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JustJust

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About JustJust

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    Community Member
  • Birthday 01/01/1980

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  • MSN
    Justpsychology@hotmail.com
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  • Gender
    Female
  • Interests
    Nursing - Gastroenterology - Psychiatry
  • Location
    NJ
  1. I had muscle twitching before the DX and then went gluten free (strict) and now 2.5 years later the muscle twitching in the legs is back even though all my lab values are normal. I'm still going to keep taking my calcium, vit.D and multi vit and even up the dose to see if that works......(of course, you should talk to a dr. before taking doses of meds above the recommended daily value)
  2. My celiac started out with all NEURO/NERVE problems....had the CT-scan for MS just like everyone else with celiac seems to have, resulting with a negative. Low Calcium can cause Muscle twitching, you need to have lab work drawn to show your vitamin and mineral deficiencies, you probably have more than one, Ferritin (iron), B12, etc....... Justine RN
  3. Are you sure these are esophagus spasms? Sounds like Gastritis to me! Google Gastritis and stick to a diet that avoids coffee, spices, alcohol, etc..... for two months and see if you improve.
  4. Maybe someone can shed some light on this......... Not only was I daignosed with Celiac 6 months ago but I just had a Glucose tolerance test and it indicated that I have diabetes as well.... I AM SO UPSET!!! It's it possible that this could e a false positive because of the celiac? I know carbohydrates are absorbed in the small intestine so if I have no villi to absorb them maybe extra glucose is floating around in my blood causing it to be elevated? If I have diabetes I feel like I am totally screwed! Does anyone else have Celiac and diabetes? If so, can you give me some advice or tips on how to get it under control? Thanks so much, it's greatly appreciated! Justine
  5. Just wondering if anyone else had this problem............. My vit. D levels were extremely low so my dr. put me on 50,000 units of vit. D weekly for 3 months and I also took a Calcium supplement of 2000 mgs daily which had about 1,500 mgs of Vit. D in it......... Anyway, after 3 months my levels were within range but on the lowest side so they gave me two more months of vit. D and now I am suffering from horrible back pain which feels like my kidneys. I am wondering if it could be because now I have too much calcium and vit. D in my system or if I have been gluteneted by CC the past few weeks.......... Does anyone else ever suffer from back pain that feels like it's from their kidneys when glutened along with really sore muscles that feel like they just worked out? Any input would be appreciated! Thanks, Justine
  6. THANKS BRIAN I WILL DEF CHECK IT OUT~
  7. THe stuffed animals in the freezer for a minimum of 8 hours will do the trick! Justine RN
  8. Hi Everyone, Just wondering if someone could recommend a good probiotic supplement for me! I am one of those Celiac's that never suffered from GI symptoms. The past ten years before I was diagnosed though I had been anemia had osteoporosis, joint pain and nerve pain.......... Once in a while I would get constipation and gas but nothing that the average person didn't get.................... HOWEVER, Since going gluten-free i am having stomach problems? Don't know why in the world this is happening, most of my other symptoms have improved but this stomach issue has sucked big time..... I am wondering if a probiotic will help me out but I haven't have the slightest clue as to what to take that is gluten-free or even where to begin when picking out a brand. Any information would be greatly appreciated! Thanks so much, Justine P.S Today is my 4month gluten-free anniversary............ WOO HOO!
  9. Can someone please suggest a brand of probiotics that are gluten-free that they use? Funny, I never in my life had any stomach issues and was only dx with celiac disease because of my iron deficiency and osteoporosis at the age of 27. However, since I have gone gluten-free I am now getting stomach pains........ I almost wish i didn't go gluten-free because of it..... well maybe not because my peripheral neuropathy has gone away as well as my bone pain and hand numbness. Anyway could someone please post some PROBIOTIC brands that they are using that are good. I never tried them before and am hoping that maybe they will help with these stomach issue I now have! THANKS
