Jump to content

Jean'sBrainonGluten

Advanced Members
 View Profile  See their activity

  • Posts

    53

  • Joined

  • Last visited

 Content Type 

Profiles

Forums

Events

Blogs

Latest Celiac Disease News & Research:

Everything posted by Jean'sBrainonGluten

  1. Jean'sBrainonGluten
    I think some of us are so sensitive that if a food is made with even one ingredient that is cross-contaminated we react to it. It's a pain because I used to love Tasty Bites, for example, but I now realize I can't eat their prepackaged things and they were delicious and convenient. I think it's been hard for me to admit I just need to learn to be a much...
  2. Jean'sBrainonGluten
    It seems plausible but most doctors only look at the immediate symptom and whether it cna be cured by a pill, not what might be causing it (not digesting food right). I still have to take supplement of both so you might look for some good pills. For vitamin D I take the D3 form. Good luck!
  3. Jean'sBrainonGluten
    Check the web - There are gluten free versions of beer, pasta and bread - so life as you know it doesn't have to end.
  4. Jean'sBrainonGluten
    Oh just found another article on keeping down costs on the diet. Open Original Shared Link
  5. Jean'sBrainonGluten
    I know you're in withdrawal and that's a tough time - hang in there! Even after a long time gluten free I sometimes get cravings because my family eats gluten stuff. It helps me to keep their stuff out of sight and to be meticulous about cleaning up (crumbs or whatever) and using ventilation so I don't have to smell their stuff. Also, if you're concerned...
  6. Jean'sBrainonGluten
    Here's a link to an article about chelation therapy to remove heavy metal poisons. Open Original Shared Link
  7. Jean'sBrainonGluten
    I have twitching/myoclonus and I'm pretty sure it's because gluten has affected my brain. If you do a search for information about celiac white matter lesions you will see that there are several papers about patients with white matter lesions in their brains and a variety of symptoms that mimic serious neural diseases like epilepsy, MS, and Lou Gehrig's...
  8. Jean'sBrainonGluten
    Hi I was watching a good video on youtube about celiac. It's a recording of a presentation by the William K. Warren Medical Research Center for Celiac Disease. In it the director, Martin F. Kagnoff, M.D., talks about different sensitivities to gluten Celiac - classically the symptoms of intestinal damage and associated diarrhea, nutritional...
  9. Jean'sBrainonGluten
    This is really a judgment call. The key is you - will you believe it if you don't have a lab test confirming it? Will you believe it enough to stand firm on your gluten free diet when you have started to feel better? I didn't and it caused me a LOT of problems because I wasn't precise about cross contamination and occasionally just eating something because...
  10. Jean'sBrainonGluten
    As I understand it the test that you took is quite specific and 95%+ reliable - if you have a positive result you have celiac. A negative result only has a 70% chance of being correct. I think you have it.
  11. Jean'sBrainonGluten
    There are several posts in other parts of the forum from people whose blood work and even biopsy came back normal, but who clearly have gluten sensitivity. Regardless of the test results if you try him on a gluten free diet and it makes him feel better then you should go with how he feels.
  12. Jean'sBrainonGluten
    Chocolate is yummy but I have to limit it or I still get acne. You might look at whether you're getting enough fat or just calories in general?
  13. Jean'sBrainonGluten
    Constipation is almost a separate issue for me. Whether or not I eat gluten I have to take several steps to deal with the constipation or I'm in agony. Every day I try to drink plain ginger tea, eat plain live yogurt, and do some abdominal exercises called Pilates mat. Those things plus drinking plenty of water are essential or I'm inbig trouble. I get...
  14. Jean'sBrainonGluten
    It's important to have the strongest diagnosis you can if possible. I know it's hard to be assertive for yourself but you have to do it. I have posted some photos of my MRI on my facebook page but I can also send them to you. The celiac white matter lesions are what happens to the brain of someone who repeatedly has 'just a little'. If they're okay...
  15. Jean'sBrainonGluten
    They are prescription meds and the dose needs to be verified by repeat thyroid blood tests.
  16. Jean'sBrainonGluten
    You can see a doctor, get tested and receive chelation therapy. That may go faster than just stopping the tuna consumption. Depending on what kind of tuna it was you may also have been getting MSG in broth or flavoring and apparently some msg is made from wheat or just causes reactions in celiacs. If you had the headaches before you might look into...
  17. Jean'sBrainonGluten
    Um, I would be careful about Benadryl - it makes my myoclonus significantly worse. Try a small dose first if you think it seems promising.
  18. Jean'sBrainonGluten
    For me inhaled gluten causes some of those symptoms. You might also check for exposure through the skin via toiletries or makeup.... or like some have said try cutting out other foods and see if you see improvement.
  19. Jean'sBrainonGluten
    You might try a rotation elimination diet or a specific carbohydrate diet and see if you can get some relief. Also you may have gluten antibodies doing stuff in your brain and in that case migraine triggers like onion, cheddar cheese, and mushrooms can trigger big trouble - even stomach trouble that is called abdominal migraine. What I've found is that...
  20. Jean'sBrainonGluten

    ARCHIVED Blood Tests

    Jean'sBrainonGluten replied to MJS's topic in Doctors

    There are blood tests to see if your immune system is being stimulated by gluten exposure. They talk about them in the testing forum but basically they are Antiendomysial antibody (IgA EMA) Antigliadin antibody (AGA-IgA and AGA-IGG) Tissue transglutaminase (tTG-IgA and tTg-IgG) Total serum IgA There's probably a student health clinic of some sort...
  21. Jean'sBrainonGluten
    Hi SirSleepie, I have had myoclonus and symptoms that looked like a brain tumor but when I got a brain scan it showed nonspecific spots. Because I'm over 50 they were classified as microvascular ischemic changes but I'm pretty sure they're celiac white matter lesions. If you do a google search there are several papers on them available for a charge over...
  22. Jean'sBrainonGluten
    I am not sure what you mean by neurogenic celiac. I call what I have neuroceliac because at this point it mostly affects my brain but neurogenic would mean something like it originates in the brain? The doc to go to depends probably on your symptoms and in any case it will likely be hard for them to consider celiac as a cause of neuro symptoms because...
  23. Jean'sBrainonGluten
    Australia actually has a large celiac population so the restaurants and so on might be less challenging than you think, and there are several books and websites that discuss how to travel and stay gluten free. If you have celiac you will feel better and have more energy and focus if you get off gluten. Try to get tested... If you have $329 you can...
  24. Jean'sBrainonGluten
    Your skin reaction could be dermatitis herpetiformis (do a google search). In a way this is good news because if confirmed it means you don't have to make decision about blood tests and an endoscopy. The leg and arm spasms could actually be a sign that gluten antibodies are at work in your brain..... I didn't notice a reaction to wheat until I had...
  25. Jean'sBrainonGluten
    Your blood test results are quite conclusive and specific. I know it's painful to feel awful and not be able to stop eating something you suspect is making you sick. I have to confess that I went gluten free seven years ago after an elimination diet but no formal diagnosis from a doctor because I felt awful. For a couple years I was fairly vigilant but...
×
×
  • 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.