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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Please call the GI doctors office and ask for either a call back from the doctor or to speak with a nurse. You do need to be consuming gluten for any celiac related testing to be accurate. You need to ask their advice because of the reaction to allergy testing. They may want to see copies of that testing before you do a challenge. Doing a challenge...
  2. ravenwoodglass
    You should follow up with your GI doctor. That test is clearly positive and it is celiac specific. Your doctor should not have acted like that when you asked to be tested. You may want to find a more celiac savvy GP. If you have been mostly gluten free you may need to go back on a regular gluten diet for a bit before you get more celiac testing.
  3. 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.
  4. ravenwoodglass
    I think a lot of us can identify with his symptoms. The pattern you are seeing on his skin is likely something called livedo reticularis. In myself it seems to be related to inflammation. Before diagnosis the only thing that would alleviate this for me was an acupuncture session. it would be gone for a couple hours then reappear. I think it is associated...
  5. ravenwoodglass
    Celiac is genetic. That is why it is advised that all first degree relatives of folks diagnosed get tested before they go gluten free. If you have other family members who haven't been tested it would be best to have them blood tested before they go gluten free. You may want to consider going back to eating gluten for a bit so you can be tested.
  6. ravenwoodglass
    Welcome to the board. It is too bad your 'doctor' didn't test you for celiac before telling you to go gluten free. Since he was neglectful in that respect chances are he didn't tell you all you need to do to keep yourself safe IF you have celiac. Since you have children and celiac is hereditary you should consider going back to eating gluten and getting...
  7. ravenwoodglass
    I am very sensitive and have DH that is activated with even tiny amounts of gluten. I eat a lot of processed food and have since diagnosis. I was close to death at diagnosis and I healed. It takes time and it is best to eat as much whole food as possible. I agree with Cyclinglady that this is nothing to freak out about if you are healing keep doing what you...
  8. ravenwoodglass
    From what I understand if you are in the US if it just says 'vinegar' and not 'distilled vinegar' it should be apple cider vinegar.
  9. ravenwoodglass
    Can you give her some magnesium rich foods instead of the supplement? Foods are always the best way to get nutrients. Here is a link to a list Open Original Shared Link
  10. ravenwoodglass
    In addition to the great advice you have already gotten you may want to give a short itinerary of the cities and countries you plan to visit one the International thread. We have members from all over the world so you may be able to get some advice about places you can eat out that would be safe.
  11. ravenwoodglass
    The one make by Sandoz is gluten free. Be aware that some doctors will prescribe a higher dose than needed. If you find that the prescribed dose makes you very sleepy ask the doctor if you can cut the dose in half. It is a highly addictive drug so hopefully your doctor is only having you take it when needed.
  12. ravenwoodglass
    Welcome to the board. Never heard of this test. If you suspect you have celiac keep eating gluten and make an appointment with your doctor.
  13. ravenwoodglass
    Chances are your doctor ran blood tests for your liver function. That is usually done pretty routinely. It is not uncommon for someone to be negative and then later to have a positive test. Celiac can develop at any time in a persons life. A fa;se negative is much, much more common than a false positive when it comes to celiac testing. If you are going...
  14. ravenwoodglass
    Many will be. Try going to the website of your favorite brand and look in the FAQs or Health and Wellness section.
  15. ravenwoodglass
    My guess, and it is just a guess, is that your body may be 'diverting' it's energy to the digestive process. If you are wondering about Celiac it wouldn't hurt to get tested. I had 'the most extensive diverticuli' my GI had ever seen prediagnosis. Interestingly enough when I had a scope done 5 years after diagnosis I had none.
  16. ravenwoodglass
    From their website: "All of Sabra’s products meet broad standards of gluten free content of < 20 ppm." I usually get the Wegman's brand but have also had the Sabra and not had an issue. It is really easy to make at home. If you eat a lot of it making it turns out to be less expensive.
  17. ravenwoodglass
    Can you get a copy of your biopsy report? The remark that it is 'inconclusive' makes me wonder if your doctor is one who doesn't diagnose unless villi are totally destroyed. Perhaps a second opinion from another doctor might be a good idea. Ask also about the possibility of a formal diagnosis if the gluten free diet brings those numbers down and gives symptom...
  18. ravenwoodglass
    If you have positive antibodies you very likely have celiac. This is especially the case since you also have low B12. Have they checked your other vitamin and mineral levels? It might be something to ask for them to do if they haven't already. It is good the doctor did the colonoscopy and has ruled out stuff like chrons. Did they set you up with an appointment...
  19. ravenwoodglass
    Celiac is an autoimmune disease not just a gut disorder. If one doubts that they have only to look at folks with DH or Ataxia that don't (yet) have GI presentations. The antibodies start to be formed when gluten comes into contact with mucous membranes. There was research being done trying to find a way to diagnose us without having to do a gluten challenge...
  20. ravenwoodglass
    Perhaps the doctor that told you to continue on the diet might give you the official diagnosis so he can get the accomodations he will need to have in school?
  21. ravenwoodglass
    You mention being able to just tolerate a small bowl of cereal. What cereals are you eating? Do they contain oats? Even gluten free certified ones? There are some celiac folks who don't tolerate oats even if they are certified as gluten free. On the off chance you may be eating them you may want to drop them for a bit and see if that helps. I hope...
  22. ravenwoodglass
    If you were already gluten free when the blood work was done then the results would be a false negative. It does take time to heal so hard as it is you have to be patient. Do try dropping the dairy for a while and read the Newbie 101 thread at the top of the Coping section. It will have a lot of good info for you. I hope you are feeling better soon.
  23. 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...
  24. ravenwoodglass
    My post was not directed at you personally but an expression of my own frustration in the way that many medical professionals look for and at the diagnosis of celiac. Your posting research info is very much appretiated. I was misdiagnosed for many long and painful years and am thankful that the diagnosis process is becoming better. It does still have a...
  25. ravenwoodglass
    I do hope you are gluten free or will go gluten free. If you have DH you have celiac. Dapsone is quite toxic so I hope your doctors are at least checking your liver function frequently since celiac can also impact the liver. I had DH for a long time along with neuro impact before gut symptoms became obvious. A lot of damage was done because of the delay in...
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