Ask an Expert: Is Celiac Refractory Disease affected by all grains?

Tina's Paleo Raw Apple Pie!

Tina’s Paleo Raw Apple Pie!


Celiac Disease Awareness Month is coming up in May, and we want to learn (and share) as much as possible about the disease! This month we asked our friend Tina Turbin, founder of and to shed light on Refractory Celiac Disease (RCD) and the Gluten-Free Grain-Free Diet (also known as the Paleo Diet). There is little known about RCD, and it is not only a topic that is interesting, but one many celiacs want to learn more about. Tina is well versed on the subject- she lives with it, researches it, and helps so many people with RCD all around the world.

Tina Turbin on Celiac Refractory Disease and the Paleo Diet

As most of us know, more and more people are being diagnosed with Celiac Disease, but now there is much talk about celiacs not responding to the gluten-free diet. How can this be? Well, let’s take a look at this area and educate ourselves so we can understand this field, and hopefully we can do something about it.

First of all, yes, there is a term for the common diagnosis of celiacs not responding to the gluten-free diet. It is called Refractory Celiac Disease. This is when someone who is celiac fails to respond to the “treatment”, which we know as following a gluten-free diet.

Celiac disease is an autoimmune disorder characterized by intolerance to gluten by the small intestine. This condition is very common and frankly the words celiac and gluten-free are now household words. We are told to go off all gluten containing grains and avoid any cross contamination and we should be feeling better in due time. This of course involves being diligent to our avoiding any possibilities of cross contamination. We indulge in delicious cupcakes made with Sweet Rice Flour, we added in more nutritious grains such as Sorghum and Teff to our diet and some of us ingest Oats, successfully.

We also clean out the cupboards, toss the old wooden spoons and cutting boards for fear of any gluten residing in the cracks, get a new toaster, and we even use a magnifying glass to read the labels to ensure we are not ingesting any gluten in any of your ingredients. Good job! Yet we still have upsetting symptoms. How can this be? We were told if we followed this gluten-free diet in due time we would be feeling much better so we were truly expecting our symptoms to disappear.

Our doctor tells us that he feels we are still getting gluten; some of us have been now diagnosed with “it’s in our head”. The saga can go on for years and can really put a damper on life.

Welcome to the world of possible Refractory Celiac Disease. There are more than 40% of celiacs who did not respond to the standard gluten-free diet. In other words, we are not alone and in fact statistically we’re now classified in a large group of people who are not responding well enough to a gluten-free diet!

There is no one shot answer or solution as to why there is Refractory Celiac Disease, yet there are incredible revealing facts. We all have individual genes which express themselves, we all have our own history of eating and abuse, and care to our bodies and we all have various stages of celiac disease when we were diagnosed. Aside from those points, many of us may have encountered additional auto-immune disease diagnoses which are quite common with the diagnosis of celiac disease. Basically we are all quite individual, but there is no denying the fact that there is an incredibly large percentage of celiacs who do not respond to the “treatment” for celiac disease, the gluten-free diet.

One thing we do have in common is that our bodies were not designed to digest grains, period! Yes, I am sorry to be the one to let you know this but I cannot say it any milder than that. If we take a good look at the many years of scientific studies on this topic it is quite clear that we just do not have the digestive system to digest the grains we are eating. Grains in general may very well be causing a host of many other symptoms as well, such as obesity, skin disorders, diabetes, inflammation, etc.

Grains put out poisons called lectins? Lectins are proteins found in plants and animals (and our bodies too) and are just about everywhere, especially in grains, legumes (especially soy and peanuts), nuts and seeds. Lectins have a protective purpose for the GRAIN. Lectins protect the grain in its attempt to survive. Lectins are in the seeds of plants. They protect the seed as a poison, hence they help the life of the plant to be able to propagate and live on. These lectins cause considerable intestinal distress to those eating the seeds, with the sole purpose to deter any “would be” predator from coming back for more or even thinking about it. They also have a load of other anti-nutrients in their makeup. What wild cat, wolf, etc., eats and hunts looking for grains? None! We only feed them to our poor domesticated animals and even cows to fatten them up. Animals much prefer their natural diet.

Grains are not naturally in man’s diet and never were. Nor were legumes, which is another subject entirely but along a very similar line. Yet, man eats more grains and sugar than any given foods by weight in our diet and neither was ever available or part of man’s original diet. In 2007 the USA consumed an average of 1540 pounds (700kg) of corn per year. I can only imagine where we stand now with corn let alone the amount of grains overall. We have really been over-ingesting grains, and that is an understatement.

I encourage anyone reading this to take a good look at what comprised man’s original and natural diet and how our health has declined since the introduction of grains overall in the Agricultural Era, just around 10,000 years ago. Man’s original diet has been called all sorts of names such as the Paleo diet, The Caveman diet, etc. Whatever the name, it has revelations which do open the door to possible solutions and answers right at our finger tips.

So how does the Paleo diet (a grain-free diet) affect Refractory Celiac Disease? If you or a loved one eliminate these grain irritants from your diet you could possibly gauge how you feel or how progressed your auto-immune disease really is. By following the Paleo grain-free diet you can gauge what is causing what but you need a good base to start. Do not do any of this without consulting with your doctor, especially if you are very ill. Simply eliminate all grains and any cross contamination of grains from your diet. Not unlike the gluten-free diet you are already familiar with.

Instead of the high carbohydrate, high glycemic, sugar-laden, gluten-free muffins, I now make my own delicious grain-free rolls, breads, muffins. These are all grain-free and sugar-free, which are also delicious and nutritious. I have eliminated the symptoms I just could not get on top of and that doctors had no solutions that worked or helped. I was at my wits end. I am so pleased to have found the facts and scientific studies on the Paleolithic Era and Man’s natural diet.

I do hope this article was helpful and if I can answer any further questions please do not hesitate to ask. You may also visit my new website offering many scientific studies, facts and recipes at



Tina Turbin is the founder of, voted #2 in the world in 2009; turning it over in 2012 to her celiac daughter, Miranda Jade Turbin. As a celiac advocate, Tina researches and writes about the grain-free diet, and focuses on Paleo recipe development. Tina is an award winning Paleo gluten-free recipe developer and author of the well-known and multi-award winning children’s titles, Danny the Dragon.

This entry was posted in Ask An Expert, Celiac Disease Research, Celiac Refractory Disease and tagged , , , , , , . Bookmark the permalink.

2 Responses to Ask an Expert: Is Celiac Refractory Disease affected by all grains?

  1. Anne says:

    Have you seen this article about people who are not responding to a GF diet? They put 17 people on what they called a Gluten Contamination Elimination Diet and 15 responded well. The only grains allowed were white and brown rice. Some other processed foods were removed too. You can read the complete article for free if you go to PubMed and search for 23448408. The title is: “Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients.”

    I have been on the paleo diet for a few years. I found I do much better off all grains and sugars.

  2. Martin says:

    I do believe that eliminating gluten contamination is just one possibility of how the diet helped. The other is that the whole food diet improved the intestinal barrier to the extent that neither trace gluten nor any other food particles are able to cross to the blood stream and trigger autoimmune response.

Leave a Reply

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

Protected by WP Anti Spam