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ravenwoodglass

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by ravenwoodglass

  1. ravenwoodglass
    Happened upon this site. Thought it might be useful. All products a certified gluten free. Some can be shipped by the makers company if needed or they can't be found locally. I haven't checked it out throughly but looks like a good site. https://glutenproject.com/
  2. ravenwoodglass
    Have you called your doctor? If not you should. I also had a severe reaction to the gluten challenge so I know how much pain you are in as do many others here. You can decrease the amount of gluten you are taking in your system although that may not help. Just the shredded wheat, a couple biscuits or a couple slices of bread should be enough. Some find...
  3. ravenwoodglass
    You do sound like you could be one of us. Idealy you need to be diagnosed. There are blood tests for celiac that you can order yourself and have drawn at a local lab and then sent to your doctor. It is important to have a diagnosis if you are ever hospitalized and to get needed testing for vitamin and mineral levels. You may find some of your other diagnoses...
  4. ravenwoodglass
    I spoke with someone today who just came back from there. You may want to contact the hotel you will be staying at, it you are staying on one, and ask about stores near by. You may not be able to find much in the way of gluten free baked goods but the hotel staff should know. She said a great deal of the food is rice based so a lot may be naturally gluten...
  5. ravenwoodglass
    You do sound like one of us. How long have you been back on gluten and were you fully gluten free on the paleo and AIP diets? I ask because if you were gluten free you should be back on gluten for up to 12 weeks before your blood tests although an endoscopy could be done sooner. Be sure to have the doctor also do a full CBC along with vitamin and mineral...
  6. ravenwoodglass
    If she seems to do akay with dairy then keep it in her diet. If issues become clear then drop dairy for a couple weeks and then add in dairy that is lactose free, like the butter and parm cheese Squirmy mentioned, yogurt and hard cheeses like cheddar. Do see about talking to them at school about the need to keep her safe. Sculpy (I know I didn't spell...
  7. ravenwoodglass
    If expense is a hindrence with getting the blood work go to the hospital's billing dept with which your doctor is associated. They may have a sliding fee scale or even forgive costs for lab work etc that is done there. The programs are income dependent but it is worth a try if you have no insurance or high copays. You may also qualify for Medicaid and you...
  8. ravenwoodglass
    I wonder if Udi's knows how many customers they are losing. I have been a loyal Udi's consumer for years and now have to search for a replacement. I wonder if a bigger company has bought them out? That happened with a favorite lotion and soap I loved. There is an old saying 'if it ain't broke don't fix it' I wish companies would think of that with our prodcts...
  9. ravenwoodglass
    Hi Ellie, I don't know about the similac but the celiac was caused by your genes. What triggered the celiac could have been the stress of the divorce, the mono could have triggered it or a physical or emotional stress you may have forgotten about. Consuming gluten doesn't cause celiac a severe stressor usually triggers it in those that have the genetic propensitiy...
  10. ravenwoodglass
    I have issues with it also. In my case it is the addition of the sorghum. I should have read the label. My bad. Unfortunately all the breads I looked at as an alternative have either that or soy flour. Not sure what I am going to do for my daily PB&Js now.
  11. ravenwoodglass
    You are right to be a bit paranoid about cross contamination. I don't have much time but will say it is going to be okay. Read the Newbie 101 thread at the top of the Coping section. It has a lot of info that will be useful to you. Do be sure to have all her siblings tested as well as you parents. Even if they don't have symptoms, or don't seem to be having...
  12. ravenwoodglass
    There are more celiac panel blood tests for a complete panel. If possible you should have a complete panel run. There are celiacs that have positive biopsies even without any obvious GI symptoms. As to the gene tests there are celiacs that don't carry one of those two genes. Those are the most common but there are others. I am one of those odd balls. ...
  13. ravenwoodglass
    Yes get the endo done. Make sure you keep eating gluten until after the scope is done. What tests did they do of the celiac panel? Some doctors don't run a full panel and in addition you don't need to be positive on all the tests to be celiac. There are folks that are false negative on the blood tests and still have lots of damage on the biopsies. Make...
