Jump to content

ravenwoodglass

Advanced Members
 View Profile  See their activity

  • Posts

    14,675

  • Joined

  • Last visited

  • Days Won

    153

 Content Type 

Profiles

Forums

Events

Blogs

Latest Celiac Disease News & Research:

Everything posted by ravenwoodglass

  1. ravenwoodglass
    Yes it could be why. Your intestines have fully healed and it can take a lot of gluten to damage them as bad as they were before you were diagnosed. But that does not mean the antibody effect has stopped and as we know the antibodies can effect other organs even before the villi are totally gone. This is also why doctors for so long considered that celiac...
  2. ravenwoodglass
    I've heard for the longest time that fake crab meat has gluten. Why is this? I thought this was just another fish? Gluten is used in fake crabmeat to hold it together. Also, what is the chance of a sushi place using glutenous rice? Is it worth asking? Glutenous rice is simply a kind of rice that sticks together. This shouldn't be an issue. ...
  3. ravenwoodglass
    It means gluten is sneaking in somewhere. Have you checked all your toiletries, lotions, shampoos and such for gluten? Do you eat out frequently, consume much gluten free but 'made in a facility that processes gluten' foods, or do you have a mixed household? Have you checked all your supplements, meds both OTC and script with either the company that makes...
  4. ravenwoodglass
    It could be, it is thought that sometimes after we heal completly some of us may stop reacting to small amounts. Well I should say obviously reacting cause it is still doing damage. A small amount may not be enough once to cause a reaction but if the item is continued to be consumed, like with CC issues eventually the antibodies will build up enough to...
  5. ravenwoodglass
    I thought I was being glutened by those and the regular Ener-g ones. It turned out that I have an issue with soy. I now eat the Wylde pretzels put out by Ener-g with no issues whatsoever. It may not be the case for you but thought I would throw the possibility out there.
  6. ravenwoodglass
    That nurse was a twit and you should mention her advice to your doctor the next time you see him. If this doesn't clear up soon do get into the doctors and have them do stool tests. You could have picked up something like salmonella or another foodborne bacteria. When antidiarheals don't work and it has gone on as long as this has it very well may not...
  7. ravenwoodglass
    Count me in there also. Gluten grain vodka is the worst for me. Just one of those and I don't remember anything that happens all night, although I have been told no one noticed and I didn't act overly intoxicated. I would also want to die the next day I would be so sick. I can have 3 or 4 potato vodka mixed drinks and not only feel just fine the next...
  8. ravenwoodglass
    Have you seen Green's? I found it in Wegmans here in the states and that might satisfy your craving. Open Original Shared Link
  9. ravenwoodglass
    Bring him here and let him read as many posts as he will, that will be a start. What may help to is after he sees you are feeling better and then sees the violent recurrance of symptoms when you get glutened. Many folks make the big step of making the household pretty much gluten free. They restrict the bread and gluten products to a certain area only...
  10. ravenwoodglass
    I can identify. I used to wonder why I got horrible hangovers from nonalcoholic beer. It might not be a bad idea to visit the doctor and ask them to do a complete celiac panel. Do it before you go off gluten.
  11. ravenwoodglass
    I agree with this wholeheartedly, especially the sentences I bolded. The only difference is I ask them to look them up when I drop them off. I don't even bother asking the doctor for info, they just don't have the knowledge or the time to learn about it. Pharms are specifically trained to be able to either answer questions or quickly find the answer and...
  12. ravenwoodglass
    Sure. Alot depends on how high the antibodies were to begin with and everyone is an individual. It also shows you are doing a real good job with the diet. Hopefully you are feeing better too.
  13. ravenwoodglass
    Did your doctor refer you to an ear, nose and throat doctor to confirm that your balance issues are ear related? There is a disorder called gluten ataxia that effects balance. If the ENT says your ears are fine you might want to see a neuro if this doesn't resolve. A neurologist can diagnose gluten ataxia with an MRI which will show distinct white spots...
  14. ravenwoodglass
    I have wondered about that also, hopefully someone can shed some light on the subject. There have been many autoimmune illnesses that I have fit over the years but the tests always came back negative. My celiac gene is an RA gene here in the US but I never showed positive for the antibodies even with definate RA symptoms. Most now in remission gluten-free...
  15. ravenwoodglass
    I hope they get it figured out soon for you. Hopefully you know of the chance of a false negative on bloods and even bioopsy. When you are done with all the testing you choose to do do give the diet a good strict try. We are here and many of us have had a long road to diagnosis mainly because doctors fail to mention trying the diet no matter what the test...
  16. ravenwoodglass
    The choice of whether to biopsy or not is really up to you. Was your son off gluten for a bit? Was he doing better? Are they making him do a 3 month gluten challenge for the biopsy? With his blood tests combined with the genetic tests that were both postive he really has already been diagnosed. The choice of whether to put him through the challenge...
  17. ravenwoodglass
    It can take awhile for the nerves to heal. I saw a decrease in brain fog, depression and anxiety pretty quickly but a lot of the other neuro stuff took about 6 months to see a difference. I have gluten ataxia and even though that is much better and I can now walk pretty much unaided it is still there after 6 years. That I have found out is not unusual...
  18. ravenwoodglass
    It does take a while for the antibodies to come down and most doctors will check them at 6 months. The choice of whether to rebiopsy is IMHO up to you. If you are still having issues then it may be needed to rule out other conditions but if you blood levels go down and you have fully healed then the rebiopsy isn't something that is absolutely needed. There...
  19. ravenwoodglass
    If you do choose to biopsy for diagnosis you need to go back on a full gluten diet for about 3 months. Even then there is always the risk of a false negative. If you are having a biopsy just to check if you are healing then a challenge is not needed.
  20. ravenwoodglass
    Sounds like you are having good results. I hope things continue to improve.
  21. ravenwoodglass
    Yup, thats what mine looked like. The best person to tell you for sure though is a dermatologist. They can biopsy the area next to the rash and look for antibodies.
  22. ravenwoodglass
    Glad you got a referral to the eye doctor. I am also really glad that you are going to be evaluated by the neuro. Don't get mad at your doctors and do tell your neuro about not just the vision stuff but also any other symptoms you may have. They may very well all be related. You may even find the neuro refers you to a GI doctor, don't be surprised if...
  23. ravenwoodglass
    The best person to ask is going to be the pharmacist. If they are busy or you want to check yourself the drug will come with a sheet which gives contact numbers for the company that makes it. You can call the company themselves. If this is a generic form of this drug you should double check on each refill as the binders can change at will on generics.
  24. ravenwoodglass
    I'm one of the ones she is referring to. The NIH estimates that 30% of us will show up negative on blood tests and biopsies are really hit and miss if the damage is patchy. There are also changes that precede full vilii destruction that are often not recognized as being from gluten. Doctors seem very reluctant to diagnose celiac until the villi are totally...
  25. ravenwoodglass
    I would mention this to your doctor.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.