Wednesday, February 11, 2015

Celiac Frustration...please don't mock Gluten Free

Lately, I've been feeling a lot of frustration.  So many are choosing to be Gluten Free for simply diet reasons, and this in turn is causing major problems for Celiacs.  Just in case you aren't aware or familiar with Celiac Disease,  I'm quoting the NFCA since they explain it best:  "Celiac disease is a genetic autoimmune disease that damages the villi of the small intestine and interferes with absorption of nutrients from food. What does this mean? Essentially the body is attacking itself every time a person with celiac consumes gluten.  Celiac disease is triggered by consumption of the protein called gluten, which is found in wheat, barley and rye. When people with celiac disease eat foods containing gluten, their immune system responds by damaging the finger-like villi of the small intestine. When the villi become damaged, the body is unable to absorb nutrients into the bloodstream, which can lead to malnourishment.  Left untreated, people with celiac disease can develop further complications such as other autoimmune diseases, osteoporosis, thyroid disease, and cancer."   Not only does being left untreated cause complication -but, so does frequent contamination.  

Recently, the Gluten Free diet has been being mocked: which makes it tough for a Celiac to be taken seriously.  More and more you see commercials and tv host mocking gluten free.  For example, Ford Fiesta is advertised as being Gluten Free.  Really?!?!  

In addition, there was a big controversy with a Nascar commercial that was supposed to air referring to those who are gluten free being soft.   Thanks to the Gluten Dude making a petition & being such an advocate, and a strong Celiac community, Nascar changed the commercial before airing it during the Super Bowl.  All the mocking Gluten Free gets very frustrating, and is no joke for a Celiac. 

Unfortunately, Celiacs don't have a choice...the only medical treatment is adhering 100% to a Gluten Free diet.  Not only do we have to adhere to the gluten free diet, we have to take extra precautions to ensure food is safe, and free of cross contamination.  Since my diagnosis in 2003, every social setting brings me great anxiety whether it's a family function, eating out...everything involves food!!  Now that the fad diet has brought such a damper to it all, its even worse!  Since my diagnosis, the food has gotten much better -however, social setting have gotten worse.  Anytime I go out to eat, at the select few places I truly trust, I still stress I have an "allergy" and not on the fad diet.  If the proper steps are not taken, I will get very sick...even from a crumb.  

So many don't realize all the precautions a Celiac needs for food preparations.  Our house is 100% Gluten Free, and my true only safe haven!  Not all Celiacs live in a 100% safe haven, and live in a mixed home where extra precautions are required. One of the toughest situations is going to someone else's house for breakfast/lunch/dinner.  In a non-gluten free kitchen there are so many contamination risks -such as, cutting board, pans, condiments, and especially reading all labels.  For example, simply not using a fresh mayo jar could make a Celiac sick.  Why you ask?  When most make a sandwich, they wipe the extra mayo on the knife back into the jar...putting bread crumbs in the mayo.  Yup...those little crumbs would make a Celiac very sick.  The NFCA put tougher a fantastic printable guide for Entertaining a Guest with Celiac Disease.   Simply, click on the blue/purple underlined test to take a look.  Please keep in mind, if you ever invite a Celiac over for dinner, please don't ever get offended if they turn the offer down.  There is a lot of anxiety that comes along with food.  My biggest piece of advise is to invite them to help prepare the meal then you can both work together to ensure a safe meal is made, and all can enjoy!  

Celiac Disease at times takes a long time to diagnose because the symptoms vary and are such a wide range.  For my diagnosis, I was extremely lucky that my PCP suspected it after my initial blood work...and even more lucky since we were in a time crunch due to my wedding being 2-weeks away!  My PCP actually told me she was told to know about Celiac Disease because it would be on her boards -but, she would never see it.  Thank goodness she was very informed, or my wedding day would have been a miserable day! 

Just to give you a little back ground on my story, and how my diagnosis truly saved my is my story:
In 2002, I thought all my gastro problems would be fixed after I had my gallbladder removed...only now I know the surgery triggered my Celiac Gene!  In 2003, weeks before my wedding, I reached out to my PCP in desperation.  At the time, I was making bathroom runs 20 times a day, had a distended stomach, severe fatigue (needed to nap after lunch, and dinner time),  muscle cramps in my calves that would bring me to tears, joint pain, migraines, monthly bouts of iritis, cold sores (huge), and rapidly loosing weight.  My initial blood work showed I was severely malnourished, and severely anemic; which led my PCP to test me for Celiac Disease.  Days later she called to inform me the test did indeed come back positive -so, off to the internet I went to research this "disease" and this new diet I had to follow.  My having monthly bouts of iritis, my ophthalmologist suspected some type of autoimmune disease -but, at the time I didn't have insurance due to being a recent college grad - so, I was unable to afford all the extensive testing...hence, yet again why I was so lucky my PCP figured all out simply with blood work!  Every Celiac has a different story, range of symptoms, and some even have no symptoms.  

