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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Yes but gut symptoms were fairly mild for a long time. They did progress to total daily misery eventually. I had a great deal of numbness and tingling in my hands but not as much in my feet and legs. I just lost balance and eventually one leg idin't function properly. It was a flat line on an EMG. A year or two before diagnosis I started having trouble...
  2. ravenwoodglass
    I was thought to have MS that turned out to be gluten ataxia. When someone has ataxia there are UBO's (unidentified bright objects and yes that is the medical term for them) that are very similiar to the lesions seen with MS. However with MS a spinal tap will show debris that will not be found with gluten ataxia. Your new family doctor is not a Neurologist...
  3. ravenwoodglass
    Are the doctors sure it is shingles? The skin form of celiac, DH, is a painful burning insanely itchy rash. I have DH and it was misdiagnosed as various things from poison ivy to pickers acne to atopic dermatitis. Didn't know it was DH till after I was diagnosed celiac and the lesions went away leaving behind their distinctive purple scars. If it is shingles...
  4. ravenwoodglass
    Sorry you are going through all this. Have they rerun your celiac panels? That should be the first thing your new doctors do to make sure that your levels are down.
  5. ravenwoodglass
    I know it is little comfort but that is a normal reaction to being glutened. All you can do let your body clear itself and try your best not to get glutened again. Do read the Newbie 101 thread at the top of the Coping section as it has a lot of good info to keep you safe. Being celiac and being gluten free unfortunately is so much more than just what we...
  6. ravenwoodglass
    Have you contacted the GI who diagnosed her celiac? If not that would be a good idea so you can make sure nothing else is going on. In addition if she is taking a lot of different supplements you may want to stop all for a few days and see if the pain resolves. If it does then add them back in one at a time a week apart to see if she is adversly reacting...
  7. ravenwoodglass
    Did you look at the atricle? If you have pn you have neuro impact. The article actually supports what you are saying about small amounts of CC in coffee causing your symptoms. Get one of the empty reuseable k-cup filters, run some vinegar through your machine and then a few cycles of clear water and use a whole bean you grind yourself or something from the...
  8. ravenwoodglass
    There is a company in my city that only produces canned veggies and fruit, including apple chips and applesauce. Why should they have to go through the expense of having the items 'certified' gluten free when that is all they produce? Naturally gluten free should be good enough. You may want to go with all unprocessed items for a while and then add items...
  9. ravenwoodglass
    I go with Wegmans brand ground. You may want to get whole beans and grind them yourself. If you felt the need you could even rinse them off before grinding if it gives you peace of mind. You are going to have a hard time finding very many coffees that are just coffee that are certified. If I am not mistaken the FDA doesn't want companies to label single...
  10. ravenwoodglass
    I don't think it is a lawsuit you could ever win since celiac has been around for a very, very long time. It was first recognized in Ancient Rome and came be recognized by modern man after either WWI or WWII, can't remember which. No doubt that many things sprayed on our foods are not good for us but pesticides are certainly not the root cause of celiac.
  11. ravenwoodglass
    SSri's always made me worse. They're quite effective for many that take them but the didn't agree with me at all. I have PTSD and I take Alprazolam when things get very bad. I don't need it every day though. If you need something on a daily basis it might not be good since it is quite addictive. Talk therapy and excercise can be very helpful depending...
  12. ravenwoodglass
    Grainless Baker makes a long Baguette that is great for sub type sandwiches. It is kept frozen and can be refrozen after being thawed (no waste). It holds together well and has a nice crust. it is tapioca based and is 'airy' on the inside but that makes it easier to stuff lots of goodies inside. A half is like a whole of regular sub rolls. I zap them unfilled...
  13. ravenwoodglass
    I just watched this and it is so funny. She does curse in it but her way of pronouncing gluten makes it worth the F and S bombs. You have to watch it to the end and keep in mind it is satire. Open Original Shared Link
  14. ravenwoodglass
    I don't know if they're in your area but SCORE was quite helpful to me when I was working on opening my store. SCORE is an organization of retired business people that help out new businesses on a volunteer basis. One thing I learned the hard way was that I really did need to hire someone and I didn't budget for it in my business plan. Unless you...
  15. ravenwoodglass
    If there is a dental college near you check and see if they can help. You should also give the doctor who prescribed the antibiotic a call and see if you can get a refill or a different antibiotic. The office may even have sample packs of meds that they could give you if the cost of the scripts is too much. You really shouldn't be taking an antibiotic meant...
  16. ravenwoodglass
    I found Immodium to be the most effective in stopping the D during the many long years it took to get diagnosed. Pepto liquid helped a great deal with stomach pain but didn't do a thing for me to help with the D. An anti-inflammatory helped with some of the other pain, like joint and headaches but didn't give complete relief. If things get too bad do contact...
  17. ravenwoodglass
    Those are some really high results. As Karen said the doctor may want to do an endoscopy but they may diagnose without one with results that high. If you do think you will want to have them do an endoscopy do be sure to keep him eating gluten until that is done. Then you can get him gluten free. Do check out the Newbie 101 thread at the top of the Coping...
  18. ravenwoodglass
    As long as you have kept gluten in your diet there is no need to consume larger amounts the day before your procedure. You may want to consume your favorite gluten foods, especially if you had positive blood work, but there is no need to go overboard.
  19. ravenwoodglass
    This sounds like a reaction to the numbing agent they would use with the endoscope. Have you called your doctor's office about this? If not call and ask to speak to a nurse.
  20. ravenwoodglass
    I was diagnosed with a seizure disorder years before I finally got diagnosed celiac. It was a feature of gluten ataxia and I haven't had one now since a short time after diagnosis. The lesion your docotr found on the MRI was likely a 'UBO' or unidentified bright object. These are sometimes mistaken for the lesions you get with MS but the debris found in a...
  21. ravenwoodglass
    Have they checked her homocistine levels? If she is impacted by the defect those levels would be abnormal.
  22. ravenwoodglass
    Have you been for the most part gluten free? if so your blood test may show a false negative. Be sure to let the doctors know if you haven't been eating gluten. If that is the case you will need to do a gluten challenge for testing. Steroids will also impact the blood testing. I don't know how long they would need to be stopped before testing. Perhaps someone...
  23. ravenwoodglass
    I hope the new doctor is able to help. I had ataxia from childhood and by the time I was diagnosed almost 40 years later was dependant on canes or walls to walk and electromylograms on my right leg were a flat line. I did recover enough to be able to function normally but it took time. Your daughters response to the diet is great and she should take much...
  24. ravenwoodglass
    Watch TV. I am sitting watching my 20 lb tuxedo kitty watch TV. He is just sitting quietly and attentively watching the news with me. My other kitty loves to sit on my lap and watch me do puzzles or video games on the computer. What I find odd is that they don't make any attempt to go after anything on the screens. But put a string or a shadow in front of...
  25. ravenwoodglass
    You stirred some very fond memories of a beautiful area of the country. Have to go route 1 north from San Fran more more time in my life. Sorry very off topic but..
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