Celiac Disease or Non-Celiac Gluten Sensitivity: Which One is It?

Celiac Disease Awareness Month

I am finally posting this after working on some of it off and on for the past month.  I have been busy working, possibly making big changes in our lives and doing other normal every day things. 

I have wanted to contribute more to this very important month, Celiac Awareness Month, but life took over.  I have written a bit of a book...hopefully it flows smoothly.  I am tired as we have company in town....3 ~ 20 somethings in my house and they have kept me up the past couple of nights chatting.  I am posting this anyways....so if you make it through and can understand ... bless you!  It contains a lot of thoughts I have on the path Gluten is taking in the World, the Internet, etc.

I think my letter sizing is off some .... blogger is getting on my nerves ..... so again if you make it through .... Awesome!

 

Recent Gluten Free Events

Last week was a lively one for those in the celiac disease and gluten intolerant community.  Dominos Pizza released a gluten free pizza crust and everyone went wild.  Domino’s stated that it was not safe for those with Celiac Disease and on Twitter, they responded to several who were concerned with the safety of the pizza with, “The NFCA (@CeliacAwareness) estimates 18+ mil w/Gluten Sensitivity. This isn’t for everyone, but provides option for many.”   But who?  Who exactly is this providing options for?

The Internet is active with articles and blog posts about people who have figured out that gluten is an issue for them:  They are The Gluten Sensitive. When I come across articles such as these I am happy to say the least for them.  I know personally what it feels like to bounce from specialist to specialist with no answers given. Some eventually find a great doctor(s) that help them figure it out. Others have discovered on their own that gluten is causing health problems for them and they cut it out without further testing as testing would require reintroduction to gluten. They are not willing to go through any more agony. 

Many will tell you that is fine with them:  Feeling Alive vs. On Death’s Door ….well, Who would want to go back?

Yet, there are also hundreds of articles discussing the importance of being tested for celiac disease: 

“Don’t cut gluten out of your diet until you are tested.” 

 “It’s very important for you to continue eating gluten to be tested accurately.”

 

Once gluten is cut out, diagnosing celiac disease goes out the door.  You must be eating it regularly and for approximately 4-6 weeks to have testing possibly show positive results.  If you have cut it out some doctors may recommend a gluten challenge for testing, but this is not always recommended as it may cause more damage. Patients who have been following a gluten-free diet should not reintroduce gluten into their diet without talking to their physician.

Beth Israel Deaconess Medical Center has provided thorough information on celiac disease, testing, and follow up.  More detailed information on testing can be found here. 

The Story of the Non-Tested

Often gluten issues have to be figured out by the individual. 

General doctors know so little about celiac disease and even less concerning non-celiac gluten intolerance.  They don’t realize symptoms such as dizziness, anxiety, lower back pain, arthritis, headaches or vitamin deficiencies could be due to Gluten.

Often The Internet becomes a tool  in figuring it out. Thankfully there are people blogging and discussing all over the Internet their symptoms and they are reaching and helping many, many people.

If someone is able to figure out they have a gluten issue...often they have been feeling bad for quite some time, they have also been told nothing is wrong with them, that all tests came back fine (except the blood panel test because it was not considered), that it is in your head, and all your issues can’t be linked together, yada, yada.  Medicine may be prescribed for pain, upset stomaches, acid reflux and even depression/anxiety.


The uninsured are also at risk of not being diagnosed due to not being able to afford the tests for accurate celiac disease diagnosis.

 

Concerns:

If you do not get tested many feel you have created an issue:

1.      How strict do you have to be on your diet?  If you have celiac disease you would have to avoid all wheat, rye, barley and some oats for the rest of your life.  Presently there is no known cure other than eating gluten free.  Celiac disease is a life long illness and involves other parts of the body. If you consume any gluten you put yourself at risk for developing other autoimmune diseases and increase your risk for developing cancer, even with accidentally getting small amounts of gluten once a month (think eating out and cross contamination) damage could continue. 

2.       There are other illnesses that could be missed if no testing is performed. Some other diseases can improve by cutting out gluten, but it could be very important to be diagnosed prior to trying the diet.  It is also important to have nutritional testing completed to see if you are deficient in any areas as well as a bone density test.  Celiac disease can cause deficiencies in both of these areas.

These concerns are valid and testing sounds simple enough, but false negatives are not uncommon. False negatives are reported in blood panel testing and in endoscopic biopsies. A doctor could have taken samples in places not damaged or you could have already been playing with your diet leading to healing. I have also read this possibility too.... maybe they caught it right at the beginning so no damage had been done yet.

False Negatives Run Rampant When Testing for Celiac Disease

Websites with information and discussions:

1.     If someone is IgA deficient, they may have a false negative result to their EMA or 
        tTG tests requiring different tests.  

