12. ravenwoodglass
    Good advice however make sure the doctor is well versed in DH. You need to biopsy the area next to the blisters, not the blisters themselves or you will get a false negative. If you have an active blister you would not have to be eating gluten specially for the biopsy but you do need to be consuming it actively for blood testing and endoscopic biopsies...
  13. ravenwoodglass
    It will take a while for the rash to go away. Topicals are really pretty useless in my experience they actually made me itch worse. One thing that always helped me quickly was a short course of prednizone. They start out with a heavy loading dose and then it decreases. It normally is a ten day to two week dose. Your doctor would have to prescribe it...
  14. ravenwoodglass
    This statement is really very telling IMHO. Do you have DH by any chance? I had problems with 'hemmies' for most of my life. For me they are caused directly by the effect of gluten leaving my body. Once I realized this, which wasn't until after diagnosis and a few good glutenings, they became much less of a concern for me. Painful yes, and I second the...
  15. ravenwoodglass
    That's so wonderful. I look forward to seeing the pics. Congratulations!!!
  16. ravenwoodglass
    When I googled mead honey wine and gluten a number of brands came up that say they are gluten free. You may want to google your brand and gluten and see what comes up. Most will be but there may be the odd one that isn't because they have added some flavoring or something.
  17. ravenwoodglass
    You could do enterolab testing to check and see if you are forming antibodies. And/or after your biopsy is done you can do a trial of the gluten free diet and see if it helps. You should do this regardless of the results of the biopsy and you don't need to wait for the results to be in to start. The truest test is how you respond to the diet.
  18. ravenwoodglass
    I have to second this, another company called Pocono is also in the same area and makes a great buckwheat 'cream of wheat'. I live a few miles from these folks and the products are well worth looking for.
  19. ravenwoodglass
    Check out the related disorders and research section of the board or just post asking specifically about the other endocrine related diseases. I know in my own case that I am now feeling normal and pain free and totally med free for the first time in my life. After 5 years gluten free my DS jokes that I am aging backwards, especially after my hair grew...
  20. ravenwoodglass
    I do so understand the idea that you don't want another diagnosis added to an already long list. But, and here it is a big BUT, you may very well find that many of those seperate diagnosis fall by the wayside as you recover from gluten. Gluten can impact all body systems and many of us are diagnosed with other multiple conditions that are either caused...
  21. ravenwoodglass
    Jason, You may not have been getting symptoms of lactose intolerance because you may not be sensitive to lactose any longer. Depending on how long you have been gluten free your villi may have healed enough to for you to handle lactose now. If you have an intolerance to casien, the protein rather than the lactose, the sugar in milk, that is usually permanent...
  22. ravenwoodglass
    Are you taking sublingual B12? Are you totally gluten free including toiletries and other issues for CC? Have you checked your meds, OTC and Script for gluten? You may want to make sure you are doing all three diligently - the visit to the neuro may be unneeded if you do.
  23. ravenwoodglass
    I would not try this until I had been symptom free for at least a couple of weeks. We don't know how sensitive we are until the antibody reaction has left our systems and that won't happen until you have been gluten free for a while. This item should be challenged just like any other suspect item. Personally I would rather have my gluten free items be...
  24. ravenwoodglass
    This sounds like a clear allergic reaction and seeing as it is getting worse when it comes back it would be very unwise of you to take this med again. Have you been to the doctor? If not you should head there and tell him also of the reaction.
  25. ravenwoodglass
    I sure do wish I had your dentist. One thing we need to keep in mind, and write to congressmen and all medical associations about, is that the labeling laws do not apply to medications either otc or script. The names used identifying the toxin are many and I do sympathize with the folks who have to check supplies, but not as much as I do with those of us...
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