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
    Check back with Medicaid. They will at times make coverage retroactive and they should cover the appointment. If you have not yet gotten a card call the office and find out why. There are sometimes different levels of coverage and if your insurance has dropped her that would qualify as an emergency need and may get the card or at least the coverage available...
  2. ravenwoodglass
    Have you talked to your doctor about this? If you have an ulcer your doctor should have already told you that it is not something you should be taking. The following link has some good info on this med and the precautions. Open Original Shared Link "Patients taking ibuprofen should be cautioned to report to their physician signs or symptoms of gastrointestinal...
  3. ravenwoodglass
    Those sores are no fun. I have to agree with the previous post. I also get incredible itching from soy. GRRRRRRR that really complicates the shampoo and conditioner issue. I also avoid any that have vitamin E, that is always a problem for me. I have had some success with castile shampoo and for conditioning I many times will use a cocoa butter with jojoba...
  4. ravenwoodglass
    First you have a good doctor. If that doctor is 90% sure after you tell him the result of your gluten challenge that will go up to 100%. Dietary exclusion and challenge really are valid forms of diagnosis and it sounds like your doctor knows this. I am willing to bet that he has already noted it in your chart. He may back you up on the need for testing...
  5. ravenwoodglass
    It does sound like DH. And yes DH can change in presentation. When I was your DD's age I looked like I was covered in poison ivy 12 months out of the year. The only times I didn't have oozing sores was for a month or so during and after a heavy dose of prednisone. By my teen years it was only showing up on the inside of my joints at the elbows and knees...
  6. ravenwoodglass
    If your doctor saw changes suggestive of celiac during the endo I would want to know why he didn't do the biopsies he needed while he was in there. Perhaps he wants another payment for another biopsy? Has he done any of the blood testing? Although blood tests are not conclusive if negative, they are when they are positive, even a low positive. With the...
  7. ravenwoodglass
    Your doctor certainly didn't do you any favors. I can't write the words I want to use to describe this guy. You are celiac. Your doctor biopsied you and found that you were in the early stages. Instead of telling you to stop eating gluten and giving you a diagnosis this guy wanted you to be in the end stages of the disease before he would diagnose. I...
  8. ravenwoodglass
    You say your celiac test was not conclusive, does that mean it was a low positive? Even a low postive is a positive. Have you eliminated dairy? That is often required in the beginning. Have you checked your personal care items? Things like shampoos, lotions, makeup etc can all be a problem. Are you still consuming gluten grain alcohol? If so stop until...
  9. ravenwoodglass
    "Gastro: I am really impressed with the gastro doc's I saw, they said "You are definitely Celiac" we need more labs, liver function w/reflex, the fat-soluble vitamins, the DEXA Scan, and the Endoscopy, and "I want you to stop eating gluten right now" " It sounds like these doctors have given you a conclusive diagnosis. It also sounds like they realize...
  10. ravenwoodglass
    What you are possibly dealing with is an intolerance not an allergy. With an intolerance our bodies build antibodies to the offending substance and that is what does the damage. It is much more likely, and I know you are really not going to want to hear this, that you are having problems right now with both. There has been quite a bit of research on the...
  11. ravenwoodglass
    This sounds like a true allergy to something. You really need to get this evaluated by an allergist. This type of reaction can become very serious with no warning. Please get an appointment with an allergist.
  12. ravenwoodglass
    I agree completely with this. In my own family we have members that tested only one point into the positive range and the doctors said the result wasn't high enough to diagnose. But they went gluten-free anyway. The difference in the way they felt and the resolution of problems not even thought to be related to celiac at the time was very postive. The...
  13. ravenwoodglass
    You should go to the doctor and tell him your concerns. Ask him for a celiac panel. You really should get tested before you start doing the diet. There are a couple of really good reasons to test first. Most important is that to know for sure the doctor will want you to go back on gluten for testing. This can make us very ill if we have already gone...
  14. ravenwoodglass
    You may be able to avoid even seeing the GI specialist. Get to a dermatologist while that rash is active. Tell him that you are being evalutated for celiac and that you think the rash may be DH. He can do a biopsy, make sure he is biopsying beside the lesion not on it. A postive diagnosis of DH is a diagnosis of celiac. No furthur testing would be needed...
  15. ravenwoodglass
    You can get stuff from a supermarket but you do need to read the ingredients and as mentioned look for the words wheat, rye, barley or oats. You might find these links helpful- https://www.celiac.com/articles/182/1/Unsaf...ents/Page1.html and also: Open Original Shared Link Give them both a good look over and that should help make some...
  16. ravenwoodglass
    At least he called. I hope he apologized.
  17. ravenwoodglass
    You have gotten a lot of good advice. The diet is hard at first for everyone. It can be really frustrating. You will get the hang of it. Be sure to check out the gluten free store here that can be visited by going to the home page. That will give you a good idea of the types of gluten free stuff that is already available. Do you live in the US?...
  18. ravenwoodglass
    I agree completely that both those doctors should be fired. Make sure you get complete sets of your records from them including test results and doctors notes. You have a legal right to them and it is a good idea to keep those if you are not already. Don't worry about the pain meds knocking you out if you can sleep then do, that will help you to heal faster...
  19. ravenwoodglass
    Welcome, first take a deep breath and hugs. You are in the right place from the sounds of it. When they did the blood work did they do a celiac panel? Check. If not get one done while you are still eating gluten. It will be a false negative if you are on the diet. You could consider Enterolab testing if you are already gluten-free. They can test for...
  20. ravenwoodglass
    Yes I am sorry that I didn't make that clear. I noticed that you have been gluten-free for 2 years. Do you have a 'formal' diagnosis or a doctor who recognizes the improvement in your health gluten free? With celiac being so strongly genetic that might be enough to get a doctor to agree that a trial of the diet is in order. That would get someone on...
  21. ravenwoodglass
    I would suggest going with clear soda's, water and for sure gluten-free juices. If you are early on in the diet your system may just not like the ingredients in the soda itself. It is rather caustic. I do tend to have issues with caramel coloring, they seem gluten related but many will say they are gluten-free even if the caramel is derived from barley...
  22. ravenwoodglass
    Do they stone grind any other flours at that company? I would call the company and ask if it is ground in a dedicated gluten-free facility. Did you purchase it in a bulk items dept out of a bin? If so scoops may have been shared between gluten and nongluten flours. You may be reacting to CC not to the rice flour itself.
  23. ravenwoodglass
    I am glad they are getting her in quickly. Do INSIST that they do an endo and biopsies also. I would be tempted to google and print out information on the freqency of false negatives for blood testing and bring it with me just in case the doctor balks. Up to 30% of us have false negatives so it is not out of the realm of possibility. After the testing...
  24. ravenwoodglass
    In addition to the advice already given, are you going to make this in your kitchen at home? If yes is that kitchen gluten free? If not you will have to be VERY careful when you make this or any other gluten-free item for her. Do NOT use a bread maker used for wheat based breads. Use a very clean or new baking pan or line one with parchment or tin foil...
  25. ravenwoodglass
    Hello and welcome. You sure are right about Asperger's not making you dumb. Most are smarter than most of the people around them. You are very smart to have done enough research to know that gluten is possibly a cause for the problems you have with concentration and your stomach pain and gas. The concentration issue we usally call 'brain fog...
×
×
  • 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.