       

 

2.     There are occasional individuals whose IgA-tTG results may be misleading.

3.     Up to 5% of patients with celiac disease may have a false negative blood test. 

4.    The American Celiac Disease Alliance discusses here false negatives on blood work.

5.    A discussion on Celiac.com concerning  rates of false negatives – possibly as high

        as 20-30%.

6.   A discussion on The National Examiner about those testing negative, but improving on a gluten free diet. Are they celiac or gluten intolerant?  If gluten intolerant could they be celiac eventually if not having gone gluten free? 

7.   A discussion on Celiac.com discussing negative test results and frustrations of doctors not understanding testing or symptoms. 

 

 

 

So What??

So what if you have been tested and received negative results and went gluten free any way.

Or you did an elimination diet and realized gluten was not good for you and you won’t go back to eating it for testing.

The question you need to ask yourself and your doctor is this:  How strict do I need to be?

Answers you may receive:  You may be led to believe that you don’t need to be completely strict with your diet. Your doctor may tell you this, your family may coax you into having some because you “don’t have celiac disease” and you may read disclaimers such as by Domino’s Pizza (having also received the now Controversial "Amber Designation" from the NFCA now retracted)  or Jason’s Deli which state if you are gluten intolerant and not celiac this food may not be ok for you to consume.

You should consider this:  If you don’t know if you have Celiac Disease, but significantly improve when gluten is removed from your diet, you should still consider the huge possibility that with not knowing if it is celiac disease you should definitely avoid all.  If you have Celiac Disease you must avoid all gluten. If you have celiac disease a crumb can cause much damage.

And honestly, shouldn’t you be listening to your body?  What was it telling you before you realized you needed to cut it out?  I am guessing in more ways than one it was crying out, “Poison”.

Non-Celiac Gluten Sensitive

If you have not been diagnosed with Celiac Disease either through negative test results or no testing  ~  and do have gluten issues you now are considered to be “Non-Celiac Gluten Sensitive”.

“Celiac Disease vs. Non-Celiac Gluten Sensitivity” has become a huge discussion between researchers, doctors and within the Celiac/Gluten Intolerant communities. Doctors and Researchers are currently studying the differences and the vast amounts of similarities.

Many doctors feel at this point if you fall below celiac disease you may tolerate some gluten.  How can a doctor make this judgement? There may be no damage in the gut, but I am certain damage is happening in other places: joints, memory, major organs, etc.

Non-Celiac Gluten Sensitivity  has gained a considerable amount of clout in the past few years, but it is important for everyone to know that it is where celiac disease was 30 years ago.  There is still a great deal unknown  about it. 

While researchers are still trying to figure it all out, the medical community desperately needs the following:  

1. Education for doctors in diagnosing and treating Celiac Disease and Non-Celiac Gluten Intolerance (presently this can only be diagnosed from negative test results followed by an elimination/reintroduction gluten diet).

2. Education in understanding the high false negatives and that for those diagnosed with Non-Celiac Gluten Intolerance one should take avoidance at this time seriously. When there is no sure answer – then why tell your patients you may be able to have a little?


To me it is obvious, gluten is poison.  I don’t want a little bite or a crumb.  There is no wishy washiness coming out of me even after having a Wishy Washy doctor in my life. 

Luckily we have experts such as Dr. Alessio Fasano who feels strongly about those with Non-Celiac Gluten Intolerance taking their diet seriously.  Concerning Domino's Pizza and who it is safe for read his statement here.

You can also hear Dr. Fasano on May 17  on Jules Gluten Free Radio Broadcast. 

Hopes for all the Gluten Intolerant

1.    Better testing methods will be discovered to diagnose and to monitor people's health for Celiac Disease and Non-Celiac Gluten Intolerance. Maybe even those who have not been tested should be monitored just like those who have been diagnosed with Celiac disease:  retesting for tTg and endoscopies when warranted as well as realizing that vitamin deficiencies should be tested for and continuously monitored.

2.  More restaurants will be educated so that we can eat safely more often as well as healthy.

3.  Less people, doctors, media and stars making light of all the above.

4.  Understanding that Elimination Diets are very effective tests and at this time for those getting negative results this is the best test.  It is The Only Test to diagnose Non-Celiac Gluten Sensitivity at this time.

My Daughter's Rendition of Me for Mother's Day 2012

As for me ~ This is no fad. While I have no official diagnosis, I am one who takes avoidance of gluten very seriously, because I feel horrible when it is in my system. I felt like I was dying at times. I have other autoimmune issues and now multiple food allergies. I have a myriad of symptoms some dealing with my stomach and others that are not.

I have made the choice to not know.

I could have Celiac Disease and if I do it is pertinent that I avoid it at all costs  my Body's Signals were the Only Test I needed.