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ravenwoodglass

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Everything posted by ravenwoodglass

  1. This may seem like a 'duh' question so please don't be offended if it is something you have already considered but.... Have you checked to make absolutely certain that any meds the doctor prescribes and all your supplements are gluten free? I agree with the other poster who advised a referral to a specialist. I hope you get to the bottom of this soon and...
  2. Not all ice creams are gluten free. I would find out the maker of the ice cream and check with them directly.
  3. Your not alone. And doctors wonder why we lose trust in them. I don't show up in blood work but do you think even one doctor told me to give the diet a try? Do you think even one of them tested my son, we could have both been poster children for celiac. Nope just handed us more pills, pushed for antidepressants that caused serious lifethreatening side...
  4. False negatives are unfortunately all to common. Sometimes our body gives us the answer that testing cannot. Since you are done with the testing now is the time to give the diet a good strict try. If you are still consuming dairy you should delete it from your diet for a while as the same area's damaged by celiac or gluten intolerance are the areas responsible...
  5. Unfortunately the blood tests do leave some of us still undiagnosed because they do have a high rate of false negatives. If you are going to have the blood testing done you need to go back on gluten for at least a couple of months first. Although rates for false negative are higher for children than for adults I would ask your daughters pediatrician to...
  6. I'm sorry that she is still suffering. My hoarding was brought on by suddenly losing everything I owned and being homeless and starving a couple times in my young adult life. For me therapy has been quite helpful. If the trauma occured when she was so young she may not remember it but the effects of severe trauma can be longlasting. A councelor has been...
  7. My DD's primary GI symptom was acid reflux and ulcers. Hers was relieved promptly by the diet. I had some problems with reflux but they were insignificant to me because I had so many other issues. For both myself and my DD pepto bismal liquid brought significant relief from the pain, better than the meds prescribed. If you have gotten a great deal of...
  8. I had cold induced asthma and pressure hives prediagnosis. Thankfully I didn't have cold induced hives as I wouldn't be able to leave my house for months at a time where I live. The hives took a couple of months to resolve and I have only had them a few times in the last 7 years. The only time I get them now is when I get 'soyed' but thankfully they don...
  9. If you are having acid reflux symptoms you are not symptom free. Chances are you are also having other impacts that you may not realize are celiac related. Be thankful this was found in the earlier stages and you have found a good place to learn about all the ins and outs of the diet.
  10. It definately had a triumphant feeling to it. I have many good memories of living in California and the video brought back memories of the beauty of the area and freinds that I had not thought of in years. I do miss being there but the tears were tears of joy for you.
  11. She may just be one of those kids that we often have that are complete opposites from us. I have two of them. I drove them crazy with my disorganization when they were younger and I do love my knicknacks. They are all over the place. The kids, now young adults have apartments that I consider stark. If her disorganization seems to be an issue, especially...
  12. "Part of my problem is making her be responsible for keeping things neat and organized. She's 11 now and I feel she should be able to do this. But apparently not" She is most likely too young to be fully responsible for this. I was in the restaurant business for years and trying to teach people how to rotate stock and properly form an order was not as...
  13. If the salad was made and then packaged at the deli the blue cheese may be safe but there may be a high risk of CC because of where and how it was made.
  14. Gluten does not have to reach the gut. It easily can enter the system through any mucosa. Here are a couple of links to info on that. They include info on testing using rectal, oral and nasal mucosa. Hopefully someday the US will start to use these testing methods as they are much less barbaric than poisoning us for weeks. If a reaction can be seen using...
  15. You are very talented with that camera and the editing. It would make a great PSA. It brought me to tears although I know it wasn't meant to. I am so happy for you that you have made such progress and are no longer limited in doing the things that you enjoy. And quite jealous of that bike ride.
  16. I could be wrong but I think once you have gotten farther on in the healing that is going to remove a lot of the doubt from your mind. After you have healed a bit more you can try adding stuff back in one at a time for a week and watch for a reaction. With refractory sprue people don't respond to the diet. You are responding so it is doubtful that will...
  17. If the label says just vinegar in the US it is apple cider vinegar. In the US if it is distilled the label has to say 'distilled'.
  18. Not all celiacs can eat oatmeal, some of us will react. Also in gluten-free mixes and prepared foods there are often things we have not eaten a lot of before and some of us don't tolerate some of the gluten free flours. I can't do many of the BRM products because my body doesn't like sorghum and many others are out for me because they have soy. Early on...
  19. I can't use the words I feel like using about that 'doctor'. You say you did the diet for 3 weeks and noticed a real difference in the way you felt. IMHO I would take that and your postive blood tests as your diagnosis and just get on with healing.
  20. I wonder what they would find if they tested Type2 folks ? I think if they tested people with a lot of other autoimmune conditions they would find many of them test positive also.
  21. If you are showing blood and protein in your urine that could maybe be a possible sign of kidney impact. I get both when glutened but since I went gluten-free that is the only time I have those issues. I am glad your doctor sent your specimen in for more testing. It does sound like your doctor is on top of this. I would imagine your next step would be...
  22. I would start the diet. Your IGG is a strong positive and endoscopies can have a false negative.
  23. I would call the company and ask. It is most likely from soy but you should verify.
  24. First off false negatives are not uncommon. If you have only been ill for 6 weeks that may not be long enough for the antibodies to have built up enough or you may be one of the many who wouldn't show positive on the blood test even when close to dieing. I am one of the latter. Are you scheduled for an endoscopy? If you are keep eating gluten until...
  25. Thank you so much for posting the location and the doctor. I have been thinking about relocating and almost jumped for joy when I saw this as I am looking to move to NC hopefully within a year ar so. As for the endo. Personally I would prefer that to the pill cam. With the endo most times there is no real prep and you go in, go to sleep, wake up...
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