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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Irish sorry you are flaring so badly. I also had lesions in my hair and it is not pleasant to put it mildly. You have likely already done this but have you checked your shampoos etc for gluten ingredients? Gluten can't get through intact skin but when we have DH the skin is hardly intact. It took me a while to realize I needed to change my shampoo and conditioner...
  2. ravenwoodglass
    It could be celiac or a it could be something else. You need to start eating gluten again if you are going to be tested for celiac. If you are not eating gluten your body won't have the antibodies that the doctors will be looking for to diagnose you. Hope this gets figured out for you soon.
  3. ravenwoodglass
    Do you eat the coconut oil or put it on the lesions? I find it useful for dry skin and hair also when applied topically. Do you know you should limit iodine until your lesions are healed? Iodine can keep the antibodies active in the skin. I only had to drop iodized salt but others have had to limit high iodine foods also. I stopped getting lesions unless...
  4. ravenwoodglass
    There are also gluten free dining cards available for many languages that may help in her host homes, shops or restaurants if she isn't fluent in French or Spanish. I have seen quite a few folks that have traveled extensively that are on the board and have done it without issues. Maybe you could also post your concerns in the International section. There...
  5. ravenwoodglass
    In addition the diverticuli may resolve after a time gluten-free. I had extensive diverticuli throughout my entire large intestine before my celiac diagnosis. GI said he had never seen anything like it. When I had a follow up colonoscopy 5 years after diagnosis they were almost all gone. Make sure you check those food based supplements as some will be labeled...
  6. ravenwoodglass
    In addition to getting tested for celiac make sure the doctor does stool testing to rule out any possible other causes. Some food borne infections/parasites need antibiotics or other meds to fully clear up. Hope you get some answers soon and are feeling better.
  7. ravenwoodglass
    Did your doctor do stool testing to check for parasites? If not that should be done. The medication that you were given does have D as a side effect so even if the diet was helping (if you are in fact celiac) the side effects of the med may be masking any improvement. Meanwhile get back on gluten and get full panels done along with the biopsy. How soon...
  8. ravenwoodglass
    Thanks for posting. So sad to see so many that had similiar experiences to my own. Every doctor should have to read that before they get their license. So much ignorance in the medical community. It is nice to see I wasn't as alone as I always felt I was but why do so many of us have to suffer for so long.
  9. ravenwoodglass
    If you are going to get the endo do go back on gluten for at least a few weeks before you get it done. You don't want a false negative. AFAIK candida is not going to cause a positive that high on the celiac testing for which you had a strong positive result.
  10. ravenwoodglass
    Talk to your doctor about your fears. If you had strongly positive blood tests the doctor might consent to give you a diagnosis based on symptom relief on the diet and blood antibody levels going down.
  11. ravenwoodglass
    May I ask why? Even if someone has severe neurological impact from celiac there isn't much they can do except rule out other issues. The nervous system can take time to heal and I don't think there is anything that can be done to speed it up other than supplement vitamin deficiencies and stay very clean with the diet. I did find a physical therapist to be...
  12. ravenwoodglass
    The test that you were positive in is specific to celiac. IMHO the choice to have a endo done is really up to you. NVSMom has mentioned some of the reasons you may want to challenge and get it done. It would require a gluten challenge though. Have you talked to your regular MD about this issue and showed them the test results? It would be good to have their...
  13. ravenwoodglass
    Welcome to the board. Are you on any medication for the MC? Some meds cause loose stool and if that is the case then things should improve a bit more when you are off the medication. Do be sure to check and make sure that any meds you take are gluten free. That said it can take some time to heal. How long have you been gluten free? It is a good idea to drop...
  14. ravenwoodglass
    Congrats on the acceptance. You may want to talk to a supervisor at the dining hall and see if they are 'celiac aware' and what precautions they take to feed you safely. If they can't feed you safely then they may drop the charges related to food on your bill so you can use that money to feed yourself safely. Many years ago they put my DD in senior housing...
  15. ravenwoodglass
    Although I rarely get glutened now when I do it is bad. I have extensive abdominal adhesions and it feels like my intestines are being ripped apart. I will also end up with a GI bleed and hours of explosive D. Because of this and because it takes up to 3 weeks for all the other effects to go away I am very careful. Have you had any celiac testing at all...
  16. ravenwoodglass
    Have you had the celiac panel blood tests? That might be a good first step. Then if those are positive talk to your doctor about your fears of the endoscopy. If the doctor can not lay those fears to rest ask him/her if positive blood work with levels decreasing after being on the diet and symptom relief is enough for him to consider diagnosing you. That...
  17. ravenwoodglass
    Welcome to the board. What celiac testing have you had done? Some doctors don't do a complete panel with the blood work and some GIs will only do one biopsy and if damage is patchy it can be missed. Let us know what tests were done and we can tell you if you should get more testing. That said NCGS is just as serious as celiac and whether you want to persue...
  18. ravenwoodglass
    I only had to drop the iodized salt and made sure it wasn't in my vitamins and I healed pretty quickly. Some may need to go to extremes but not everyone has to drop stuff like potatoes, egg yolks and fish etc.
  19. ravenwoodglass
    I use either Garneir products or Suave. Both will label clearly and are inexpensive.
  20. ravenwoodglass
    It would seem like they would be more aware of the connection since it is not unusual for us to have wonky liver panels prediagnosis. My doctors were convinced I drank but not admitting it to them. My panels went back to normal after a time gluten free. If we had known the connection sooner perhaps my brother would still be with me as his liver was gone by...
  21. ravenwoodglass
    You have to be eating gluten for the test to be accurate. If you want a diagnosis of Celiac then you need to get back on gluten for a couple of months and then retest.
  22. ravenwoodglass
    Did they test your total IGA? What other celiac tests were run, if any. It wouldn't hurt to have those panels rerun. That said there are folks who have DH that do come back with a false negatives on testing. Have they ever done a DH biopsy? They would biopsy intact skin next to an active lesion. I don't know if you are presently gluten free but if you are...
  23. ravenwoodglass
    I am sorry they had to put you on those. There is a big difference between those and the short term prednisone. I agree those stronger steroids can have some nasty side effects. I do hope your doctor had you taper off them. I have never taken the stronger steroids and hope to never have to.
  24. ravenwoodglass
    I eat plain Lays all the time since I go for stuff with the least ingredients and they only have potatos, salt and oil. IMHO it would be better to have a supply of frozen gluten-free dinner stuff than try to eat in a restaurant if you are traveling. When I went to my DD's wedding I took my toaster, a hot plate and a cooking pot from home, a couple cans...
  25. ravenwoodglass
    I don't think that happens to everyone. Prednisone would give me one to two months relief even before I was gluten free. Of course I only did the 10 day decreasing dose it was never given to me as a long term med and it was always a high start and then a taper off until they were gone. It also doesn't look like the OP was prescribed it for the DH but rather...
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