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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    You could ask your doctor to redo the lumbar puncture. If you don't have the debris found with MS that is pretty conclusive that what you are dealing with is not MS. I was thought to have MS until my neuro did the puncture. Then the clueless guy told me that the brain lesions I had meant nothing and I just wanted to be sick! I also had false negative blood...
  2. ravenwoodglass
    Your right I did miss that. What OP is describing sounds like depression symptoms. Celiac can cause depression episodes, it does in myself and have heard of others that have that brain impact. There could of course be other causes. If the celiac has impacted his mood it may take a bit of time for it to resolve. Has the doctor checked his vitamin levels?...
  3. ravenwoodglass
    Welcome to the board. Some of us will suffer through a withdrawl when we first go gluten free. If that is what is going on it will pass. It also takes some time to heal and he has only been gluten free for a week so hang in there. Do be sure to check out the 'celiac 101' thread as it can be tricky at first when we go gluten free as the gluten free lifestyle...
  4. ravenwoodglass
    Can you go to your GP and get a celiac panel? The IGE test will not show celiac, that is an allergy test and celiac isn't an allergy. It looks like you only had one celiac test done and the one that was done is not one of the best ones for diagnosing us. It looks like your allergist is not really knowledgable about celiac testing.
  5. ravenwoodglass
    How did your body respond to being gluten free and how has it responded to the challenge? IMHO that is the most important thing to which you should be paying attention. While it can be helpful to get a firm diagnosis if the diet is helping you should stick with it after all your testing is finished no matter what the results.
  6. ravenwoodglass
    Not all celiacs have DQ1 or DQ2. I myself am a firmly diagnosed celiac who is a double DQ9 and was close to death by the time I was diagnosed. I have a family member who was diagnosed by both blood test and biopsy who recovered on the diet but then was gene tested a few years later and told they were not celiac because they also didn't have DQ2 or DQ8...
  7. ravenwoodglass
    Celiac is an antibody reaction so it is not surprising when it takes up to a week to react after resuming eating gluten. Being woken up by digestive issues in the middle of the night is also a sign. At least according to my GI doctor. If you were gluten free for a year it can take some time for the antibodies to build up to levels where they can give a positive...
  8. ravenwoodglass
    Welcome to the board. It would be a good idea to ask your doctor to do a celiac panel before you go gluten free. If you are celiac and later on decide you want to be tested if you are already gluten free you would need to do a challenge. If someone needs the diet that challenge can be pretty miserable. If you are celiac you are producing antibodies as a...
  9. ravenwoodglass
    Well at least you won't have to worry about someone grabbing one of your dedicated gluten-free supplies and contaminating them. Life is too short to let stuff like this ruin your holiday with your family. Now is the time to be thankful for the loved ones you have. Warts and all. Try not to let this ruin your festivities.
  10. ravenwoodglass
    The reason I gave a reply previously with info on another gene that is associated with celiac was because of this part of your post. While gene testing can be a part of the diagnosis process just because someone does or doesn't have one of the two most common genes does not mean someone will or will not develp celiac. Even if you older daughter doesn't show...
  11. ravenwoodglass
    We all need to keep in mind that genetic research is really in it's infancy. There is a lot we don't know. Until they start doing genetic testing on every celiac diagnosed there will remain much to learn. I am a double DQ9 firmly diagnosed celiac. I am not alone. I don't have much time so only can provide one link. Here it is. Open Original Shared Link...
  12. ravenwoodglass
    It wouldn't hurt for a bit to drop dairy and then when you have been feeling better add it back in and watch for symptoms.
  13. ravenwoodglass
    What you describe sounds like gluten ataxia. You need to be very strict and do all you can to avoid any cross contamination but it can still take a while to resolve fully. Your B12 levels are still very low. They should be over 500. If you are not taking a sublingual B12 you should do so as that may help the nerves heal faster. Welcome to the board and I...
  14. ravenwoodglass
    Call your regular doctor in the morning and ask for a slip for the blood work Once the blood is drawn since you already had the endo you can start the diet. You may feel better even before you get the results back. You also may find the gastritis is gluten related and heals once you are gluten free.
  15. ravenwoodglass
    Did the neuro find anything called UBOs on the MRI? Not all neuros are aware that these are often seen in celiacs that have brain impact. Mine found them and thought MS but when the spinal tap didn't show the debris found with MS he also threw up his hands and dismissed me. Also have they checked your B12 levels? If so compare those results with previous...
  16. ravenwoodglass
    I hope you hear from the office soon and they have some answers. It sounds like it would be pretty uncomfortable.
  17. ravenwoodglass
    It may not be the case for you but after I had been gluten free for a while I discovered that my severe joint pain was due to a soy intolerance. Even a little bit will have me aching for days. If you haven't already try eliminating soy for a bit to see if it helps.
  18. ravenwoodglass
    Horizontal dents can be caused by an illness having an effect on the growth from what I understand. They may have formed before you were diagnosed and should grow out. I had them in almost all fingernails pre-diagnosis. They did go away. The vertical ridges are still there for me but the dents are gone. Have you seen a dermatologist? They may be more helpful...
  19. ravenwoodglass
    Heinz UK makes a tomato soup that is safe, or was last I had some. I am in the US and it is sold in the 'import' section of some grocery stores. Don't know if it is available where you are.
  20. ravenwoodglass
    This could be gluten related but it could also be something more serious. Call your doctor and talk to a nurse about this and see if you can get your appointment moved up. It may just be gluten related but it could also be signs of a stroke.
  21. ravenwoodglass
    I agree. When my allergist put me on a strict elimination diet I was told to eat the new food 3 times a day for a week before I could add that item in as safe. My gluten reactions usually take about 3 days to appear.
  22. ravenwoodglass
    It may have been a delayed reaction from the Taco Bell that you recently ate. For some of us our reactions can be delayed by days so it isn't always the last thing we ate that we are reacting to.
  23. ravenwoodglass
    Make sure you let your doctor know that D is waking you up at night. Stress that as some doctors only listen to half of what we say. IBS does not wake people up from sleep so that symptom will rule out IBS. From your symptom list I would think you are one of us and as soon as you can get yourself gluten free you should see relief although it can take a bit...
  24. ravenwoodglass
    My DH did clear up completely. It did take awhile and I found I had to be really strict with the diet and I also eliminated iodine. I made sure that all my toiletries and shampoos were gluten free and used a free and clear detergent. The first year or two into the diet a DH outbreak was the first indication that I had been glutened. Within hours of exposure...
  25. ravenwoodglass
    Thanks everyone. The cold water did work on the couch and carpet. So much blood from that little scratch. My house looked like a crime scene and I am still finding blood drops on walls, my kitchen tv etc. LOL Every time she shook her head the blood would start to flow again. Saw some advice on line to use flour and wrap her ear to her head. Of course...
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