It's National Celiac Awareness Day!

Today is National Celiac Disease Awareness Day.  

All of us who suffer from celiac disease before getting diagnosed may not have even been aware that there was a day dedicated to this.  

According to the Celiac Sprue Association Sept. 13th was chosen for this day because it is the birth date of Dr. Samuel Gee, M.D. a physician and pediatrician.  Dr. Gee is the first physician that is credited with being the first to identify the link between celiac disease and diet.  One of his famous quotes is: "If the patient can be cured at all, it must be by means of diet."


So i guess we can be very thankful to Dr. Gee because if it weren't for that important link between celiac and diet more of us would be way sicker then we are.

Of course those of us who suffer from this disease know that it is way more complex then it sounds.  We also know that doctors themselves can't even tell us everything about celiac because of their lack of education when it comes to this disease.  The education given to these doctors in medical school is to suspect celiac disease in a child suffering from diarrhea, abdominal pain and bloating.  As we know it's much more complicated than this.

Like me, so many of us are getting this disease in our adult years.  Many deal with constipation, itchy rashes, hair loss, bloating etc.  Or many might have just one complaint being neuropathy, tingling in their hands and feet.  It becomes way more complicated and it masks itself as other disorders.  Unfortunately many of us do develop other disorders as well.  Then there are those that have no symptoms at all.

Dr. Green the director of the Celiac Disease Center at Columbia University in NYC was asked in an interview why it is so hard to get doctors to realize that celiac disease could be the culprit for making patients so sick and this is how he responded:

<DGF: Why is it still difficult to get doctors in the U.S. to consider that celiac disease could be the culprit making patients sick—especially the ones with IBS symptomsthat don’t resolve with IBS treatments?

Dr. Green: There are a couple of reasons, actually. Most doctors here are not prominently taught about celiac disease in medical school or in post-graduate education. The latter is often funded by big pharmaceutical companies, and none of them presently offer a medication to treat celiac disease. We really can’t blame the doctors totally because most of them are not going to look for something in their patients that they were taught is extremely rare. Of course, celiac disease is not rare at all, but many doctors still think that it is.>

I got this information from the www.delightglutenfree.com website.  Read the entire article here. It is very informative.

I have to give my experience with a doctor very briefly: 

After i had been diagnosed and had seen the doctors at Jefferson University Hospital at the Celiac Center in Pennsylvania i was trying to get help for my brother who lives a few states away in Ohio.  He was in his doctors office at the time and was asking him to test him for this disease.  My brother couldn't remember the names of the tests so he called me while he was with his doctor and put me on the phone to give him the names of the tests that the doctors at Jefferson had done on me. 

The doctor was not polite at all.  He kept insisting that my brother did not have celiac because he didn't have diarrhea.  I explained to him that i didn't either in fact i suffered from constipation.  I tried to ask him if he would at least test him to see if he carried the gene for this disease.  He said there was no such test. Although i explained that they had just finished these tests on me and found that i carry the gene and i gave him the name of the test he still protested.  Now i'm not a doctor and i understand that many of them have very big egos but i wasn't trying to belittle him in any way i was just trying to help my brother get the proper help he needed.   Unfortunately there are many doctors out there with this same attitude and if this is the case for you i encourage you, just as i did for my brother, to find a new doctor.  Keep looking until you find one that listens!

What can we do to help educate people?  Well there are several things we can do and they don't take a lot of effort.  

It's important to start with our own family and make sure that they have all been tested for this disease.  We can share interesting articles on celiac disease with family and friends through email or social networks. We can email local grocery stores in our area and request that they get more trusted gluten free items in their stores.  Talk to your doctor openly about what you have learned and print out specific articles you have found helpful or that you may have questions on.  Even if you just get the conversation going it is better than them just sending you out the door after diagnosis saying go eat gluten free and see me in a few months.  

There is quite a bit of downloadable guides and articles on the www.celiaccentral.org website that you can use for yourself as well as for your childrens schools.

Another way you can do your part is just to educate those around you.  Yes more and more people are becoming aware of Celiac Disease and being gluten free but they are still very uneducated about it.  You can educate and not bombard people with information with the smallest of phrases such as:  "I suffer from an auto-immune disorder it's not an allergy" ,  "Gluten is a protein that causes damage to my intestines", "I have to be extremely careful to avoid gluten because this disease can lead to developing cancer down the road."  

You don't necessarilly have to give an entire speech but just saying a short phrase that shows the seriousness of the disease will help people to see that this isn't a fad for you and it will give them some much needed information that will leave them thinking.  Who knows maybe they will even go home and do some of their own research,  that is what has happened to me at times.  

Well i hope that this article was enlightening and gave you some encouragement to go out in the world and educate others or even in the very least i hope i encouraged you to educate yourself some more on this disease.  I have found that there is much to learn.  

Please tweet this article to others so that we can raise more awareness on this complex disease.  Thank you!

Stay Healthy!!

References:  celiac sprue association website

                    celiaccentral.org

                    delightglutenfree.com

Why Aren't Restaurants Taking Celiacs Seriously?

Check out my latest experience,

I know i had said that my next post would be more about the thyroid but i just had to share what happened to me over the weekend while going out for breakfast at a place that offered a gluten free items.

I have been to this particular restaurant a couple times before but only for breakfast.  They have an extensive breakfast menu including pancakes and waffles and they state on the menu that they can make anything gluten free.