  14. ravenwoodglass
    Your pharmacist is the best place to get the answer. They will know which company they get the generic forms from and can either call for you or give you the makers name so you can contact them yourself. Make sure that it is noted in their records that you are celiac so they will check before filling any scripts. Do remind them though with each visit. Most...
  15. ravenwoodglass
    Welcome. It sounds like your son has a lot of the issues my son did at that age. He went from the 65th percentile to the -10 by a year. Unfortunately the doctors never thought to test for celiac until he was in his late teens. It is my understanding that children can show a false negative on tests even more often than adults. Do give him a good strict try...
  16. ravenwoodglass
    This drug has a number of side effects. The most common being " The most commonly reported side-effects of Laxido Powder are diarrhea, abdominal pain, numbness or tingling in the skin, gas, feeling sick, and vomiting. " Here is a link to the much longer list of possible side effects, some of which are serious. https://www.tabletwise.com/uk...
  17. ravenwoodglass
    Welcome sorry you are still suffering. have they rerun your celiac panel to see if your antibodies have gone down? You mention eating 'anything with a gluten free label' you may want to go with more whole unprocessed foods until you are better healed. If you are consuming item with oats you should drop those items for a bit. Some celiacs don't tolerate oats...
  18. ravenwoodglass
    There is no reason not to have a sweet now and then. I enjoy Hersey's dark chocolate chips when a chocolate craving hits. Do go with mostly whole food but having an occasional gluten-free cookie, cake or piece of candy is okay. You may want to stay away from dairy for a bit but once healed if you want an occasional bowl of gluten-free ice cream go for it...
  19. ravenwoodglass
    Did they do a blood test? What were the results? Your doctor is either not very knowledgeable about celiac testing or your symptoms are very severe and he wanted to give you relief as soon as possible. It is possible that you could have a positive endo as you will not have been gluten free for even a week at the time of the endo but it is also possible...
  20. ravenwoodglass
    Unless you have been glutening yourself accidentally (possible if you are still having symptoms) you are correct that you would need to do a challenge for diagnosis. Have they done a celiac panel? That is the first step. If they did and that came out positive then it is possible that you could have a positive biopsy. You may want to read over the 'Newbie...
  21. ravenwoodglass
    Went to the link and saw this " All flavors have zero sugar, 1 gram of carbs, 90 calories and are crafted to remove gluten." I avoid anything with the line I bolded. In summer on the rare times I drink I like a good potao vodka with lemonaide or cranberry juice, clear rum and coke, or a crisp Woodchuck cider. Kahlua and milk or in hot chocolate...
  22. ravenwoodglass
    I do hope your doctor was checking your liver function frequently while you were on the dapsone. I agree with previous poster that you have never been gluten free. If your doctor didn't tell you to go strictly gluten free the doctor was not only an idiot but also very negligent. You need a new doctor. All the while you were simply taking the drug to control...
  23. ravenwoodglass
    Welcome. When the doctor did the biopsies were they taken from intact skin next to an active lesion not of the lesion itself? Taking the biopsy from the lesion will cause a false negative as can being on steroids. I don't know how long it would be before the false negative from steroids would wear off. Did any of the doctors run a full celiac panel? If not...
  24. ravenwoodglass
    Unfortunately it is not just food you need to be concerned with at school. With kids arts and crafts supplies can be an issue. Playdoh and stuff like glues and paints can also be a concern. If you aren't already you may want to get her some gloves to wear during art time or send for sure gluten free craft supplies that she can use for those classes.
  25. ravenwoodglass
    All my family members got tested but not until six months after I was diagnosed. They didn't really believe my diagnosis at first I think because I had so many before my celiac was discovered. After watching my healing I was able to convince them to test. Both kids tested posiive, one with blood and one with both blood and biopsy. My ex even tested and...
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