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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    I can't give an exact number for all the time I was ill, 15 years to diagnosis after daily D set in but I was celiac since childhood, but the year before I was diagnosed we spent $17,000 (no that is not a typo) on my medical needs, the year after diagnosis we spent about $700. You would think insurance companies would be the ones to give the biggest push...
  2. ravenwoodglass
    First off (((((((((hugs)))))))) it is really hard at first. It is also really important to hang in there. The cause of your panic attacks is not hard to figure out it is in the sentence where you state you are 'almost' gluten free. Gluten is a neurotoxin and as you clear the majority out of your diet your brain is going to be telling you when you injest...
  3. ravenwoodglass
    Do you use the soy milk in a lot of stuff or just mainly on cereal? Many of us will have a issue with soy, it took me a really long time to figure it out and for me the reaction has differences but is so similar that at first it was hard to tell. When you try the rice chex again perhaps you might want to try it with a rice or almond milk instead.
  4. ravenwoodglass
    Gail this sounds like an allergic reaction, have you had any other symptoms like hives? If you are still feeling like you are having trouble breathing you should contact your doctor to be on the safe side.
  5. ravenwoodglass
    You'll make it, your quality of life depends on it. Make sure any soy sauce you use is gluten free, many have wheat. You can still have pasta, there are some good rice pastas out there and also look for Thai Kitchen Rice Noodles in your grocery store. Delmonte Pasta Sauces with the exception of the ones with meat flavoring are all gluten-free. If you get...
  6. ravenwoodglass
    McDonalds does have fact sheets, how accurate they are who knows but here is a link to the info. They have a tab to put the sheets in printer form so you can print it out and look it over and make your choices, if you dare to eat there at all. They should have them in the office so if you go in and ask they should be able to hand you one. Also the managers...
  7. ravenwoodglass
    I was talked into a gluten challenge by my GI after having a very postive outcome with a physican assisted elimination diet. I do not show up on blood work. On the day of my biopsy I was laying on the floor of my bathroom too sick to even make it to the appointment. I got my 'official diagnosis' at that point, but it was at a very high cost. Nothing would...
  8. ravenwoodglass
    I won't touch the ones they make with oat but I have had the Olive and the Chocolate and really liked both of them. I am very sensitive and did not react to either of those. The chocolate is great for spreading with cream cheese.
  9. ravenwoodglass
    While a lot of the damage is not a quick repair what they are looking for is damage to the villi. The villi can repair themselves at a pretty quick rate, and in addition you have 22 ft of small intestine and the damage can be patchy. Biopsies have a high false negative rate for many reasons so to get the best results from it a person should continue to...
  10. ravenwoodglass
    I hope you have a wonderful day. You deserve it.
  11. ravenwoodglass
    It can take awhile for villi to heal and for us to get back to normal. It also can be very hard at first to ferret out all the hidden sources of gluten so many are not as gluten free as they hope to be at first. Since you say you have been reading a lot I am going to assume that you have checked all meds and supplements with the maker. Hopefully you have...
  12. ravenwoodglass
    It may not when it comes from the store but what are the folks adding to their burgers? Many folks don't just throw the meat on the fire they spice it and if having a large group over very well may add bread crumbs to it. My family did this all the time with burgers, we were poor and there was a need to stretch everything. As far as the sausage goes...
  13. ravenwoodglass
    If the amaretto is DiSannoro, I hope I spelled that right it, was gluten-free last time I checked. I do not know about the brandy. Many are fortified with gluten grain alcohol so you will need to check with the maker and with your own tolerance for the answer to that one. Unfortunately there are a couple of issues with alcohol that make it a risk. One...
  14. ravenwoodglass
    I may be an oddball but I get a metalic taste from barley. I do not know how, I do not know why, but when I get CC'd with barley it tastes like I am eating forks for days. The last time I had this was when I was drinking Rice Dream, which looks safe but isn't.
  15. ravenwoodglass
    Your doctor is so wrong about the pain issue. My pain was so overwhelming that words could not describe my last 5 years before I was diagnosed. In the early stages though the 'no pain' did fit, in fact it was one of the worst things about the first 10 years I spent with daily D, yea you read that right 10 years. The D would hit with no warning and because...
  16. ravenwoodglass
    We are here. I was in the end stages of celiac before diagnosis. I am a double DQ9, here in the US my gene tests would have given me a diagnosis of RA, which I did have severe symptoms of. It makes me sad to think that so many RA patients in the US might achieve remission if they recognized DQ9s and their need to be gluten free. I am extremely thankful...
  17. ravenwoodglass

    ARCHIVED Great Dr In Seattle

    ravenwoodglass replied to Aleshia's topic in Doctors

    It's wonderful that you have found someone who you feel comfortable with, that can really be hard. I hope everything goes smoothly and you get a definative answer. I'll be keeping my fingers crossed for you.
  18. ravenwoodglass

    ARCHIVED Great Dr In Seattle

    ravenwoodglass replied to Aleshia's topic in Doctors

    If you have been gluten-free for a year before you can do the endo and you have had a good resolution of your problems a gluten challenge is not IMHO going to be a good idea. If you have a good dietary response and you heal they would have to literally make you extremely ill again with about 3 months of regular gluten injestion for any chance of the biopsies...
  19. ravenwoodglass
    I am so sorry that you are going through so much. Your symptoms do sound much like celiac. Hopefully your blood panel will show a positve result but do be aware that there can be a false negative, (30% of us are negative on blood work) and don't lose hope that you may have found your answer if yours is negative. The itching could be a celiac related skin...
  20. ravenwoodglass
    What brand of spice was this? McCormack spices are a brand that you can trust. In their spices that are single ingredient there is no gluten risk. Not all spice brands are safe. Beef can be really hard to digest as many have mentioned. You also may not be doing well with dairy right now, many of us react to it until healed. If you can find it locally...
  21. ravenwoodglass
    Be really careful if you decide to use Vitamin E, check what it is derived from as it will be either soy or wheat unless it is chemically formed for which will have D- before the tocepheral. Using vitamin E from wheat germ oil could result in a reaction. Polysporin is for sure gluten-free and does not have any added ingredients that we would react to. ...
  22. ravenwoodglass
    Just one additional note on the inks, I have DH and have had it since childhood. I am virtually positive that all the inks that were used on me were safe mainly because if they weren't I would have had a real mess from the resulting blisters. DO NOT take this to mean I am saying all inks are safe, have your artist check them to be sure. If you have DH...
  23. ravenwoodglass
    I recently got a celiac tag for my key ring off ebay. On the back I taped a list of what I need to avoid and I also carry a tag for my pennicyln allergy. Having been made very ill from reactions to even routine testing preperations prescribed by my doctor and also having DH with an allergy to iodine I think it is important if I am unconsious or with my...
  24. ravenwoodglass
    Was that a sugar free gum by any chance? Sugar alcohols are sometimes gluten derived and are commonly used in many gums. There also are some folks who will react to sugar alcohols no matter what the source is. Also not all gums are gluten-free, some use dextrose from wheat and some will use a gluten source to powder the lines and the gum. You need to...
  25. ravenwoodglass
    "However I am dealing with mouth sores, dizzyness/lightheadedness ( I am guessing this issue is caused by GLTUEN ) Can gluten cause brain issues, as in vision issues, chronic dizzyness/lightheadedness.. panic/anxiety attacks, motion sickness.. the list is endless..?" Yes celiac can cause the neuro issues you describe and many more. They can also be present...
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