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University of Chicago Celiac Disease Center

The University of Chicago Celiac Disease Center (UCCDC) was established to develop and coordinate patient services, research activities, medical education and public awareness initiatives in order to increase the rate of celiac diagnoses and improve the lives of patients in the Midwest. Our efforts are focused on the Chicago area, but every UCCDC program is created with the intention of making it portable so that other medical centers can implement similar programs with proven results.

Created by Stefano Guandalini, M.D., an international expert on celiac disease, and Robin Steans, mother of a child with celiac disease, the UCCDC is a unique partnership between a dynamic external advisory board and a premier academic medical center. This endeavor is enhanced through a close working relationship with the Celiac Sprue Association of Greater Chicago and the Friends of Celiac Disease Research in Milwaukee, Wisconsin.

Since February, 2001, the UCCDC has launched activities in four program areas:

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  • Patient Services: Helping people who are at-risk for celiac disease to learn how they can be tested, and providing information and support to newly diagnosed patients and their families.
  • Professional Education: Expanding the knowledge base of physicians and dietitians who come in contact with at-risk patients so that they can identify people in need of testing and provide appropriate nutritional counseling to newly diagnosed patients.
  • Research: Contributing to the body of scientific knowledge on celiac disease, focusing especially on key unanswered questions regarding the prevalence of celiac disease in the U.S. and in special at-risk populations.
  • Advocacy and Awareness: Heighten the awareness of the general public, most importantly on the symptoms of celiac disease so that persons found to be at risk may be tested, and advocate for better food labeling, increased research funding and improved public accommodation for people with celiac disease and their families.

Our Accomplishments:

  • Developed a patient care package program that provides concrete tools like a listing of gluten-free foods, a grocery store guide, newsletters, and memberships to local and national celiac organizations, as well as donations of gluten-free foods for children newly diagnosed with celiac disease and their families. Parents who have received the care packages have said that they feel less overwhelmed about learning the gluten-free diet, and less afraid about what to feed their children. Families receive the care package at the time of diagnosis.
  • Designed a clinical protocol to educate primary care physicians about celiac disease through an educational intervention and a year-long study that helps to identify current patients at risk for celiac disease in their practices. The protocol is being finalized and the program will begin to recruit participants shortly.
  • Planned and implemented an educational event for parents, featuring noted author Danna Korn, speaking on celiac disease and the challenges of raising a child with the condition. During the parents presentation, children were kept busy nearby at a gluten-free carnival. Over 175 people were in attendance, and participants expressed great relief in finding other parents to talk with who were experiencing their same anxieties and fears.
  • Featured in a Sunday Chicago Tribune health article on celiac disease, where the UCCDCs telephone number was listed as a resource for readers. Over 125 calls were generated, which led to 6 people getting tested (that we can confirm) and at least one woman, to date, receiving a diagnosis of celiac disease as a result of the article.
  • Created a dedicated celiac disease clinic at the University of Chicago Childrens Hospital, staffed with professionals who are dedicated to the diagnosis and treatment of celiac disease.

We are so grateful for the support weve received from organizations, companies and individuals serving the celiac community and look forward to keeping you updated on our progress and upcoming activities.

The University of Chicago Celiac Disease Center
at The University of Chicago Childrens Hospital
5839 S. Maryland Avenue, MC 4065
Chicago, Illinois 60637
Tel: (773) 702-7593
Fax: (773) 702-0666
Internet: www.cureceliacdisease.org

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Celiac.com Celiac Disease & Gluten-Free Diet Forum - All Activity

MelissaNZ, Has your daughter been checked for vitamin deficiencies??? Vitamin D deficiency symptoms include urinary incontinence, oral candidiasis (thrush), skin rashes, bumps on the backs of arms, joint pain, distended stomach and short stature. Bones can't grow much without vitamin D. Vitamin D deficiency causes delayed gastric emptying (food doesn't move through the gastrointestinal tract at a normal speed and the intestines bloat) which explains your daughter's delayed reaction to the cake. Vitamin A deficiency is also a cause of bumps on the back of the arms. Vitamin A deficiency causes vision problems. Vitamin A and D are both fat soluble vitamins. Absorption of fats is a problem for Celiacs. So is absorption of B vitamins and important minerals. B Complex vitamins are water soluble and must be replenished every day. Skin rashes are associated with several B vitamins like niacin (B3), B12, and thiamine (B1). I went through a period of severe malnutrition prior to diagnosis. It was not a pleasant experience. I had symptoms similar to your daughter's, including the incontinence, which resolved on vitamin D supplementation. Please, please have your daughter tested for vitamin D deficiency. And have her B vitamins checked as well. Celiac Disease causes malabsorption. Malabsorption causes deficiency diseases. Newly diagnosed Celiacs need to be checked for deficiencies. I hope this helps.

I will try to make my long story short, I have been searching my whole life for a diagnosis, I have seen pretty much every doctor possible I even went through a spinal tap recently because they thought I had multiple sclerosis, when I was younger I was always throwing up and having stomach problems, a couple hospital visits they thought I had appendicitis, I started having a neurological symptoms as well as anxiety and depression, The fatigue was just over bearing, I was having numbness and tingling and muscle spasms all the time eventually started having seizures, which kind of cycled through and stop happening after a couple months, and then it dawned upon me my brother has celiac pretty severely, my grandmother also has celiac, my dad does as well, I don't know why I never thought that it could be my issue, for the last week I have Been gluten-free and steering clear of cross-contamination, my dizziness is improved my fatigue is improved as well as rashes I was getting on my arms and sides, I have no more muscle jerks or spasms, The problem is I have horrible insurance and I cannot afford testing, so I am at least trying to do it an home blood test, I know it's not very accurate on telling me if I have celiac or not, But the thought I may never know for sure if I have it is very daunting. My family keeps telling me you don't need to spend thousands of dollars to have a doctor tell you you can't eat something you already know you can't. Just was wondering if anybody else has been in my position and seeing if anybody has a vi just was wondering if anybody else has been in my position and seeing if anybody has advice, I don't want to be known as one of those people who believe they have something and people with the disease frown upon them it's a very scary thing to think about.

...ON a side note this is quite easy, you can make your own out of any gluten-free Bread mix, I recently started using a coconut flour blend for this.......Most often people associate caraway with Rye Bread so you just add caraway seeds to the dough and a bit more vinegar to sour it a tad and BAM gluten-free Rye Bread knock off. I think Authentic Foods even has a additive to put in bread mixes to make it taste like Rye Bread....Or you can buy it preamade, I have issues with all the other ingredients but as for one of the best gluten-free Breads out the Canyon House makes a Rye like bread https://canyonglutenfree.com/buy-gluten-free-bread-products/Gluten-Free-Rye-Deli-Sandwich-Bread.html

Took me less than a minute, although why did they need our addy and phone?

As mentioned before you said she had rashes, have they checked if that is DH? That is a positive sign of celiac and those with the DH manifestation can have problems getting a postive with the gut biopsy. Here are some links. https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/ https://www.gluten.org/resources/getting-started/dermatitus-herpetiformis/ Please read up on this. She can get the rash tested for the disease if it is DH.