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Missing Something

When I was visiting my sister in Atlanta a couple of weeks back, I went to a doctor’s appointment with her and while we were waiting for the surgeon to come in, I noticed a poster on the wall that was diagraming gastrointestinal diseases.  Obviously I was interested in the poster because I am weird like that.  But, I quickly became a little irritated, though, because I couldn’t find Celiac Disease on the poster.  It wasn’t there.  There were all kinds of other GI diseases listed on the poster – here are just some of them:

  • Crohn’s
  • Ulcerative Colitis
  • Gastric Cancer
  • Ulcers
  • Pancreatic Cancer
  • Colon Cancer
  • Acute Pancreatitis

What, is Celiac Disease not special enough?  Or, is it more of a case that Celiac Disease does not require medicine to treat it, like many of the other conditions mentioned on the poster.  Notice that the poster was made by Protonix, which is proton pump inhibitor, a medication used to treat GERD or gastroesophogeal reflux disease.  Maybe I am a little sensitive because I do all I can to educate others about Celiac Disease and the gluten-free diet.  According to the statistics, 1 in 133 people have Celiac Disease, yet 97% of those people are undiagnosed.  It would seem that if there is a poster hanging up in a medical office that Celiac Disease should be on that poster.  Awareness.  Of course there is not a lot of motivation by the drug companies because they don’t currently stand to make money off of people who are diagnosed with Celiac Disease, as the only treatment as of today is a gluten-free diet. 

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Maybe someday there will be a pill or a vaccine, but not today.  In the meantime, raising awareness is how we can make a difference, and there are so many ways to get involved. 

  • Simply talking to your friends, family and doctors is probably the best way. 
  • If you are on Facebook or Twitter, combine social networking with Celiac Disease awareness. 
  • Help support 1in133’s mission to raise awareness about gluten-free food labeling.
  • Join the mailing list at NFCA – the National Foundation for Celiac Awareness.

May is Celiac Disease Awareness Month!  Educate, educate, educate!  That is my new motto.  The more people that know, the more people that get diagnosed (and no longer suffer), the better it is for everyone!!  If you are dining out and get glutened or strange looks when you mention gluten-free, educate the restaurant and staff.  Make sure to let the management know if you do get sick – this will help others who go in to dine there on the gluten-free diet.  Most restaurants are very willing (and I say most, because we all know that there are those out there that really don’t care) to learn and do what they can to make sure you are as safe as can be.  Educate the stores where you shop – ask for them to carry your favorite gluten-free products if they don’t.  If your doctor or other medical professional seems behind the times, try to educate them as well and if they are unwilling, move on. 

What are you doing to help spread the word?

5 comments to Missing Something

  • Kim, you're right, celiac should be at the top of the list! And you're right that the listing was driven by the consideration on medical conditions that could be treated with drugs. How wonderful it is that we don't need a drug to treat celiac/gluten intolerance and even gluten sensitivity (well, except for the related conditions that often develop from untreated gluten issues, like hypothyroidism). Two conditions that were cited on the chart, Crohn's and ulcerative colitis, are low in occurrence compared to celiac. The 1in133.org site has a very helpful listing showing celiac occurrence in comparison to other illnesses, including those two. It can be seen here: http://www.1in133.org/info/ And sometimes those two conditions and others cited can be associated with celiac, misdiagnoses of celiac, or improved/relieved with a gluten-free diet. Thanks for spreading the word, dear! 97% of those with celiac (and far more with non-celiac gluten issues) being undiagnosed is way too many!

    Shirley

  • Kim,

    So funny that you should post this today. I just got back from the neurologist's office. When I was there last time,I asked the PA if he thought my neurological issues might be caused by my celiac disease. The PA said that he didn't know much about celiac and should "probably do some research". So, this visit, I went in there with three articles on celiac and the connection to small fiber neuropathy. He took the folder, scanned through it, and handed it back to me. I told him he could keep it and he said, "well, I can look that stuff up myself". He told me to keep on my medication and come back in three months. Basically, he couldn't care less. So much for me trying to spread the word. Maybe I'll have better luck at my gastro doc later this week? *sigh*

  • Lisa–I lead a gluten-free support group and one of my members who was diagnosed with celiac 2 years ago has also been diagnosed with small fiber neuropathy. She started experiencing the symptoms almost the day she went gluten free.. I just took a very quick peek at your blog and think your stories are very similar. She was told that going on the gluten-free diet likely triggered her small fiber neuropathy. She also said this occurrence is mentioned very briefly in Dr. Green's book. If you'd like to connect with her, please email me via the link on my blog (glutenfreeeasily.com). BTW, her name is Lisa, too. It might be helpful for your both to talk to someone else who understands what you are going through. And finally, it's pretty sad that your doctor was not willing to take the info from you. I've encountered the same numerous times unfortunately. It's clear they don't know what they need to, but most are unwilling to accept the info from a patient. :-(

    Best,

    Shirley

  • Lisa Jo

    I just found out that Celiac is the cause of my seizures! It was great to finally find out but the sad thing is it took 3yrs to find out what caused mine and my Reg Doctor is the onne to dignose me not my Nuro doc……sigh

  • Kim

    @Lisa – I would find a new doctor, one who will listen to you.

    @Lisa Jo – I am glad that you finally figured it out!

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