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About Joni63

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  1. Thanks for your reply. Yes, I think SIBO is what I'm about. I decided to go to the Celiac Center at Jefferson and see what happens with that visit the end of january. I can't stand this fighting battle - it's always something. Sometimes my immune system is in great shape and other times it's constant chaos. I went 8 months feeling the best ever, then crashed again. I always seem to crash and burn and it takes a long time to get back to feeling well. I have EBV and an elevated ANA score and a high DEAH-S. I'm hoping I can get good results from the Celiac Center because I need a team of doctors to figure me out. Manasota, it sounds like you have some similar issues. I hope your recent treatment helps and you are on the mend. I need to be tested for sibo and candida. SCD - specific carbohydrate diet. It's very strict and eliminates a lot of foods. One website is scdlifestyle.com
  2. Hi, I was dx'd with celiac disease 8 years ago and have been strict gluten free. I need to know what type of gut infections other's have had and how were they treated. I'm having bloating and gas and some stomach pain/discomfort. I have tried SCD diet in the past with great success and seem to do well as long as I stay on it. I cannot drink coffee/eat a lot of sugar or carbs or dairy without heart palpitations. I was treated twice for something (not dx'd) but dr's treated with 2 meds. Diflucon and 1 other I can't remember (it's a nasty one w/ lots of side effects) that cleared it up, but it always creeps back. I'm looking for a doctor in South Jersey who is knowledgeable with Celiac Disease and specifically different gut infections. I'm also looking for information on other types of gut infections and what the problem could be. I now have high blood pressure and feel it's related. Please share if you've had anything similar and especially if there is a good doctor who can help me. I will travel to Philly.
  3. Hi gifree, I just found an ND in Sewell. Her name is Jennifer Phillips and she is gluten free herself. The visit wasn't cheap and I had some blood tests that were covered under insurance and micronutrient testing I chose to pay for on my own. I have iron and vitamin D deficiencies and am working to get a few more answers for things I have struggled with for several years after my dx. (6 years ago this month). If you need any more information I can get it for you! Joni
  4. Hey! I have had this pain or tired feeling in the muscles above my right eye for a while now. My eyes also feel like they are burning sometimes. My eyebrow area looks puffier on the right side than the left and it causes my eyelid to appear slightly droopy on that side. I take clarinex occasionally for other allergy symptoms, but it really doesn't seem to help. Just wondering if anyone else has this? What causes it? Should I go to an allergist or an opthomologist? And can it be improved???
  5. Thanks Lizard00! You should start running again. Nothing better than running with music in your ears! Thanks tictax707! It's an awesome feeling. The training is really enjoyable because of the variety. Yes I am already signed up for one in June! : ) Are you doing one any time soon? I totally understand what you mean about feeling bad before diagnosis. I was the same way...terribly fatigued. I also just had severe iron deficiency about 5 weeks ago and was scared that I wouldn't be able to complete it! At the time I felt so bad and even my vision was affected. Thankfully with huge doses of iron I am feeling pretty good right now! Yes, I'd love to have a training partner! Nothing like training with a friend!
  6. Hi everyone! I am so happy I completed my first Sprint Triathlon this past Sunday! I was sick with no voice and did it just for the experience. It was AWESOME! I would highly recommend it to anyone who wants to train in swimming, running and biking. It is the greatest feeling to have finished it. Keep in mind I have no background in any of those sports...except bike riding as a child and started swimming 2 years ago and running a few years ago. If you have the desire - You can do it!
  7. Thanks Patti! It worked when I tested it...not sure what happened. I put in the actual news clip...better than the article!
  8. Yes, thank you -it is a relief. Let me tell you though...he wanted to do a colonoscopy, but was refusing to do an endoscope. I figured if I was going to get one test and prep for it, I might as well have both done. He said there was no need since I know I have celiac disease and am gluten free. Funny all my symptoms were on the left side just below the rib cage...sounds like endoscope territory to me. I'm not going back there again...2 local GI's down. One day I will find a good one...or at least one that will listen. My family doctor is pretty good about listening and testing me for the tests I really believe I should have. And I have a great Nurse Practitioner I see for vitamins and nutritional advice. I'm glad you found Enterolab and their tests. Many people on this forum have used them when doctors refused to test them or they were seeking answers. I totally understand your enthusiasm about them. Finding answers and feeling better means so much! How long have you been gluten free? How long did it take you to find out you needed to be gluten free?
  9. We all know this, but they are finally starting to ackowledge it! http://online.wsj.com/video/study-reveals-problem-of-gluten-sensitivity/BE537F06-37C9-4356-A226-31CC884BFC54.html?KEYWORDS=gluten
  10. Thank you irisheyes13. I never answered your question about casein...I did eliminate it totally. A couple days after I totally stopped eating it, my sinuses cleared up completely. On a good note, had a 2 week check up with the gastro yesterday and my catscan showed NO diverticulitus - yay I'm cleared to eat nuts, seeds and popcorn again! Wooohooo!!!
  11. I've tried melatonin 5mg time release version with no luck. My doctor is now telling me low iron can cause sleep issues. Also just an update on the Ambien CR. Just got off the phone with Sonofi-Aventis and Ambien Cr is not made with any gluten ingredients. It is not certified or tested to be gluten free, but has no ingredients in it that contain gluten. The company that I called (Teva) that had the generic zolpidem tartrate told me they cannot gaurantee theirs is gluten free.
  12. I did attempt to eliminate the soy, but wow yes it is in a lot of my vitamins. I have a pretty large stock pile of those that cost so much $$$. I did finally eliminate all dairy and my sinuses are so much clearer. My doctor gave me the name of an allergist to visit and I'll be making the appt. this afternoon. Hoping to get some kind of answers. It's hard doing this on my own....it does feel like a guessing game. What kind of test does enterolab do? I know the allergy testing is not 100%. Just hoping for a guide and not too many surprises! At least the stomach pain and belching are almost gone now. Unfortunately the bloating remains.
  13. My prescription company called the manufacturer and they said the Ambien CR is gluten free (brand name). I called one ofthe pharmaceutical companies that makes the zolpidem and was told it is NOT gluten free. Ambien CR is also listed on the gluten free drug registry as gluten free as of feb/2011. Looks like I'm placing another phone call...I'll let you know what I find out.
  14. I've had the same problem for a year now and was working out hard 5 days a week training for a triathlon...could not lose a lb. My trainer thought I was not eating enough so I upped my calories for 6 months. I did end up losing 2 lbs. by doing that, but recently took out dairy and caffeine and lost 5 lbs in a month. I'm still bloated and rotating foods to find out if I'm allergic to anything else...I believe soy is now a problem for me. Good luck finding a solution...I know how tough it is when your working out and not losing weight!
  15. I thought exactly what you meant...no worries!
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