My PCP and I decided to be rule breakers and start me on the Gluten Free Diet immediately since I wouldn't be able to get an appointment for the biopsy via endocope for a month.  To be properly diagnosed, you need a positive blood test and positive biopsy.  So, I'm technically not diagnosed by the book since by the time I had the biopsy it came back negative.  I know, we are rebels!!  Within a few days on being Gluten Free, I felt amazing, and it felt darn good not living in a bathroom!  It took me a while to figure out the Gluten Free diet -so, until I did, I went back to the basics of meat (with salt/pepper), fruits, veggies, and potatoes...and M&M's!  Almost 11 years ago, Gluten Free food wasn't nearly as good or accessible as it is today...and eating out didn't happen for me!  It was supposed to be the happiest time of my life, and instead I faced so many challenges -but, quickly got back to good health.  Instead of picking up the phone to order pizza, I had to quickly learn to cook for myself, and new hubby!  At the age of 26, I sure missed the conveniences of take out, and being spontaneous.  So many didn't understand the new life I had to live. Depression hit me quick...I was truly mourning the loss of gluten in my life, and yet so envious of friends and family for being able to be spontaneous in life.  Thankfully, I quickly realized there was no reason to be depressed, and how fortunate I was to have regained my health...and have ALL my symptoms disappear.  Not to mention, the Gluten Free diet is also my only medicine for my Crohn's disease, too.  Yup, I'm the lucky one that has both Celiac Disease & Crohns Disease.  But, on the other hand, so lucky that the Gluten Free diet is the only medicine for both.  

Don't get me wrong, just because I was diagnosed with Celiac almost 12 years ago, and Crohns almost 10 years ago, I still have many struggles.  At times, I'm depressed, and heightened more when I get contaminated.  Even at times, I avoid social settings and stay in my safe haven.  Social anxiety typically gets the best of me since food revolves around everything!  But, thanks to having an amazing support system around me, I pull though...relatively quickly!!
So, with all of this said, PLEASE no longer mock a Gluten Free diet for a Celiacs's literally saving our life.   For those on the fad diet, please keep on mind your actions can make a big complication for someone who medically needs it.  

For any further information about Celiac Disease, please take a moment to check out NFCA's website:


  1. I share your frustration with the way gluten free is being minimized and until this point, I was really liking your blog. I'm really hoping that you are not one of the "celiac snobs", as I term them, but you're so focused on celiac that I worry you are. I am officially diagnosed with Non Celiac Gluten Intolerance. My GF journey is a bit different from yours. Four years ago I was suffering from constant, intense joint pain. I was barely able to walk and reduced to using a wheelchair and electric scooter at stores. Pain killers did not affect the joint pain and I used to suffer no matter what I did. I saw a rheumatologist and was almost released from her care, until she saw the results a scan they did that showed that almost all of my joints were massively inflamed. It was assumed that I had RA or PA and I was treated with immunosuppresants for over 6 months before my system got bad enough to show the effects of vitamin deficiencies, most alarming was a twitching arm. I had the blood tests done and was told to go GF immediately. I didn't know at the time that it wasn't the best idea. I did not have any positive gluten blood results, but within a month of going gluten free I could almost walk normally. I never had the so-called gold standard biopsy done, so I'll never have a definitive diagnosis, so NCGI is my diagnosis. If I consume gluten, I get dizziness, joint pain, and a week of migraines and light sensitivity. However, since I have no faith in people believing me when I say I need to be gf, I always say celiac when I eat out. I also have run into many celiacs who treat my as a second class citizen of the gf world because I "only" have NCGI. My issue with gluten is just as real as any diagnosed celiac and you couldn't pay me to eat gluten. I have gone from being locked in a body wracked with pain and barely able to move to training to run a 5k. So please, don't discount those of us who cannot eat gluten but don't have that celiac label to attach to it.

  2. Trust me...I get both sides. My 5 year old is gluten intolerant and not a celiac...yet (she carries the gene). So, please know, I'm not a Celiac snob. Those who eat GF but don't commit make it tough for those who it impacts make it tough for us to be take serious...that's my frustration.

    1. Oh good. I was hoping so. Unfortunately, google cut me off...and for some reason doesn't seem to want me to finish my comment. I'm trying again, and currently really hating blogspot and google.:)
      continued (again) since it cut me off and has refused to post the last 2 attempts....I hope that my frustration with the gf fad peeps, the celiac snobs, and the campaign to discredit the NCGI diagnosis altogether is coloring the way I am reading this and I heartily apologize if it did. I share your frustration, and hate the amount of fear and anxiety it causes in my own life.

    2. Not to mention, I may be diagnosed Celiac -but, it wasn't by the books! Due to my wedding being a week away I went GF upon positive blood test -so, my biopsy was negative! Either way, GF has changed the health of both of our cheers to good GF health!