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
    Yea he was a great doctor and very old school. He even sat across his desk typing on an old Underwood Typewriter using carbon paper as we talked. Technically he didn't diagnose me my GI doctor did but since all my doctors took my false negative blood work as a for sure I didn't have celiac I would have never been diagnosed without him. When I went back for...
  2. ravenwoodglass
    I agree completely with this but I have to add that as a person who shows false negative on blood tests my allergist literally saved my life. He was however one of the rare ones that would guide someone through an elimination diet after doing testing for true allergies. By the time I went to him I was close to death, no exaggeration, and once I reacted to...
  3. ravenwoodglass
    False positives are almost unheard of. Many times when people are told the blood tests are a false positive it is because the endo was negative. The rate of false negatives for endos is high for a variety of reasons, not enough samples, screw ups in the lab, wrong area was biopsied, damage was patchy and the damaged area was missed or even because the doctor...
  4. ravenwoodglass
    Can you have her ped do a celiac panel including the total IGA? If she isn't producing enough IGA then that would throw off the IGA tests. It looks like she should definately avoid soy and eggs. Was she low or off gluten before the tests? That would cause a false negative on the celiac testing also. She does have one of the main celiac associated genes along...
  5. ravenwoodglass
    Your doctor can easily give you the endo when he does the lower scope. Some doctors won't do that because then they only have one 'surgery' charge. If they do them on different days then it is 2 charges for the room, the anesthesiologist, the doctor, the lab etc.... You doctor works for you. Call the office and tell them that you want the endo done at the...
  6. ravenwoodglass
    Thank you. I get just as much, if not more, than I give though. This forum gives me a reason for all the years of pain and makes it seem like there was a purpose for that pain and all the struggles. We have so many kind and helpful people here. Many that went through the same issues I did. It does help keep us from feeling so alone and hopeless when our doctors...
  7. ravenwoodglass
    I think you may be right about that. I had one day where they did a CT, stress test and pulmonary function test all in the same day. It was a very, very long day.
  8. ravenwoodglass
    If you are going to have an endo DO NOT go gluten free yet. Wait until all testing is finished and then do the diet. You don't have to wait for the results of the endo but you do need to keep eating gluten until the endo is done.
  9. ravenwoodglass
    Sounds like those glands were giving him problems. My little guy never gave a hint that he was having problems with them until one day when one 'blew out' not long before he passed. My vet suggested we bring him in every six months to have them expressed. It is a good thing he gave you the clue that something was wrong in that area although not all dogs do...
  10. ravenwoodglass
    Read the whole label on the sauces. Some that have 'meat' flavoring will list wheat in them or have it in the allergen statement but most are gluten free. As previous poster stated do not go gluten free until all your testing is done. Then no matter what the results give the diet a strict try as false negatives are not uncommon.
  11. ravenwoodglass
    What are you eating? You should be going with whole unprocessed food as much as you possibly can. Make sure you have done what you need to do in your kitchen to keep you safe like a new toaster for gluten free bread and replacing wooden cutting boards and utensils, not sharing butter, nut butters and condiments with gluten eaters. It can take some time to...
  12. ravenwoodglass
    Do let your doctor know that you ODed a bit on the iron before the bloodwork. Too much iron in your system can be dangerous and if he sees very high results with the test it may lead to more testing you don't need if he is not aware of the amount you were taking.
  13. ravenwoodglass
    If you have DH make sure you let them know. My doctor told them not to give me the injection with my test because of it. I agree with the nuts suggestion for something to eat. The test is time consuming but interesting. Bring a good book with you for waiting times.
  14. ravenwoodglass
    I was just happy to get rid of a constant D that even would wake me out of a sound sleep but was surprised when I stopped getting migraines, my off and on depression ended, I was eventually able to walk unaided, my kidney problems resolved and my arthritis that was so bad I couldn't hold a cup, pen or at times walk resolved, I became able to speak normally...
  15. ravenwoodglass
    Being ill for so long taught me patience and gave me more empathy. I never lost hope that the reason for my illness would be found but that last year before diagnosis came close.
  16. ravenwoodglass
  17. ravenwoodglass
  18. ravenwoodglass
    Positive biopsy trumps negative blood test. Did you get copies of the blood test? The reason I ask is some doctors will call a low positive a negative. If you aren't gluten free yet you could get the blood work and maybe the biopsy redone. Or you could just hand a copy of the biopsy results to your new doctor for your record and consider yourself diagnosed...
  19. ravenwoodglass
    You may find these articles to be helpful. Hopefully you will be in the group they are referring to in the snippet that I bolded. It can take time but for quite a few of us things do get better after we have been gluten free for a while. Open Original Shared Link Psychiatric symptoms and coeliac disease "Coeliac disease should be taken into consideration...
  20. ravenwoodglass
    I think that area is usually associated with tension headaches. Have you tried either cold or hot compresses to see if it might help?
  21. ravenwoodglass
    Is she still having GI issues? If not then the person to see might be a neurologist. Although the reality is that if gluten is giving her neuro issues there isn't a whole lot they can do other than telling her to be strict with the diet. They might be able to give her something that would help when she gets the anxiety attacks from CC to use on just an as...
  22. ravenwoodglass
    Yea, if they had only followed me for 2 years they would have said it was permanent as it was about 6 or 7 years before I recovered completely although I was able to walk unaided after a few months. That includes my cognitive function as well as stuff like walking and talking. As far as seeing how it progresses they should talk to the folks like myself that...
  23. ravenwoodglass
    You have to keep in mind that celiac and gluten intolerance both cause antibodies. Those antibodies can attack any organ. There are folks, for example with DH (the skin form of celiac) that do not always have gut damage but they are still considered to be celiac. Endoscopic biopsies are not perfect and do miss a lot of us so we do have to wonder how many...
  24. ravenwoodglass
    One slice of bread or piece of pizza and no symptoms would not firmly rule out celiac or gluten intolerance as the antibodies can take some time to build up. If you are going to challenge gluten you need to eat it 3 to 4 times a day for up to a week or until symptoms appear if they appear sooner. There are also some folks who don't have GI symptoms and are...
  25. ravenwoodglass
    Unless you go back on a full gluten diet for at least 2 to 3 months you can't be tested for celiac. Your rash does sound like the skin form of celiac, DH. Do go to the derm and tell them you want them to look for DH. As mentioned you do need to have an active lesion and the doctor needs to biopsy next to the lesion and the lab needs to be looking for DH....
×
×
  • 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.