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ravenwoodglass

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Everything posted by ravenwoodglass

  1. Please do the diet. If you had postive bloodwork and inflammation in the biopsy you really need to give the diet a good try. Geminii put it very well, there a lots of false negatives on biopsy, and on blood tests also. You have a postive blood test and you intestine definately doesn't like something your giving it. My bet would be that you are one of...
  2. Wow Tiffany what a great description of what is going on. Thanks for posting it. As far as it being associated with celiac all I can say is that my joints don't creak and pop anymore. I had this since I was little along with pain, and always thought it was due to my extremly hypermobile joints. I wonder though if it had something more to do with...
  3. You could have another intolerance. Did you cut out dairy when you were diagnosed? If not do so now. Another real common intolerance is soy. Unfortunately many of the gluten free baked goods items contain soy and we often find we are eating a great deal more than before diagnosis. I would cut that out for now also. When your feeling better you can add...
  4. They may be accurate for true allergies but they will not tell you if you have celiac. The exception would be if the patch tests produced itchy blisters. If they did then a derm should biopsy the skin next to the rash to check for the antibodies that would deem the reaction to be dermatitis herpeformis, or the skin form of celiac. IF the DH tests are postive...
  5. I would have him see the endocrinologist and make certain there are no growth hormone problems as well as checking him to see if gluten may be sneaking in. I know from family expereince how devestating it can be for a young man to be abnormally short. My DS had his growth stunted by undiagnosed celiac and as an adult is only barely 5 ft tall. This had...
  6. Have you tried eliminating soy and dairy for while to see if it helps? Many of us have other intolerances and soy and casien top the list.
  7. First celiac is not an allergy so that isn't going to show up with allergy testing unless you also have an allergy as well as gluten intolerance. Don't feel bad for all those positives, they were all a thing of the past within just a couple of months. Along with my asthma, arthritis and fibro symptoms. The elimination diet, which I really hope they are...
  8. Protinix is for GERD, are you still having acid reflux or stomach pain? If they didn't find any evidence of ulcers or GERD your doctor should have no issues with you stopping it. Here is a bit of info on it from the makers website Important Product and Safety Information Indications PROTONIX is a prescription drug that is used to treat and maintain...
  9. I would not eat foods that you know you have a allergic reaction to. Your doctor will do testing under controlled circumstances so that if you should have a severe allergic reaction they will be there to help. Hopefully your allergist will deal with intolerances as well as true allergies. I was lucky to find the one I had, he was the key to my being diagnosed...
  10. I am glad you were able to get a definate answer. Welcome to the family. I hope you are feeling great soon. Make sure you let all your first degree relatives know, brothers, sisters etc as well as doing the testing on your children.
  11. Your deficiencies as well as the positive blood test make it very likely you are one of us. If you decide to go with an endoscopy keep eating gluten until that is done then immediately upon leaving the office go gluten free. Your body will likely give you your answer before you even get the test results. There are high rates of false negatives with both...
  12. I am glad to hear your back off the gluten filled train. Please do as the other poster suggested and keep safe options available. It isn't easy but you know what gluten is doing to you and it just isn't worth it.
  13. The biopsy report sounds like it was postive. Often damage can not be seen with the naked eye so that is why they biopsy. I would go ahead and go gluten free you don't need to wait for the follow up as the testing for celiac is finished. You will likely find you get a great deal of relief even before you go back for the results. Start out with simple...
  14. Best wishes, the worst is over. I will keep you in my thoughts and pray the doctor takes lots of biopsies. I am glad to hear you will be gluten free as soon as the tests are done.
  15. Well it looks like your gluten challenge is positive so be sure to go gluten free again as soon as they do the biopsy. You don't need to wait for the results. One thing that comes to mind, and keep in mind I am not a medical professional, is that gluten may be impacting your gallbladder. The pain you are describing could possibly be from that. The tingling...
  16. If you feel the strong need for diagnosis another option might be Enterolab, they test for stool antibodies and do genetic testing for all celiac related genes, not just DQ2or DQ8.
  17. There are many people who have a hard time getting of Xanax, it does work wonders though if it is needed. I try not to take it every day and most days when I do take it I take only half a dose. I was really scared to take it because of the addiction risk but my RN daughter pointed out that I was unknowingly given Valium for a couple of years in Librax and...
  18. Have you checked with companies to make certain that every med and supplement OTC and script are gluten-free? How about non food items, craft items, household repair materials, pet foods and litters, lotions, shampoos everything you come in contact with?
  19. You have gotten some good advice and I hope you now know you are not alone in this issue. I have severe anxiety issues due to PTSD that got worse once I went gluten free. Before i was diagnosed and now only when glutened I had issues more with depression than anxiety as far as being related to celiac goes. That started long before any of the GI symptoms...
  20. I think the best person to ask about this would be your son's doctor. He should know whether this is going to be safe for your son.
  21. I do so hate the term 'just gluten sensitivity' it makes it seem that it is less serious than 'celiac'. My primary presenting symptoms for years were neuro damage and the skin form of celiac,DH. Many doctors would consider me to be 'just gluten intolerant' since my blood work has always been a false negative. If you read my signature you will see how serious...
  22. Many times the severest of the reaction takes up to 3 or 4 days. Hopefully the reaction you have had will be all you will have but don't be surprised if it takes a day or two for the D to hit. If and when it does if at all possible don't medicate it, let your system clear it out. I hope if you are someone who doesn't have a delayed violent reaction that...
  23. I really like these. My favorites are the olive and the chocolate. The chocolate were great with a bit of cream cheese and raspberries. Although the company makes one with oats (last I checked) I never had any CC issues with any of the others.
  24. You should have hung up the phone the minute this guy started asking if you had been diagnosed. Or you should have just told him yes. Your medical history is none of his business. Since you have this reps name I would write a letter to his head office and tell them about this. He was way out of line. Oh I would also draw a black line thru the UPC codes...
  25. Yes I would eliminate all of them, it will be hard at first but you will still have plenty you can eat. There are yeast free breads that you will be able to eat and there are egg replacers that you can use in recipes. You'll be able to have 'quick breads and cakes' that use baking powder or soda. Your malabsorption levels are very high so I would imagine...
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