What Your Doctor May Not Know About Celiac and Gluten Sensitivity

Talking to my friends and family that are MD’s, I have found out something incredibly disturbing. Ok, let’s face it. If you really talk to MD’s about food and disease in any format.. but especially when they are not “on”… you will most definitely find out some disturbing things.

 

But this was something I think people should know before they go and get tested for Celiac Disease. It also impacts those with Gluten Sensitivity or Gluten Related disorders and also with autoimmunity, neurological disorders, and even Type 2 diabetes.

But today, I am here to talk specifically about Celiac Disease and Gluten Sensitivity. But if you have any of those above diseases, I am including you in with the “gluten sensitive” group. So yes, this means you. And know this: if you had Celiac disease, then you are likely to not know it.

So back to the disturbing news: At best, a doctor in medical school spends between 1 and 15 minutes being educated on Celiac Disease.  In their residency, the chance of being further educated on it are as slim as the chances of a person being diagnosed with it. Properly diagnosed. Which is slim to none.  In fact, 95% of those who are diagnosed are only diagnosed after a relative is diagnosed, as a part of the family screening process. This means that in this highly undiagnosed population, that only a small percentage of Celiac’s  that know they have this disease are tested because of their symptoms.

Before we get to what you need to know about Celiac and Gluten Sensitivty, lets start with the difference.  In this comparison, we will discuss the first thing your doctor may not know about celiac and gluten sensitivity:

The difference between Celiac and Gluten Sensitivity

This difference is important to know and clarify before we really dig into what you really need to know. Celiac is a disease where the body attacks itself when gluten (a protein in wheat, rye, barley and spelt) is introduced into the system.  This concludes most of what your doctor knows.  What your doctor may not know is that the process of self-attack can be triggered by other foods or substances (we call these cross-reactives, see below).  To be diagnosed as Celiac, there must be a specific type of damage to the small intestine.  When this has happened, it is said that the “celiac gene” has been  “turned on”.  This damage always starts with gluten. For some, this is the only trigger.  For some, this damage to the small intestine produces symptoms (there are over 100 symptoms) and for others there can be no symptoms at all.  For some individuals, symptoms will be triggered by multiple foods or substances that the body sees as similar to both gluten and parts of the body.  But the body will only attack itself if these foods are introduced into the body through eating, breathing and sometimes, the skin. Celiac Disease is thought to only attack the small intestines but can also affect the brain and skin.  For these reasons, it is associated with several neurological and skin disorders.

Gluten sensitivity is when you have all the symptoms, but do not have damage to the small intestine, at least not that specific type of damage.  This phenomena can occur either because you do not carry “the gene”.  However, gluten sensitivity can also happen  to an individual who does carry the gene before it gets “turned on” and starts to damage the intestine in that very specific way. How do you know if you are gluten sensitive? There is a 95% chance you are. (see below for details)

Before we continue, let me give an example of what a typical experience with an “expert” may look like for some.

When I became celiac in 2009, I didn’t bother with getting diagnosed.  Some agree with my decision and some say I should have gotten diagnosed. In hindsight, the main reason to get diagnosed is for validation and tax write off’s.  It can also be educational to know which gene you carry, although this part is rarely part of the diagnostic process. (Some genes carry extra risk and some are linked to specific related illnesses, like Multiple Sclerosis or Bipolar Disorder. More on these diseases and their relation to gluten sensitivity at a later date)

In 2014, When I was hospitalized with what I now know were gluten related symtpoms, I asked about being tested in case it was a part of the problem.  I was told there was no point in getting tested.  I then asked if I should gene test: He had to go and look up which genes to look for and then realized he had no access to the technology to test for these genes. (It was a blood test).  When he got back to me, he told me that he found that DQ2 and DQ8 were the two genes associated with Celiac. Mind you, this was a gastroenterologist: He is supposed to be the specialist that you go to to get diagnosed with Celiac.  And even he had to google basic answers.  To make matters worse: the information he gave me was wrong on the following accounts. So let me dispell some myths right away.

