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ravenwoodglass

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Everything posted by ravenwoodglass

  1. ravenwoodglass
    Have you tried putting on gloves when you are cleaning them? My job has me working around other peoples crumbs all day and I have been okay cleaning even the biggest messes. I use a non-latex unpowdered gloves like you would use for medical purposes. It helps me be safe perhaps it would also help you. Another thing you may want to try is giving the kids...
  2. ravenwoodglass
    Cool compresses may help a bit. Hot baths or showers used to really aggravate my itchy skin so go with warm or cool ones to see if it helps. Keep well hydrated both inside and out. Be sure to check and make sure any lotions you use are gluten free. Shea butter, olive or coconut oil may help. Since you say this is not DH, no blisters etc. I would not...
  3. ravenwoodglass
    It sounds like you have a good doctor. That helps a great deal. It can be difficult if you travel a great deal but if you can get a hotel room with a kitchenette that is helpful When I travel I carry a hot plate with me, a pot, some utensils and a cheap toaster. I do make sure that I put the cooled hotplate away if I am having maid service as some hotels...
  4. ravenwoodglass
    Sorry you folks are going through this. Do read the Newbie 101 thread at the top of the Coping section to make sure you are not missing anything that needs to be done to keep him safe. Unfortunately being gluten free involves much more than just picking gluten free foodss. We have to be careful of how food is prepared, have our loved ones brush their teeth...
  5. ravenwoodglass
    The endoscopy is really a pretty easy procedure. You don't have to do the nasty prep that is done with scoping the other end. You go in, they put you to sleep for a very short time and then you go home. If you really don't desire one then talk to your doctor. You have positive blood work and sometimes doctors will give an official diagnosis with that...
  6. ravenwoodglass
    Celiac testing is quite specific and conclusive with the exceptuion of the TTG which can, as I understand it, at times be elevated due to other causes. The whole panel does not need to be positive to be celiac. Some folks are only positive on one test. Hopefully your doctor also did a Total IGA as if you are deficient that can cause a false negative. Having...
  7. ravenwoodglass
    While not considered in any way diagnostic by most doctors I think there may be some significance to the Enterolab result. If you feel the need for a doctors diagnosis (and there are really good reasons to get one) you should get to the doctor and get a full celiac panel run. Do make sure that they do the newest tests. Keep in mind that only one of those...
  8. ravenwoodglass
    Where is he on the charts in relation to where he was at birth? If he, for example, started out in the 60th percentile and is now in the 10th that would be a concern. It isn't going to hurt to have him screened for celiac with a blood test if he starts to show symptoms or has lost a good bit of ground on the growth chart percentiles. That is going...
  9. ravenwoodglass
    I had to withdraw 3 credit hours short of my degrees (I was in a duel degree program) because of celiac. Not because I had it but because I was undiagnosed at the time. I also thought of going the online route but decided not to because I learn better with interaction and gave myself time to heal before returning to finish up. Your fall semester is...
  10. ravenwoodglass
    Not sure when you were tested in relation to the steriods but steriods may give you a false negative on testing. It you are celiac you may show up positive to a lot of stuff on the allergy testing that may resolve on the diet. I tested positive to 98 out of 99 things I was prick tested for by my allergist. He later explained that my immune system was...
  11. ravenwoodglass
    Because your symptoms were so severe you should call your doctor and ask if you should stay on gluten until the biopsy. Normally you are advised to keep eating at least a slice or two of bread a day until all testing is done. It sounds like you must have had positive blood work so you do have celiac even if your biopsies should turn out to be negative. Go...
  12. ravenwoodglass
    If the villi took 2 years to recover then folks who had been gluten free for a couple months would not need to do a gluten challenge before a biopsy. The villi actually regrow in a pretty short time but it does take time for us to heal from the effects of the antibodies. There are folks who just don't tolerate dairy whether celiac or not and you may be one...
  13. ravenwoodglass
    I would have liked to have had a support group in my area. I went over 45 years undiagnosed. The last 15 were hell on earth and left me unable to travel the hour or so I would have had to go to meet with others like myself. You may want to check with your local hospital and see if you can get one going.
  14. ravenwoodglass
    I agree you should think about dropping the granola if it contains oats. Maybe look for one that doesn't have oats or oat fiber if you feel you must have granola. Have you tried Cream of Buckwheat? That is high in easily digestable protein and quite easy on the tummy. Have you tried Hemp milk? You could use hemp milk combined with a hemp protein powder...
  15. ravenwoodglass
    Gut reactions can be delayed so you may find that reaction shows up at some point in the next 72 hours. Do tell your GI about your going gluten free before the biopsy and how long it was. Even if you should have a negative biopsy that is not going to negate the positive blood work. Just go back to the diet strictly after the procedure is done.
  16. ravenwoodglass
    With positive blood work she has celiac. If the gene testing is going to be a strain on your budget personally I would forgo it. There is also the VERY rare chance that she could be in the small percentage of celiacs that don't carry one of the most common associated genes.
  17. ravenwoodglass
    You should definately make sure that stuff that goes on your lips or hands is gluten free. Personally I don't like gluten in any of my personal care products and thankfully stuff like wheat protein, wheat germ oil and oats are becoming easier to avoid. They seem to be in less products as time goes by.
  18. ravenwoodglass
    You could do a gluten free Christmas dinner at home on Christmas Eve and then load up a plate (with a microwveable cover) with your gluten free turkey, stuffing, sweet potatoes etc and pop it in their microwave as all are sitting down to eat. You could even bring a small plate of cheese and crackers for yourself and a larger one to share before dinner. And...
  19. ravenwoodglass
    Since your doctor didn't do any biopsies of your small intestine there is no way to know if you do or do not have celiac. Do post your test results as we can help interpret them. If you don't plan on any further testing for celiac you can do a strict trial of the diet. If you are going to want more testing (second opinion?) don't drop gluten yet.
  20. ravenwoodglass
    (((((((((((((((((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))))))))))) Welcome to the board. We understand and many have been down the same long road. Have you had your vitamin and mineral panels run? It would be a good idea if you can. Sometimes some sublingual B12 can help with the brain fog. It is worth a try if you don't take...
  21. ravenwoodglass
    What I did to get back to a good weight was I ate a bag of Wylde pretzels a day in addition to my meals and snacks. The bag was about 1100 calories for a not real big bag. I munched constantly all day long. The pretzels are dairy and soy free which was something I needed also. Maybe you could find something like that to add to what you are now eating with...
  22. ravenwoodglass
    So sorry you are having such a very hard time. Have you been back to your GI for retesting to check your antibody levels and the state of your villi? If not it would be a good idea to get that retesting done. While it is quite rare there is the possiblility of refractory celiac. Hopefully that is not the what is going on but if it is the doctor may be able...
  23. ravenwoodglass
    There are folks that will have nasty reactions to large, or at times very small (case for me) artificial sweeteners. They can also be quite addictive. It would be a really good idea to cut down your intake, or ideally stop the diet soda altogether. It could be contributing to your need for hospitalizations. Or even be the root cause for them.
  24. ravenwoodglass
    Karen, welcome to the board. With everything you have done it is highly unlikely there is gluten still in that room that is causing your issues. Please read the Newbie 101 thread at the top of the Coping page. It will help you pinpoint the cause of your continued issues. How long have you been diagnosed? What are the symptoms you are getting? There could...
  25. ravenwoodglass
    Will doctor number 1 give you an official diagnosis? It sounds like your blood work was high enough that there is no doubt in that doctors mind. You are also responding well to the diet. If you could get the biopsy in a week or so then personally I would go for it. Since you can't have one until the end of January you would have two choices, stay on gluten...
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