  10. Phase IIb Study to Study the Efficacy of AT1001 to Treat Celiac Disease This study is currently recruiting participants. Verified by Alba Therapeutics, November 2007 Sponsored by: Alba Therapeutics Information provided by: Alba Therapeutics ClinicalTrials.gov Identifier: NCT00492960 Purpose This study will look at 3 doses of AT1001 for efficacy and safety for the treatment of celiac disease. The primary efficacy outcome is to evaluate the efficacy of multiple dose levels of AT-1001 in preventing intestinal permeability changes induced by a 6- week gluten challenge. Condition Intervention Phase Celiac Disease Drug: AT-1001 Drug: placebo Phase II MedlinePlus related topics: Celiac Disease Study Type: Interventional Study Design: Treatment, Randomized, Double Blind (Subject, Caregiver, Investigator, Outcomes Assessor), Placebo Control, Single Group Assignment, Efficacy Study Official Title: A Phase IIb, Randomized, Double-Blind, Placebo Controlled, Dose Ranging, Multicenter Study to Determine the Safety, Tolerance, and Efficacy of AT-1001 in Celiac Disease Subjects During a Gluten Challenge Further study details as provided by Alba Therapeutics: Primary Outcome Measures: To evaluate the efficacy of multiple dose levels of AT-1001 in preventing intestinal permeability changes induced by a 6- week gluten challenge. [ Time Frame: 6 weeks ] Secondary Outcome Measures: To prospectively validate a composite, weighed index of celiac disease activity [ Time Frame: 6 weeks ] Enrollment: 2007 Start Date: August 2007 Expected Completion Date: April 2008 Arms Assigned Interventions 1: Experimental AT-1001 capsules 1 mg with 900mg gluten Drug: AT-1001 capsules, TID 2: Experimental AT-1001 capsules 4 mg with 900 mg gluten Drug: AT-1001 capsules, TID 3: Experimental AT-1001 capsules 8 mg with 900 mg gluten Drug: AT-1001 capsules, TID 4: Placebo Comparator Drug placebo capsules with 900 mg gluten Drug: placebo capsules, TID Detailed Description: This is an outpatient, randomized, double blind multicenter study. Subjects will remain on their gluten-free diet throughout the duration of the trial. Study drug or drug placebo capsules will be administered TID 15 minutes before each meal (breakfast, lunch, and dinner). Gluten or gluten placebo capsules will be taken TID with each meal. Eligibility Ages Eligible for Study: 18 Years to 72 Years Genders Eligible for Study: Both Criteria Inclusion Criteria: Eligible subjects must meet all of the following criteria before being enrolled into the study: Age between 18 and 72 years, inclusive. Diagnosed with celiac disease for more than 6 months. Anti-Tissue Transglutaminase (anti-tTG) less than 10 EU. On a gluten-free diet for at least 6 months. BMI between 18.5 and 38, inclusive. Exclusion Criteria Subjects meeting any one of the following criteria are not eligible for the study: Current smoker. Has chronic active GI disease other than celiac disease (e.g. Crohn's, Colitis). Has diabetes (Type 1 or Type 2). Unable to abstain from alcohol consumption for 48 hours prior to each intestinal permeability collection throughout the study. Unable to refrain from consuming non-steroidal anti-inflammatory agents, including aspirin ("NSAIDs") for 48 hours prior to each intestinal permeability collection throughout the study. Participated in any clinical drug study within the past 30 days or has had previous exposure to AT-1001. Presents with or has a history of dermatitis herpetiformis. Contacts and Locations Please refer to this study by its ClinicalTrials.gov identifier: NCT00492960 Contacts Contact: Alba Therapeutics 1-877-415-3282 clintrials@albatherapeutics.com Hide Study Locations Locations United States, Arizona Study Site Recruiting Scottsdale, Arizona, United States, 85259 United States, Colorado Study Site Recruiting Colorado Springs, Colorado, United States, 80907 United States, Illinois Study Site Not yet recruiting Chicago, Illinois, United States, 60637 United States, Kentucky Study Site Recruiting Lexington, Kentucky, United States, 40536 United States, Maryland Study Site Recruiting Hagerstown, Maryland, United States, 21740 United States, Massachusetts Study Site Recruiting Boston, Massachusetts, United States, 02215 United States, Michigan Study Site Recruiting Troy, Michigan, United States, 48084 United States, Minnesota Study Site Recruiting Rochester, Minnesota, United States, 55905 United States, New York Study Site Recruiting New York, New York, United States, 10032 United States, North Carolina Study Site Recruiting Asheville, North Carolina, United States, 28801 United States, Ohio Study Site Not yet recruiting Cleveland, Ohio, United States, 44195 United States, Pennsylvania Study Site Recruiting Pittsburgh, Pennsylvania, United States, 15243 Study Site Recruiting Philadelphia, Pennsylvania, United States, 19107 United States, Texas Study Site Recruiting Plano, Texas, United States, 75093 Study Site Recruiting Houston, Texas, United States, 77030 United States, Virginia Study Site Recruiting Richmond, Virginia, United States, 23298 United States, Washington Study Site Recruiting Seattle, Washington, United States, 98101 Canada Study Site Not yet recruiting Toronto, Canada Study Site Not yet recruiting Calgary, Canada Study Site Not yet recruiting Montreal, Canada Study Site Recruiting Winnipeg, Canada Canada, Alberta Study Site Not yet recruiting Edmonton, Alberta, Canada Canada, British Columbia Study Site Not yet recruiting Kelowna, British Columbia, Canada Sponsors and Collaborators Alba Therapeutics Investigators Study Director: Francisco Leon, MD, Ph.D. Alba Therapeutics Corp More Information Alba Therapeutics Study ID Numbers: CLIN1001-006 First Received: June 25, 2007 Last Updated: November 20, 2007 ClinicalTrials.gov Identifier: NCT00492960 Health Authority: United States: Food and Drug Administration; Canada: Health Canada Keywords provided by Alba Therapeutics: Celiac Disease Study placed in the following topic categories: Metabolic Diseases Gastrointestinal Diseases Malabsorption Syndromes Celiac Disease Metabolic disorder Intestinal Diseases Additional relevant MeSH terms: Digestive System Diseases Nutritional and Metabolic Diseases ClinicalTrials.gov processed this record on November 27, 2007 U.S. National Library of Medicine, Contact Help Desk U.S. National Institutes of Health, U.S. Department of Health & Human Services, USA.gov, Copyright, Privacy, Accessibility, Freedom of Information Act
