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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
    I think you need another GI. What did he say those positive, STRONG positive results were from if not celiac? If your GP is a good one you could ask if he will give you an official diagnosis if you go gluten free and those numbers go down. Your body is making antibodies in response to gluten. IBS, being overweight or being female doesn't cause those antibodies...
  2. ravenwoodglass
    Try not to be too concerned. I am also in that group as are my adult children. Last nights BBT with Sheldon trying to decide on which game system to buy really hits home in a way that is much more humorous than was felt when dealing with it in reality. It is the differnces in people that make the world more interesting. Embrace yours without apology.
  3. ravenwoodglass
    You also could be having issues with casein which is the protein in dairy. After you have been doing well for a bit you could try adding in just hard cheeses daily for a week. If issues come back then likely casien is the issue as well as. or instead of the milk sugar, lactose. Hope you continue to improve it can be a puzzle at times when we have other...
  4. ravenwoodglass
    Have they done an MRI on him yet? If so did they find white spots on it? These are suggestive of the lesions with MS but a spinal tap will not have the bands that are found with MS. I wonder if that is what they want to rule out. As far as the genetic testing goes there are research studies that have been done that show DQ 9 to also be a Celiac related gene...
  5. 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...
  6. 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...
  7. 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...
  8. 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...
  9. ravenwoodglass
    This remended me of something. In some places the waitress station also has the bread for the tables. The waitress station also can have the water pitchers and glasses. I had consumed almost a full glass of water at one of those establishments before I noticed the couple of crumbs floating in the glass. Since then in a restaurant or bar I always try to order...
  10. ravenwoodglass
    You don't need to worry about work as far as hugs, hand shaking, feeding others etc as long as you wash your own hands before you eat. The concern with the make-up and your wife being a gluten eater is more intamite contact like kissing on the lips etc.
  11. ravenwoodglass
    Why would that make you homebound? Your pets will likely be healthier, there are a lot of gluten free makeups and toiletries available and you may discover many that you are using already are safe. It is possible to become more sensitive and there are a lot of pain in the butt precautions we have to take but it is worth it in the end to get our health...
  12. ravenwoodglass
    I agree please go to your doctor and get an antibiotic as soon as you can. In addition to what Cyclinglady mentioned the area that you have the abcess can spread the infection to your brain. This is not a time for self care. By the way you may not want to tell the dentist that you have been lancing the abcess yourself. Know from personal experience it will...
  13. ravenwoodglass
    I get that but just with barley. Is she waiting on a scope? If so keep her on gluten. If she is done with celiac related testing then get her on the diet. You only need one positive blood test to be celiac.
  14. ravenwoodglass
    Maybe what they mean is you can have the rash without the GI issues that most consider the 'hallmark' of celiac. I had the DH rash for many years before I had intestinal symptoms severe enough to warrant attention. Looking back I now know the constant rumbling tummy and constipation were symptoms but I thought they ere just normal for me. I did also have...
  15. ravenwoodglass
    This is such gret news! I first presented with ataxia at about the same age as she did. I progressed much slower but by the time I was diagnosed I could barely walk unaided, had trouble with swallowing and choking (very scarey!), aphasia, vision difficulties, migraines and memory problems along with depression that was at times so severe that if I hadn't...
  16. ravenwoodglass
    Please have your doctor check this out. It could be splinter hemmorage but it also could be cancer. While chances are it isn't anything dire it is best not to take any chances.
  17. ravenwoodglass
    Sorry to hear you are still suffering so much. I wish I had some info that might give you some relief. Please keep in mind that you can have too much of a good thing. It is always a good idea to look up side effects to any med you take. That includes supplements. If your levels for niacin are in a good range please don't take mega doses. As with many...
  18. ravenwoodglass
    Sorry you are having such troubles. Good that they were able to do a colonoscopy in the ER to diagnose the polyps and hemmies. Why didn't they remove the polyps when they did the scope? Sorry you have to go through it again for removal and hope all is clear when they biopsy the polyps. Hang in there.
  19. ravenwoodglass
    If you have DH you have celiac. Did your doctor run liver panels before he prescribed? He need to and he also needs to check liver function periodically while you are on the drug if you choose to take it. Are you gluten free? If you are not you need to be. If your doctor has told you to take Dapsone and not go gluten free you need a different doctor...
  20. ravenwoodglass
    A lot of what you have listed here I could have written myself when I was first diagnosed, and more. Don't lose hope as much of that list may be crossed off after you have healed. Unfortunately that can take some time. Do be sure to check out the Newbie 101 thread at the top of the Coping section it will have a lot of good information for you. Do ask any...
  21. ravenwoodglass
    I thankfully didn't have a preforation but shortly before diagnosis I had a colonoscopy. It was set up by my GP on an emergency basis for the next day. Met the GI minutes before procedure. The doctor said I had the most extensive diverticuli that he had ever seen. My entire large intestine was involved when it usually just effects the left descending. Interestingly...
  22. ravenwoodglass
    Talking to a counselor or psychologist may not change the fact that you have celiac but it can help you change your very negative attitude about the diagnosis. You can live a very full and active life with celiac. It is not the end of your world it is the beginning of one that is healthier and if you allow it to be, happier. I do so hope you can...
  23. ravenwoodglass
    I had lots of other diagnoses before they finally figured out that I was celiac. This will be long. I was diagnosed before the more accurate DGP tests were available and was a false negative on whatever older tests they did. Something not uncommon with folks that have severe DH. Almost everything resolved in time with the diet. I did need to have physical...
  24. ravenwoodglass
    Welcome to the board James. You have been through a lot. ((((((((((((((((((((((hugs)))))))))))))))))))))))))))))). Does the rest of your family still eat gluten foods? If they do you may be getting some cross contamination (CC). CC happens when tiny amounts of gluten get into someones system by doing things like sharing things like butter, nut butters...
  25. ravenwoodglass
    Gluten Ataxia is NOT a psychological aspect of celiac! Psychological aspects do not form brain lesions (UBOs) that can affect balance and cause other issues like aphasia. While some of your advice is sound some of it borders on being dangerous. I have to wonder with your constant referrals to your blog if your main purpose here is to sell the book you have...
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