Glucose Galactose Malabsorption Deficiency
What is Glucose Galactose Malabsorption Deficiency?
Glucose Galactose Malabsorption Deficiency is a genetic disorder where the small intestine is unable to absorb and transport glucose and galactose in food.
Last updated 18 Sep 2014, 11:06 PM
18 Sep 2014, 11:06 PM
Has anyone been diagnosed with this - Congenital Glucose Galactose Malabsorption Deficiency [CGGM or GGM as it is known]- as an adult? This is a serious, life-long genetic disease which usually is diagnosed the first weeks of an infants life [if a doctor is really sharp and knows what to look for, that is -- at least it is in the current medical books now as a brief note] ----It most definitely IS NOT your usual smug diagnosis of "Lactose Intolerance" that gastroentrologists and family doctors insist is the answer to everything. [I'm sorry if I sound grouchy, but I am so tired of having to explain to doctors that taking a pill form of lactase replacement IS NOT going to cure this!!!!] I almost didn't make it as a baby, then sickly growing up, and still fighting continually with my diet into my 70's. I eat an absolutely-100%-dairy-free + gluten free + as-low-sugar- as-I-can-make-it diet. See the following for a good start to your research : [http://en.wikipedia.org/wiki/Glucose-galactose_malabsorption]
Clinical Trials
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
- Complete the screening form.
- Review the informed consent.
- Answer the permission and data sharing questions.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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