  11. JOSS, I WAS DIAGNOSED WITH RSD! NOT MANY EVEN KNOW WHAT THAT WAS, SO I WAS EXCITED TO SEE THAT YOU HAVE IT TOO. TOO BE HONEST WITH YOU NOW THAT I FOUND OUT I HAVE CELIAC (3 MOS.) AGO, I AM NOT SURE THAT I REALLY HAVE RSD? MY PAIN LEVELS HAVE GREATLY IMPROVED IN THE PAST THREE MONTHS. I WAS AT THE POINT THAT I WAS WHEELCHAIR BOUND FOR 4 MONTHS. THE PAIN WAS HORRIBLE AND NO ONE THOUGHT TO CHECK MY BLOOD WORK AGAIN OR LOOK INTO THE FACT THAT I HAVE BEEN ANEMIC FOR YEARS. THE ONLY REASON THEY FOUND OUT ABOUT MY SEVERE OSTEOPOROSIS AT THE AGE OF 27 IS BECAUSE THEY WERE SAYING A BONE SCAN WAS NEEDED FOR THE RSD. WELL THE RSD WAS IN MY LEGS AND NOW THE SCAN CAME BACK SAYING OSTEOPOROSIS IN MY HIP AND SPINE, WHICH LED TO BLOOD TESTING OF MY VIT D. ENDS UP MY VIT. D WAS SO LOW BECAUSE OF THE CELIAC. HOW LONG HAVE YOU BEEN GLUTEN FREE. MOST OF MY RSD SYMTPOMS HAVE GONE AWAY EXCEPT FOR THE COLDNESS IN MY FEET. THEY STILL GET ICE COLD AND PURPLE SOMETIMES. BUT THE PAIN, OH MY HAS THE PAIN IMPROVED. I AM NOT 100% BACK TO NORMAL BUT AM PRAYING WITH MORE TIME ON THE gluten-free DIET I WILL START FEELING BETTER. HOW WERE YOU DIAGNOSED WITH RSD? WHEN? i AM VERY INTERESTED TO HEAR ABOUT IT, IF YOU WOULD LIKE TO SHARE! THANKS, JUSTINE
  12. STEVE, I tell everyone about it! I look at it as a teaching moment for a lot of people. Since celiac disease is so common you never know who is also suffering from it that may be misdiagnosed! I suffered horribly for months and actully thought I was going to die and when I found out it was celiac disease i was so happy that I spread the word to everyone about what I have. In a weird way it makes me feel special. I have to have my food prepared specially now and think about how much healthier I am getting everyday by not only eating gluten-free but eating "good for you" foods now! I just broke up with my fiance and wonder what it will be like dating in the future and having to tell someone I have celiac disease. I have come to the conclusion that if they can't accept me for what I am than I don't need them in my life. WE CAN"t do anything about the celiac disease to reverse it so we MUST maintain a gluten-free diet, it's as plain and simple as that. I don't plan on telling those that I date in the future right off the bat I have a DISEASE i would rather kindly put it as a food allergy and then gently break them into the disease that it really is. Yes disease does have a negative connotation to it............. so for now food allergy will do. Oh YEAH and about getting made fun of........ I am known as Glutey to the family now......... SO I EMBRACED IT and made a shirt for myself with the name Glutey on it! if you already haven't seek out a local support group and ask others how they cope and manage with it, we are all in the same boat and I'd rather swim than sink, so I say the hell with anyone who doesn't understand. Hope my celiac sense helps! Justine :-)
  13. Hello, My level for all three Antibody tests where each over 100. The range was like 3 -9. Does anyone else have OR HAD an antibody level this high before? I read a few people had 14 or 28 but 100, that's pretty bad don't you think? Also, does anyone know what that means? Does the higher the number mean the worse the condition? Thanks, justine
  14. IF ANYONE KNOWS MUSCLE PAIN IT'S ME! INFACT I DIDN'T FIND OUT ABOUT MY CELIAC UNTIL I STARTED HAVING THE PAIN. My legs would ache and i wasn't able to walk on my feet for a few months. I saw 26 doctors all of which blew me off and one actually accused me that it was impossible for me to be in so much pain for no reason. Well..... a month ago they finally found out that i had celiac and even though i have been gluten free for that long the pain still hasn't gone away............ I am praying that it at least gets better! Don't let ANY DOC Tell you it's all in your head......... Once you get that vibe from them............... off you go to a DOC who will listen to you and take you seriously.......... Listen I am a nurse (DOC's and Medicine in the US are TOTALLY SCREWED UP) and it took me 26 DOC's to find out that I wasn't crazy, even my psychiatist labeled me as a hypochondriac! Hope this helps and good luck i wish you the best! Justine
  15. THANK YOU EVERYONE FOR THE REPLYS! I AM SO HAPPY I HAVE BEEN gluten-free FOR 10 DAYS.......... never thought i would make it this far............... only about 50 years left.....LOL