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ravenwoodglass

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Everything posted by ravenwoodglass

  1. I haven't managed to trust another one yet. Doubt I ever will. Fortunately except for the residual damage I have from being undiagnosed for so long my health is pretty good. I think I have had maybe one virus since I was diagnosed and do my best not to get hurt. (knock wood) I do know one thing I will NOT let any ambulance take me to my local hospital if...
  2. IMHO it would be best to go to your regular doctor to order stool tests for parasites. Cleanses can also be dangerous for us with an already compromised digestive system. If you are newly diagnosed it can take some time for us to heal enough for our systems to get back to normal. I know it is hard to be patient but it can seem like we are reacting to all...
  3. Yea it is worthless for most of us. Prices for stuff like gluten free bread are fortunately coming down as more of us are diagnosed. I volunteer at a place that gives out bread that is donated to us from the local stores. My Udi's bread is actually cheaper than many of the specialty wheat breads that come across the table. That can make it even trickier since...
  4. You won't be able to deduct for the fresh food since that is not a specialty gluten free item. Be sure to note the price of the gluten form of the food you are buying gluten free replacements for as you can only deduct the difference in cost. Your medical expenses also must be more than 7.5% of your income, if I remember correctly. If you are going to deduct...
  5. I was thought to have MS for quite a while. Turned out it was gluten ataxia. Was your MS diagnosed with a spinal tap? If not you may be ataxic and if that is the case it may improve once you have been gluten free for a while.
  6. Yea I really like a lot of his books also. His characters really 'come alive'. I heard there is a new Odd Thomas book coming out soon. Can't wait to get my hands on it. My favorite was the first one. His books are definate keepers and rereaders.
  7. A book by Dean Koontz called Strangers. It was much better before it became a you got your mind wiped because you saw something you shouldn't have seen story. But since I am over 400 pages into a 689 page book kinda feel like I have to finish it. We are getting a thunderstorm so off to watch the lightning from my back sunroom. Thanks for the well wishes...
  8. Thanks guys. Just going to spend the day relaxing and waiting for the kids to call. Got dinner for tonight cooked yesterday and I will finish the very long book I have been reading, even if it takes all day.
  9. Stress, illness and hormonal changes can cause hair loss. If you were quite ill when diagnosed or the gluten-free changes are stressful for you that may be what is causing the loss. It takes at least 3 months for the hair to grow back. Something that I find contributes to hair loss other than being glutened is soy because I react to that also. Biotin can...
  10. Wow is that the pot calling the kettle black or what! It is thinking like yours that almost cost me my life and did cost my quality of life for 15 years and left me with permanent damage. I don't know if you are diagnosed yourself but only had one test positive and are in severe denial or if you are a medical person who wants to justify all the suffering...
  11. Have the doctors done a B12 level on you? If not it might be a good idea. If your under 500 some sublingual B12 might help. Make sure you see the test results as some doctors go by 250 as the lower cut off and that has been shown recently to be too low. If you still on gluten it isn't going to hurt to have them do a celiac panel on you. We can show negatives...
  12. Yep and with any ingredient change in the recipe and when I first get home and before I start cooking and when I am done. For me it doesn't have anything to do with gluten though as that was how my Mom taught me to cook.
  13. If all your eating is chicken and watermelon I am not surprised you aren't feeling good. Can you add maybe some potatoes or rice and some other fruits and veggies in?
  14. Welcome back. I hope things improve for you soon. I agree that many folks that haven't dealt with overwhelming fatigue just don't get it. I don't think they understand that if we do push through it we then pay for it for days afterward. It can take a long time for some of us to heal to the point where we really have energy. Hopefully you will reach that point...
  15. You may not have the same great experience with others that work there. It would be great if that was a routine process for dealing with gluten avoiding customers. I hope you remember the name of the person that waited on you. They deserve a raise!
  16. Many of us will go through a withdrawl when we come of of stuff we are intolerant to. In addition you went cold turkey off coffee which can also be very hard. If going off so much also meant you were suddenly eating many more fruits and veggies than usual that can cause some folks to get bloated and perhaps have other issues. Don't know if that might have...
  17. It is possible that being gluten free could have affected the test even though it was only for a short time. Some of us will show up negative even on a full gluten diet. Have you noticed any difference in your symptoms gluten free?
  18. I don't think one can go off of a lack of family history since so many of us are misdiagnosed or diagnosed with something else (sometimes multiple something elses). Some of us will never show up positive on blood work, up to 30%, and biopsy is iffy also. If someone is not having symptoms then I wouldn't be concerned unless they are being screened because...
  19. IMHO number 5, the complete panel would be the one to go with.
  20. Talk to the doctors on the base or your command. I think a lot will depend on whether it is the soldier who is celiac or a family member but your command should know. Good luck.
  21. You could still be celiac even though those tests were negative. Having false negative tests repeatedly caused me many years of progressively worse problems that did finally resolve once I was diagnosed. Of course I was almost dead by then. You do need to be strict with the diet. I know it is disheartening to think about having to cook when you are not...
  22. Well I don't have one of the two most common celiac genes, or at least the ones considered celiac associated here. However my genes are recognized as celiac associated genes in the far and middle east. Here they are considered the genes for RA. I most definately have celiac and after years of misdiagnosis the diet resolved many, many issues that were thought...
  23. When I was a chef I also saw this sort of thing with my chili and crackers. One waitress in particular was a real problem with this even though I told her not to do it she would still dip when my back was turned. Made me really mad since I would have given her a small dish if she just asked. I may be paranoid but because of that I won't order chili at any...
  24. I think this is a standard process with a lot of doctors. A good doctor will want to discuss the findings of your tests with you and what other tests or procedures you may need and what needs to be done with the findings. IMHO this is better than the docs that simply send a note and leave you hanging. Since your testing is done you can now start the diet...
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