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

Celiac Disease Signs & Symptoms

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First let's start by defining what Celiac disease is:  

It is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food.   Gluten is a protein found in wheat, barely, rye, spelt and sometimes oats can be cross-contaminated with gluten from being grown near wheat fields. When eating foods containing gluten our immune system responds by damaging the small intestine.   It does this by damaging the villi contained within the intestinal wall.  Think of them like little hairs that normally stand straight up and absorb the nutrients released from our food and then send the nutrients into the bloodstream.  

In the case of Celiac disease though, when gluten enters the body the body goes on high alert and attacks in order to save itself.  Unfortunately what it's actually doing is attacking itself, damaging those beautiful hard working villi.  Sometimes they become completely destroyed (this happens more when there has been very long term damage) other times the villi is damaged.  Those hairlike structures that normally start to stand straight up start folding over and not working properly.  The tips of those hairlike villi are also responsible for absorbing dairy and when damaged they can't do it anymore, and we wonder why many of us have dairy issues.  The damage to these villi also cause a person to become malnourished regardless of the quantity of food eaten.  We can seem soo hungry all the time but not feel well, have no energy, even not gain weight although we eat as much as we can, and this can all be from malnourishment.  Of course there are many other factors that help to cause many of those symptoms but a lot of it is from this. 

The damage done to our intestine can take a long while to heal in some cases up to two years unfortunately.  Something to keep in mind though is to remember that this damage in most cases has taken place over many years, so it stands to reason it would take a long while to heal.  Thankfully starting to eat gluten free gets you on your way to recovery.  As you deal with this disease you will see that being that this is an autoimmune disorder and the fact that we are all different, healing differs from one individual to the next.  Some may begin to heal more quickly and others will find that there has been damage to other organs in the body and enzymes that have been destroyed.   Which will take some more time and patience on our part and our physicians part to figure out just what else has gone wrong and how to begin to fix it.   This is especially when it is helpful to have support from our family and friends. Going through this is very difficult for the one suffering all of the symptoms below.  It affects our moods, energy and even zest for life at times.  We need to have patience with ourselves.  Our family and friends need to be patient, kind, loving and understanding with us.  Be our cheerleaders not mockers or murmerers.  Being supportive of your loved ones situation goes a long way in their healing process, it's important to recognize this.  More on support in a later post.

The body’s own immune system causes the damage in celiac disease because of this it is considered an autoimmune disorder. It is also classified as a disease of malabsorption because nutrients are not absorbed. Celiac disease is also known as celiac sprue, nontropical sprue, and gluten-sensitive enteropathy.

This disease is considered a genetic disease.  It can be inherited from parents either one or both.  The gene can lay dormant for years and then suddenly be triggered or become active for the first time after surgery, pregnancy, childbirth, viral infection or severe emotional stress.

Being that this disease is considered a genetic disease it is important that if you or a family member has been diagnosed your other family members, especially immediate family, should most definitley get checked for it as well.  

Celiac Disease Symptoms 

This list can also be found on the celiac.org website.  There is said to be at least 300 or more symptoms to this disease.  Even with all of that there are still some people who suffer from this disease and never have one of these symptoms.  

SYMPTOMS MAY INCLUDE:

• Abdominal cramping, intestinal gas
• Acid Reflux
• Distention and bloating of the stomach
• Chronic diarrhea or constipation (or both) (they may misdiagnose you with IBS)
• Fatty stools
• Anemia 
• Unexplained weight loss with large appetite (In my case this was when i had become so sick i was malnourished) or weight gain (In my case this seemed to happen when the disease became active)

OTHER SYMPTOMS:

• Dental enamel defects
• Osteopenia (another thing i developed from malnourishment and possibly from thyroid med they put me on), osteoporosis
• Bone or joint pain (they may try and misdiagnose you with fibromyalgia)
• Fatigue, weakness and lack of energy (they may misdiagnose you with chronic fatigue)
• Infertility – male/female
• Depression (they may say your bi-polar or just chronically depressed and treat with meds)
• Mouth ulcers
• Delayed puberty 
• Tingling or numbness in hands or feet (they may try and say you have carpal tunnel)
• Migraine headaches 

SOME LONG-TERM CONDITIONS THAT CAN RESULT IF LEFT UNTREATED:

• Iron deficiency anemia
• Early onset osteoporosis or osteopenia
• Vitamin K deficiency
• Vitamin and mineral deficiencies
• Central and peripheral nervous system disorders - usually because of unsuspected nutrient deficiencies
• Pancreatic insufficiency (many of us have diabetes type I or II)
• Intestinal lymphomas and other GI cancers (malignancies)- This alone should warrant further looking into!
• Gall bladder problems
• Neurological problems

I had many of these symptoms throughout the seven years that I sought out help from different doctors. I especially suffered from horrible worsening acid reflux and doctors fixed this nasty little symptom by more and more antacids that just made matters worse by blocking my very much needed B vitamins. UGH. 

None of them ever put it together that I had Celiac.  Instead they treated the symptoms as they often do. Make sure when seeking out medical help that you are thorough when explaining your symptoms and make sure that they look at you as a whole person and not as parts.  Ask for a Celiac Sprue blood test, check out my page with specific blood tests to ask for.  If your doctor doesn't listen to your requests or concerns, FIND ANOTHER DOCTOR WHO DOES.  DO NOT GIVE UP.  THIS LITERALLY CAN MEAN THE DIFFERENCE BETWEEN YOUR LIFE AND DEATH!

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