Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Research Study On Health-related Quality Of Life, Cognitive Performance And Celiac Disease

lisabarella

By lisabarella
in Related Issues & Disorders

Recommended Posts

lisabarella Apprentice
lisabarella
Posted

Hi all,

This is Lisa Barella and I am recruiting for a research study that I am conducting for my dissertation at the University of North Carolina at Greensboro. Please read below and if you would like to participate or want more information, please feel free to email me or call me. Thank you!

Volunteers are needed for a University of North Carolina at Greensboro Study on health-related quality of life, cognitive performance and Celiac Disease.

We need adults, with Celiac Disease, ages 20 and 75, to volunteer to complete questionnaires, cognitive tests, and fitness tests. Testing will take approximately 2 hours.

Ideally, you would have to be able to travel to North Carolina (Greensboro, Winston-Salem, Chapel Hill, Durham, Raleigh, Charlotte, Boone, or Ashville), Pennsylvania (Philadelphia, Montgomery, or Bucks County) or Naples, Florida. If there is enough interest in another United States city, then I would consider traveling there.

You will receive information regarding your aerobic fitness and a small donation will be made to the Gluten Intolerance Group in your name.

For more information, email or call Lisa A. Barella at lisabarella@hotmail.com or (336) 253-5539.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted

Lisa, good to hear from you again.

When will this study be conducted? It sounds interesting. Can you offer a little more information, please

jerseyangel Proficient
jerseyangel
Posted

Yes Lisa--good to see you again! :D

  • 3 weeks later...
lisabarella Apprentice
lisabarella
Posted
  • Author
Lisa, good to hear from you again.

When will this study be conducted? It sounds interesting. Can you offer a little more information, please

to the other Lisa....

The study is going on NOW. I am conducting the phone screenings. I have been overwhelmed with the number of responses. It is hard getting back to everyone immediately, but I am trying to return emails as quickly as possible. I am very excited about the study. I returned 323 emails in the last 72 hours. I am in the process of making 97 screening calls. Testing will start in April. I am going to be away at the Society of Behavioral Medicine conference at the end of March presenting data from a pilot study that I conducted last year on celiac disease, exercise, quality of life, anxiety, and depression. So, in April, I am gong to test everyone that I can at UNCG (Greensboro, NC) and then I will be moving through NC. In early May, I will head to Bucks County - in PA - to test up there. In late May, I will be down in Naples, FL. I will be back testing in NC in June. I am self-funding this research on my graduate stipend, so the locations are limited and were picked because I have housing, car, food, etc., in both of those areas. I would love to travel the country (and world) testing, if I could. Let me know if you have any other questions. Thanks so much! Lisa

  • 1 month later...
lisabarella Apprentice
lisabarella
Posted
  • Author
Lisa, good to hear from you again.

When will this study be conducted? It sounds interesting. Can you offer a little more information, please

Lisa - are you interested in participating?

Volunteers Needed for a Research Study at the University of North Carolina at Greensboro (UNCG)

A doctoral student in Exercise and Sport Psychology is currently seeking people with Celiac Disease for a research study looking at the relationship between physical activity, aerobic fitness, health-related quality of life and cognition. Participants should be diagnosed (blood or biopsy) with Celiac Disease and between the ages of 20 and 75 to participate. The testing is occuring in April, May, and June at the University of North Carolina at Greensboro. Lisa is also going to travel to Asheville, NC, Durham, NC, Newtown, PA, or Naples, FL. Email her at lisabarella@hotmail.com for specific dates in those cities.

If you traveled to UNCG, the study would be conducted at the Health and Human Performance Building and our indoor track. At the other above-mentioned locations, the study will be conducted at a local meeting room, fitness center, or park.

Upon arrival at the testing site, informed consent will be obtained and then information will be gathered via questionnaires that assess general demographics, gluten-free diet, and health. Next, four cognitive tests will be performed and these will assess executive function. Third, you will complete surveys about your physical activity level and health-related quality of life. Fourth, you will perform a functional fitness test. Finally, you will complete a 1-Mile Fitness Walking Test, a submaximal test of aerobic fitness. This test will require you to walk as quickly as possible for one mile.

If this study seems of interest to you, please email or call Lisa Barella at lisabarella@hotmail.com or 336-253-5539, so that you can complete the 10-minute phone screening.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. xxnonamexx
      - xxnonamexx posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Fermented foods, Kefir, Kombucha?

      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested...
    2. SamAlvi
      - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing...
    3. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Blood tests for thiamine are unreliable. The nutrients from your food get absorbed into the bloodstream and travel around the body. So, a steak dinner can falsely raise thiamine blood levels in the following days. Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine?
    5. knitty kitty
      - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine. Legumes (beans) do contain thiamine. Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and Cobalamine B12 are mostly found in meats. Meat, especially organ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,876
    • Most Online (within 30 mins)
      7,748
    pilber309
    Newest Member
    pilber309
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      I have read fermented foods like sauerkraut, pickles, Kefir, Kombucha are great for gut health besides probiotics. However I have searched and read about ones that were tested (Kefir, Kombucha) and there is no clear one that is very helpful. Has anyone take Kefir, Kombucha and noticed a difference in gut health? I read one is lactose free but when tested was high in lactose so I would probably try a non dairy one. Thanks
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.