    1. DQ2 and DQ8 are not the only genes associated with Celiac Disease.  There is research telling us that DQ1, DQ7 and DQ9 are also associated with Celiac Disease. While 95% of Celiac Cases are those who carry one of those first 2 genes, that means that the other 5% do not carry that gene.  Here is an article that discusses these genes in detail. It mentions the DQ1, DQ7, an DQ9 gene, specifically, in addition to the DQ2 and DQ8 genes.
      1. Let’s do the math here. if one percent of the population are estimated to have Celiac disease, then means that 3, 254,000 people have Celiac disease.  And yet, our doctors are not educated on this disease.  Even the “specialists”.
      2. So let’s do some more math. If 5 % of that 3,254,000 people do not carry the DQ2 or DQ8 gene, that means that 162,700 people have Celiac and carry one of the other genes.  While this number is not as impressive as over 3 million, it means that those that carry these genes not only will have a hard time getting diagnosed, but the specialist won’t understand that these can carry unique risks and complications. This deficit of understanding in our medical community leads to a group of people with either gene set, unable to protect themselves in regards to their health.  This means a patient will be severely handicapped in making informed decisions for their own health.


  1. Now let’s talk about related genes. Warning: this is about to blow your mind. So make sure you are sitting down.
    1. The latest research has been looking into Celiac and Non-Celiac gluten Sensitivity.  It has discovered that there are genes surrounding these other aforementioned genes. If you include the genes above plus the ones in succcession, you would basically have DQ1 through DQ9. Let me be clear, this is DQ1, DQ2, DQ3, DQ4, DQ5, DQ6, DQ8, and DQ9. Yes, all of them.   For those who are experiencing gluten sensitivity but not Celiac disease, this means you would have all the symptoms, but not the damage to the intestines. It is unknown if there is any damage being done but it is common to find that inflammation decreases when gluten is removed from the diet.  In recent years, leaky gut syndrome (which is partially caused by and associated with gluten consumption) has been linked with every major disease from Autoimmune, Alzheimers, ADHD, Bipolar, Schizophrenia, OCD, Parkinson’s, Alzheimers, Cancer, Type 2 Diabetes and more.  This suggests that even though there are not the consequences associated directly with Celiac Disease, that the gluten is still causing inflammation and consequences that we may not be willing to accept if we know what we are choosing.
    2. 99 % of the population carries on of these genes. Yes, that means there is a 99% chance you are gluten sensitive. Let that sink in for a moment.
    3. Every person I know who has given up gluten reports a decrease in inflammation, especially gut inflammation.  Inflammation is what leads to disease formation. Gut inflammation is the first step towards neuro-inflammation.

Why you have symptoms on your gluten-free diet:

There are 3 reasons why going gluten free may not have improved your health:

  1. You are not gluten free enough.
    1. For some, the conventional standars for gluten “free” foods are not gluten free enough.  The label in the United States allows for up to 20ppm (that is parts per million) in a food. I know for a fact that there are loopholes in labeling to help a food “qualify”.  For example, by changing the serving size in a product they can change the ppm’s .  While this loophole doesn’t fit my ppm definition, I have heard companies discuss the daily serving and explain that the servings were the reason why it did not qualify. However, by having 1 or more foods that are 20 ppm, a sensitive person can consume way more than 20 “parts” in a day” by accident. For some, even 5ppm can cause symptoms.  and let’s be very clear: even with no “symptoms” you can still be Celiac, and still be accruing damage as a Celiac or as one of the 99% who are gluten sensitive.
  2. You are cross reacting to other foods.
    1. This is something that many doctors have absolutely no clue about. .  But let me assure you that this is a very real thing. Not only in my own case but in hundreds and thousands of others on elimination diets have discovered the same thing.  These who have discovered this are not all Celiac, either.  I suspect this cross reacting would take place in any gluten-related disorder such as Hashimotos, Eczema, Rheumatoid Arthritis, Sjogrens, Multiple Sclerosis, other Neurological Disorders, and more.
    2. The foods that cross react are Milk and Cheese ( milk and milk products are usually the first cross reactive food to lose and the most common), eggs, Potatoes, Tapioca/Cassava/Yuca (these are all the same plant), yeasts and fungi of all kinds (these are separate into categories but one can react to all categories) and all seeds and grains.  Here is a list of the 19 most common cross reactives, but make no mistake: you can react to many more foods that are not on this list.
  3. You have not addressed the consequences from previous exposures.
    1. There are many side affects to having a gluten exposure that can cause some longer-term symptoms. These side affects could be nutrient deficiencies, stress to the body, damage to the body and more.  This is not to say these things cannot be reversed, but you will need time and the right tools to accomplish the reversal of these consequences.