Well, being that i am a very sensitive celiac i am always very careful and most of the time i call and inquire ahead about practices and equipment.  Although this hadn't been my first time to this place it was the first time i noticed they offered gluten free waffles.  (I always check out menus online before going anywhere.)

I called and spoke with someone in the kitchen.  I told them my situation and asked if they had a separate waffle maker for gluten free waffles or if they shared one with gluten waffles.  He said "yes".  Ok so i was confused by this answer.  I asked "which one?" "you have one just for gluten free waffles?"  He said "yes."
I said "ok well i have to be very careful so that's why i'm inquiring."  He said "just let your server know your concerns when you get here and she will alert the kitchen."

That was the end of that convo.   His whole attitude on the phone was one of irritation and just saying what i wanted to hear to get me off the phone.  Now i have to say that i did not get sick this visit.  I ended up getting pancakes with no syrup.  Here's why:  When i told the server what i was told about the separate waffle maker just for gluten free waffles she said that wasn't true and would double check.  She came back from talking to the chef and said they only have one waffle maker and this is what she said the chef said: "The chef said that he has either read or heard that gluten burns off at 400 degrees F. and this is what they cook the waffles at.  So even though they do share the waffle maker with gluten containing waffles it would be safe for celiacs and he has never had anyone complain about getting sick."

Needless to say this enfuriated me but i just politely said "well then i'm going to need another minute to decide because i am very sensitive to gluten and i would get sick if i ate the waffles."  I also inquired about the vermont maple syrup that they offered but the server also told me she didn't recommend it because she sees crumbs around the rim of the container that they pour it from.  She did write down the ingredients for the syrup that was kept at the table but informed me that it was shared between tables, so i just decided to play it safe and go without.  I've seen kids putting syrup on pancakes and they touch all over the bottle and sometimes even touch the tip to their pancakes.  I may be being a little paranoid but after all i've suffered i'd rather be healthy and paranoid then take chances and get sick.

Well, i did get the pancakes with blueberries and walnuts and had them without syrup and did not get sick thankfully.  Unfortunately if i want waffles i will have to make them at home myself.

What was so irritating about the experience was the ignorance of the chef.  Who told him or where did he read that gluten burns off at 400degrees?  How are they taking the waffles off of the machine?  Could they be accidentally scratching it and allowing gluten to get into the pores? How well are they cleaning it in between gluten and non gluten waffles?  There's just too many variables for me.   I mean if I'm not cooking a pizza in an oven that once had gluten in it at 400 degrees then why would i want my gluten free waffle poured directly on a gluten shared surface that has all kinds of potential to get me sick.

I was reading jennifersway.org.  Jennifer Esposito's blog and she had posted her experience at a restaurant where she was told by the server that they just get so many people wanting gluten free and not everyone can be celiac.  So it seems to me that they just don't feel the need to take it seriously.

These places assume that if people don't call and complain or if they don't see you keel over right away that you must be exaggerating, being picky or just doing a fad diet.  I have to agree that all these people who have jumped on the gluten free band wagon has made it very hard for celiacs.  On the other hand i have to say that going gluten free isn't easy and if someone is doing it because they feel noticeably better than there is a good chance it's because they have some sort of sensitiviy or allergy to it that they didn't realize.  Also, after what i've learned about wheat as a whole it is showing itself to be something that us as a human race are having difficulties digesting because of the hybridization of wheat and the lack of enzymes we need to digest it.  I recommend you check out my post (celiac disease issues & helpful tips).  

Having said all of that i believe it is very important, actually vital to us celiacs, that restaurants go through the proper training on gluten and celiac disease.  Ignorance shouldn't be acceptable.  These restaurants may not want to pay for their kitchen and wait staff to be trained but they should realize that if they were to go to these lengths for us we would trust them more and definitely patronize their establishments more often.  I know many celiacs that would even pay any extra markup if they knew they were able to eat as worry free as possible.  Of course we are always a little bit worried and we should always be extra careful but when we know that there has been training that has taken place it is a little relieving to us.  Plus if the food is good we'll keep coming back again and again.                                              

I have to ask the restaurant business, What could it hurt, whether it be a gluten free eater that does it for diet or gluten free for celiac, that when you get this request just be extra careful period.  Why not treat everyone that requests gluten free as if they could get deathly ill?  It never hurts to be too careful, right?

I would also like to encourage every celiac or gluten sensitive/allergy person that does get sick from eating at an establishment please call and report it.  I know it's easy to get frustrated and just let it go especially when you feel crappy for the next few weeks but it's vital for all those fighting this that you  let these restaurants know they are messing with your health.  Maybe if they hear how much we are getting sick they will be motivated to do something about their practices.  Maybe if they see that we won't stand for their ignorance and we just won't go to their place of business they will see how much money they are losing and change what they are doing?

 
So next time you get sick at a restaurant call and complain make your case known.  Tell them you won't return unless they show you that they can be trusted.  Write a review to help your fellow celiac and gluten sensitive/allergy eaters.   On the other hand, next time you get great service and they take the time to make you feel comfortable and you can tell they are going the extra mile, why not thank them by tweeting about your experience, write a great review on them, send them a thank you note.  You would be surprised what these seemingly small details will do to make a difference in not only your dining experience but your fellow celiac/gluten sensitive friends as well.

Please tweet this article to your followers so that we can show people and restaurant owners that this subject is very important to us!

Thanks for reading!