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ravenwoodglass

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

Everything posted by ravenwoodglass

  1. Going on laxatives for that long can make people dependent on them. There are stool softeners that might be better if you feel you want to go with pills. Ask your doctor about them. I agree with dropping all dairy for a bit. she may be sensitive to casien rather than the lactose. That can cause a delayed reaction. Probiotics like those in yogurt can...
  2. Does she consume soy? It may not apply for her but when I consume either soy flour or protein it binds me up for days. You could try also eliminating soy and see if it helps. Prunes or prune juice may also help. They gave it to me in the hospital after I had my son. They wouldn't let me go home till I had a BM and I was on my way home with my baby in just...
  3. Brewer's yeast is a by-product of beer brewing so it is usually contaminated with barely malt. Safest to use something that is for sure gluten free. If you only avoid wheat then it should be fine for you but someone with celiac is best to avoid brewer's yeast. I notice you usually only mention avoiding wheat. If someone is celiac they also need to avoid...
  4. A good stess B should help a bit. Do have your doctor check your iron levels before taking iron supplements as too much is toxic to the liver and in many with celiac the liver is negatively impacted until healed. When the doc checks your iron have them also check your B12 levels and D. Hope you are feeling better soon.
  5. Can you get a copy of your bloodwork and the results and ranges so we can tell what has already been run? We have some folks really knowledgable about lab work that might be able to give some insight or let you know what other tests to have your doctor run. I agree with Ennis that this should be followed up on. When your fingers and toes get purpleish have...
  6. Symptoms can come and go that is not unusual. IMHO you should keep the appointment as scheduled.
  7. Do not eliminate gluten until all celiac related testing is done. Just keep to your usual diet making sure to eat at least a couple slices of bread worth of gluten daily. I was thought to have RA for a time but it did turn out to be gluten. Within a few months gluten free my joint pain was a thing of the past...at least till age caught up with me. You may...
  8. You need to stay on gluten while any celiac related testing is being done. Have they done an MRI? Folks with gluten ataxia will have lesions called 'UBO's" or unidentified bright objects. They are similiar to the lesions found in MS. If found they will sometimes do a spinal tap to rule out MS. If you haven't already do get a celiac panel run along with your...
  9. I use Velveta (sp?) rather than taking a chance on a powdered mix. Just brown the beef and cook the pasta then add either the velveta that comes in a box or the packets. I always liked the cheesy to be extra cheesy and using the velveta I can make it as cheesy as I like.
  10. I can't answer about the HLA tests but since you did have villi destruction have you tried the diet strictly for a while? Some folks don't show up positive on blood tests and there are some more rare genes that are also associated with celiac. I can't say for certain that one of the ones you are positive for is one of them or not so I will leave that to someone...
  11. Welcome, what does it say after "see note" ? I only see results for a couple of the tests. Maybe the rest aren't in yet?
  12. I haven't had a doctor do a panel on me since I was diagnosed. IMHO your doctor would be better off checking your vitamin levels and for anemia, liver function etc. If your still having D then stool testing to make sure you didn't get food poisoning or something along those lines would be in order. There really isn't anything they can do to help us get over...
  13. I can only talk from my own experience but my allergies were related. Before I was diagnosed I saw an allergist who did skin prick testing and then put me on an elimination diet. The skin testing was for 99 different allergens. The only thing I didn't react to was beech trees. After I was diagnosed celiac he said that (and my symptoms) made him think celiac...
  14. Welcome. The biopsies they are taking are going to be of your small intestine lining. Having celiac destroys your villi. Those are microscopic hair like things that help you absorb nutrients. They grow back once you have been gluten free for a bit. While celiac can make us have a stronger tendency to certain cancers and other autoimmune issues that doesn...
  15. "Nope. They are not. We have not validated for gluten free. We do not operate allergen-free manufacturing sites, however we do have allergen management programs in all our facilities. The intent of these programs is to avoid unintentional cross-contamination of allergens between products. Our product labels adhere to the FDA’s strict regulations regarding d...
  16. Welcome to the board. Celiac can be tough to deal with especially socially. Can you tell us more about what you are having difficulty with so we can try and help? Feel free to ask any questions needed and do feel free to vent a bit. It is good that you have a freind with celiac but it is good to get input from others who have struggled and perhaps come out...
  17. Iodine can keep the antibodies active in the skin. I just had to drop iodized salt and got vitamins without iodine. Some need to avoid high iodine foods like seaweed and some seafood as well. It is important to add iodine back in after you haven't had any new breakout for a couple months or so. I also made sure any topicals like shampoos, soaps etc were...
  18. Unfortunately our reactions can be delayed by up to 3 or 4 days. That can make it hard to figure out what got us. In addition after we have been gluten free for a bit other intolerances can rear their ugly head. I thought I was reacting to gluten in items that were not only gluten free but made in dedicated facitities. In my case it did turn out to be soy...
  19. I had DH from childhood until I was diagnosed in my 40's. Within a week of being gluten free and dropping iodized salt I stopped getting new lesions. However for the first couple years even a bit of CC would cause a new lesion within hours. It took at least a couple years of being very strict before the lesions became the last thing to let me know I had...
  20. You may want to insist that he do an endoscopy at the same time. Also if a full panel has not been drawn ask if you can pick up a lab slip so you can get the results at the time of the scopes.
  21. I agree with the previous poster. Your body is clearly giving you the answer as to whether you need to be gluten free. If they had done pre-diagnosis gene testing on me I would likely be dead by now. I would have been told I couldn't have celiac because I don't carry one of the two most common genes. I have a double copy of a rarer celiac gene that is now...
  22. Welcome to the board. I don't know about the charcoal tablets but what I used to use when needed was name brand pepto bismal liquic. It seemed to coat my stomach quickly relieving the pain. You should post something in either the Pre-diagnosis or Coping section with some info on the tests you had done. If you had positive blood work you very likely...
  23. Yes it is possible. Do you have copies of your tests and the results? Sometimes doctors don't run a full panel or the results are a low positive and the doctor will call it negative. Also how long ago was it that you were tested. Just because you previously were negative on testing doesn't mean you still would be. Do not go gluten free until all testing...
  24. Unfortunately you would have to do a lengthy and likely painful challenge to get any accurate celiac testing done and might still end up with a false negative. It sounds like you are doing well and healing on the gluten free diet. It can be tough but sometimes we just have to go with the 'diagnosis' our bodies are giving us. Do read the Newbie 101 thread...
  25. As Ennis mentioned do check for other intolerances. For myself soy protein or flours cause joint pain in addition to gluten. A food and symptom diary can be very helpful as can be the elimination and challenge. Sometimes when we eliminate a food the reaction when added back in can be delayed for up to a week. So if you, for example, drop soy for a couple...
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