One more thing you need to know that  your doctor may not tell you:


  1. if you are diagnosed with Celiac disease, it means you have an autoimmune disease.  There is a common misconception that all you need to do is to go gluten free and then go on with your life.  This myth cannot be farther from the truth.  Once you have one autoimmune disease, you increase your chances of collecting others and also increase the chances of related diseases like Cancer and Neurological Disorders.  It is actually quite rare for someone to have only one autoimmune disease, but as there are literally over 100 autoimmune diseases, they are difficult to get diagnosed.  Many just don’t know where to look for the others. So to keep this from happening to you, it is important to know the following:
    1. If you are diagnosed with an autoimmune disease, you have something called leaky gut syndrome. If you are Celiac, then you have further gut complications on top of having leaky gut syndrome. Everyone who has an autoimmune has this syndrome and if they heal it, will always be prone to having it become “unhealed”, so you need to protect yourself always. If you have been diagnosed with Celiac or are gluten sensitive, have a related disorder, an autoimmune or neurological disease or other reason to suspect you have leaky gut syndrome, then seek help through a qualified professional to guide you on this journey.
    2. You are at risk for losing other foods through the cross reaction phenomena I talked about above. When you lose a food: you lose it forever. You never get it back.  Healing your gut can keep you from losing more foods, in addition to gaining more autoimmune diseases.
    3. You need to be diligent.  Even with no symptoms, even a little gluten can be doing harm to your body. Be as diligent as possible.  Sometimes this means being brave and asking someone extra questions to make sure your food is “safe”.  It can also mean having to say “no” to a food you really want and having something else to eat instead.

While this article covers the basics of what you need to know, there is a lot more to the puzzle.  If you think you may need to heal your gut, get tested for Celiac Disease, get tested for cross reactions, or need help navigating your gluten-free path then get some help from an experienced provider. For more information and a free consult, feel free to contact me with the email address or phone number here.  Consults are free but not all cases are accepted.  There are a limited number of spaces and because of that, our patients must qualify. Contact me to see if you qualify to learn from someone who has already walked the path, knows the pitfalls, and help guide you safely to health.  Are you ready to take your body back?

If you enjoyed this article, then feel free to sign up for my newsletter.  You will recieve a free weekly newsletter with education, articles, recipes, offers and more. Fill out the form today to start receiving them this week! You will also be the first to know about my upcoming books– so stay tuned by signing up today!

Sources used:

  1. https://www.verywell.com/gluten-sensitivity-genes-562967

 

 

 

3 Replies to “What Your Doctor May Not Know About Celiac and Gluten Sensitivity”

  1. Hi there! I know this is kinda off topic but I’d figured I’d ask. Would you be interested in exchanging links or maybe guest authoring a blog article or vice-versa? My site covers a lot of the same topics as yours and I feel we could greatly benefit from each other. If you might be interested feel free to shoot me an email. I look forward to hearing from you! Awesome blog by the way!

Leave a Reply

Your email address will not be published. Required fields are marked *