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Celiacandme last won the day on June 4 2015

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About Celiacandme

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  1. Yay for a painfree day, bartfull! Did they start you on plaquenil or something when they diagnosed you with lupus? I hope you find that today is pain free as well and that good days always continue for you!
  2. This will definitely take some time. I'm sorry you are going through this. I can sympathize that it is difficult to deal with this while you want to care for and enjoy your young child. You need to be gentle with yourself and give your body time to heal. It can be a long road. As your wife learns more she'll understand more. It is difficult to understand what this does to a body if you haven't experienced it and if you are at the beginning of the diet. Some people feel worse before feeling better. Not everyone but some. It took quite a long time for me to see some improvement. We all react differently. Eat good clean foods that are anti-inflammatory. Make sure you aren't getting cross contamination somehow and that you are taking any vitamins your body needs. Come here and talk to us or ask questions. You'll get there but it won't happen overnight. Keep us posted on how you are doing.
  3. I'm just curious if anyone here has had to take immunosuppressants because of their celiac disease? If so, were you able to come off it after some time? What made the determination that your body needed to take it? Did you notice a difference? If anyone has anything to share regarding celiac disease and immunosuppressants, I'd love to hear it. Thanks so much!
  4. Since you were diagnosed last year remember your body is still adjusting and working on the healing process. Celiac disease can send inflammation to all areas of your body. I hope that the inflammation you are experiencing is caused by this. Are you eating dairy? Let us know how it goes with the immunologist this next week. A rheumatologist, like ravenwoodglass mentioned, would be a good doctor to see to rule out some of these other autoimmune diseases. We are thinking of you!
  5. Bartful - It sounds like you really like this doctor - yay! Have you heard any results yet? If they suspect lupus some tests that CAN BE associated with lupus are PT, PTT, DRVVT, Hex Phase Phoso Neut, and they'd want to run your complement levels (C3, C4, perhaps others). C3, C4 could indicate disease activity in your body but do not specifically mean lupus. Before these tests or at the top of the blood work list they usually run your ANA and some antibody levels. (there is a list of them between 7-10) They do not all mean lupus; some could indicate a possibility of a different rheumatology disease but one that they'd check called anti-dsdna is fairly often seen in lupus patients. Lupus is hard to diagnose so if any of the above are positive that does not necessarily give you that diagnosis. Also ANA indicates inflammation in your body and many have positive ANA's bc of numerous different autoimmune diseases. Keep us posted. I hope you are feeling better soon and have answers soon on your thyroid and sed rate. Oh and the rash that looks like eczema - does it come and go or stay for quite some time?
  6. For those of you that have determined you can't handle sulfites - how did you determine? What kind of symptoms did sulphites cause you? Was this during the healing process for you and were you able to add them back in?
  7. You never know. If I were you I would schedule an appt with my gp. Explain to them your bathroom issues, etc, and request that they run the full celiac panel on you. Keep eating gluten so it will be accurate. I would tell them you'd really like to be tested because of the fact that you are having some issues and your grandmother has it. Good luck. Keep us posted!
  8. Thanks for updating us. Glad you have an answer now. I hope you are feeling better soon after adjusting to your new gluten-free lifestyle. Healing vibes coming your way!
  9. I use Alterna haircare products and have been happy with them. I always check for gluten free on their bottles and usually it either states free of Gluten on the front of the bottle or Gluten free on the back at the bottom. There may be some of their products that are not gluten free. I'm not sure. (I feel like some of their products for color treated hair may not have been) I love their Bamboo anti-humidity hair spray and their Caviar anti-aging seasilk oil gel. Otherwise I haven't tried any of their other leave in products. Also love their shampoo/conditioner. I've tried Caviar Anti-aging Replenishing Moisture, Bamboo Luminous Shine, and Bamboo Abundant Volume. I'll check out this thread - I'll be curious to see how others respond. Always interested in learning about new gluten-free haircare products. By the way, it is a little expensive but it really lasts quite a while. You don't need tons. A little goes a long way with this product. At least for me and I have long hair.
  10. I agree with cyclinglady...you have so many positives I would almost be surprised if they did not diagnose you with celiac. I'm not surprised your rheumatologist didn't test you for the celiac blood work. They really (or I should say they ones I've seen) focus on rheumatology related diseases. I know that can be frustrating. Also, your rheum might not know tons about celiac disease. Typically, if you have not yet had reason to see a gastroenterologist, your GP would run the initial celiac bloodwork and then send you to a gastroenterologist. Good luck tomorrow. Let us know how it goes and when your results come in. I hope you get some final answers soon and can begin healing!
  11. I appreciate that you are 15 but every case is different. I'm surprised your doctor said that because you are 15 you should heal a lot faster than someone older. Even in a 7-year-old. One might think that because they were diagnosed early they wouldn't have as much damage or would heal faster but that is simply not necessarily true. Some 7 yr olds are diagnosed after "easier" symptoms and some may feel their lives were saved by finally being diagnosed. The damage, and healing time, varies greatly from patient to patient. To be honest, with what I've experienced, I would be terrified to purposely take a bite to see what what happen. Gluten was destroying me. Reading your post made me think of a story I heard not that long ago at my hairdressers. She was asking me how I was feeling knowing I had been diagnosed with celiac disease. Someone else that was in the salon heard her and shared a story about her sister. Her sister was a diagnosed celiac patient. She was getting ready to go to college and wanted to see what would happen to her if she accidentally had or was given gluten. She ate gluten on purpose to see and ended up having a terrible seizure. She never had seizures in her life before. From that time on she continued to have them. Sounds like you were lucky with how your body reacted. Be gentle with yourself and stay away from that gluten!
  12. If it was me, since you've just been gluten free this time for one week, I would call today and tell them you want the blood test run. It's a simple blood draw. Make sure they run the full celiac panel. I do believe it would be helpful to know these levels. I know they suggested going gluten free but I'm surprised they didn't run the blood tests when they told you that and then again 3-6 months later to see if your levels started coming down. (that is if they are high) Good luck and keep us posted! I hope you start feeling better soon!
  13. That's great that your GI doc routinely looks for celiac. I agree with the others - you've got a great doctor! You had an endoscopy at the same time as your colonoscopy? The book Celiac Disease: A Hidden Epidemic by Peter H.R. Green, MD and Rory Jones is a good one to check out. It easily could help you both learn more about the disease and why it is important to be strict with the gluten free lifestyle.
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