Functional Gut Disorders: Patient Education and Advocacy

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Well, Hello from Washington DC.kate and abe

I have been here now for 5 days and been very busy! I should say, busy but loving it.

As I have mentioned in previous posts, I was asked to speak at a patient symposium hosted by the University of North Carolina at Chapel Hill.  This symposium covered all types of functional GI disorders from heartburn and chest pain through fecal incontinence…and of course, included IBS and everything in-between. There are over two dozen chronic functional GI disorders! Numerous digestive health experts spoke about their area of expertise to provide the latest about diet, medical treatments, role of fiber and probiotics, hypnotherapy and cognitive behavioral therapies. Even topics such as how you and your doctor can work best together were covered.  To learn more about UNC’s Functional Gut Disorder Program and visit their video library which will include this symposium click here!

Following the patient care symposium,  folks from the International Foundation for Functional Gastrointestinal Disorders (IFFGD) and it’s grass roots arm, Digestive Health Alliance, gathered a group of us to visit Capital Hill to help with lobbying efforts to increase awareness of functional gut disorders, encourage congressmen and women to co-sponsor bill HF 842, the Functional Gastrointestinal & Motility Disorders Research Enhancement Act.  And of course, to ask that more money be allocated to NIH and appropriated for research for functional gut disorders.

dc capital

Learn more on how you can support IFFGD’s mission by visiting their site here!

One of my favorite parts of being involved with GI patient care events is that I am surrounded with other health professionals and patient advocates.  Translation=smart but extremely compassionate people.  I love having time to talk with the doctors as they bring with them a wealth of knowledge and perspective.  To be honest, I might drive them a little crazy with all my questions… 🙂

One of my favorite patient advocates and educator’s is Crystal Saltrelli.  Crystal’s site is invaluable for the person with gastroparesis–she provides so much information to help patients that suffer with this disorder.  Visit Crystal’s site here!

Crystal and I had the chance to finally meet in person in DC.  Yay for me!kate and crystalSo I hope you consider becoming a friend of IFFGD/DHA–and maybe next year we can all visit Capital Hill together to make an even greater impact —more people–more voices–greater change!

Enjoy your day.  Today is my birthday….and I am hoping to spend some time taking it down a notch! 🙂

 

 

20 replies on “Functional Gut Disorders: Patient Education and Advocacy“

  • Nicole Garcia

    They also need to fight for us to get disability. If you look at the list of digestive disorders one can have to qualify for disability the list is very slim. It’s not fair. We are losing jobs because we have to miss days of work because we are ill. It’s not fair. I am so happy someone is being a voice for us. I appreciate so much what you are doing!!!

  • Bonnie

    Happy Birthday Kate. Have a great day,:-) May you enjoy a warm and gentle journey into and through this next birth year.

  • Lauri

    Happy Birthday! So glad you got to meet Crystal. I had a phone consult with her when the doctors couldn’t figure out what was going on with me and she is the one that led me down the low FODMAP path and eventually to you! So thankful for both of you and all that you do.

  • Janet Sommers

    So disapointed I missed this seminar, I don’t live far from chapil hill! I assume this was for lay people.

    • katescarlata

      Janet, Don’t be too disappointed! Yes, this was a patient geared conference but… despite being organized by UNC –Chapel Hill–we actually all met up in Washington DC to hold the conference. The other important news is that the entire conference has been videotaped and UNC will post it on their website sometime in August! So stay tuned!

  • Lucy

    Hi Kate,
    The Monash app lists pasta sauce as high fodmap, but tomato is ok. Is the high fodmap rating to do with the concentration of the pasta sauce or the extra ingredients usually found in pasta sauce like onion and garlic?

    • katescarlata

      Lucy, it is likely they are referring to the onion and garlic portion of the sauce as they note pasta sauce high in oligosaccharides–GOS and fructans. If the sauce was very concentrated the fructose content would increase.

      • sally larhette

        Luckily, RAO”S Sensitive marinara is fabulous, no garlic, no onions and low salt!!! I can easily make my own sauce…why, whne it comes in a glass jarWait for sales to sae 2 dollars a quart…Great anywhere you
        desire, even scopped out of the jar for a quick snack, reminds you of pizza!

        All the best. Iam finding that avoiding Fodmops makes a big difernece to my “gut.” Found it by reading on the Celiac site!!

  • Christina

    Hello Kate!

    Do you have any info on aloe juice? I’ve been reading its good for the body and skin but didn’t know if it was okay for fodmappers!!

    Thanks!
    Christina

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