With the entire month of May being National Celiac Disease Awareness Month, I thought it would helpful for those not familiar with celiac disease to not only learn a little about it, but for those with celiac disease to learn more. Below you will discover information about refactory celiac disease and non-responsive celiac disease. If you have any form of gluten intolerance, this is a must read, as I go over a study that talks about how those with non-responsive celiac disease finally found an answer. This information will be beneficial to anyone with gluten intolerance. Please do not meet the note in the lower section.
In those with celiac disease, gluten (wheat, barley, rye, and most oats) triggers an autoimmune reaction and destroys the small intestine. This may prevent the absorption of nutrients. The symptoms can range from serious digestive issues to malnutrition. Additional conditions such as diabetes, dermatitis herpetiformis, and others are not uncommon. Though rare, non-responsive celiac disease (NRCD) or refactory celiac disease (RCD) may develop.
Non-Responsive Celiac Disease and Refactory Celiac Disease
Non-responsive celiac disease (NRCD) is when someone with diagnosed celiac disease does do not heal on the gluten free diet. Some patients have a more serious form of RCD known as refactory celiac disease (RCD). “Refactory” means stubborn or unmanageable. RCD is treated with immunosuppressive drugs which literally suppress the immune system. The most common side effect of these drugs is immunodeficiency. This results in the immune system not being able to do it’s job to fight infections and disease. Patients with RCD either have never responded to the gluten-free diet, or did initially, but then relapsed. This must last for a minimum of 1 year. However, if you do not experience relief with the gluten free diet within 6 months, it is definitely time to speak your doctor. They will order another biopsy. If the lining of the gut does not show improvement, RCD will be the first thing they will suspect. However, prior to diagnosing they ensure the person is not consuming gluten, whether intentionally or not. Much more news about this later in this article.
Types of Refactory Celiac Disease
There are two types of RCD, Type I and Type 2. Depending on what is found in the small intenstine upon biopsy determines which one you have. RCD2 is the most serious and may result in a higher risk of complications, cancer of the gut, and mortality rates.
No estimates are made on how many people may have RCD1, but it is estimated that 2 – 5% of those with celiac disease have RCD2. In the United Kingdom, the typical age of those diagnosed are over 5o years old, though some are as young as 30. A United States study shows ages range from 6 – 73.
Despite the gluten free diet not helping your symptoms, it is extremely important that you maintain a strict gluten free diet to prevent further damage.
Non-Responsive and Refractory Celiac Disease Study
While researching this subject, I ran across a new article by Dr. Vikki Petersen on this very subject. She explains that Dr. Alessio Fasano, a well known researcher in the field of celiac disease and gluten sensitivity, and four other doctors published an article recently in the BioMed Central (BMC) Gastroenterology on a celiac disease study. Since I still didn’t understand the condition well enough I went to the source of her article for additional information.
They placed RCD patients on a gluten contamination elimination diet (GCED). The diet consists of a gluten-free and dairy-free diet of fresh meat (not cured or processed), poultry, fish, fresh fruit, fresh vegetables; herbs, vinegar, oil, honey, white and brown rice. The patients stayed on the diet for three to six months. The only beverages allowed were water, Ensure (Boost is also gluten-free), Gatorade, and pure fruit juice. Plain dairy products were introduced after three weeks.
Important Note: The reason why only rice grains were allowed was because after they tested several other gluten free grains, flours and seeds, 32% of the time they were over 20 parts per million (ppm) gluten. Twenty ppm is the acceptable amount usually tolerated by most celiac patients. However, there are a small number who react to smaller amounts.
The average age of the 17 patients who completed the diet was 42, though the ages ranged from 6 – 73. Six of the patients had been diagnosed with RCD1. Fourteen (82%) responded well to the diet. Of the 14, 11 (79%) successfully returned to a normal gluten free diet without any recurrence of RCD. Two others are currently on the GFCD, one of which has decided to stay on the diet permanently, and one other was not available for follow-up. Five of the six RCD patients no longer met the criteria for RCD.
While the condition of RCD is rare, if you have gluten intolerance, it is extremely important to test the gluten free products you purchase ever so often, especially if you are experiencing symptoms. Or perhaps you can test new products that you introduce into your diet. While there may be other reasons for your symptoms, if you test the products you’ll have peace of mind. Home test kits are available such as EZ Gluten [website no longer exists]. Better yet, try a grain-free diet.
Meanwhile the FDA’s final ruling on gluten free labeling is sitting in the White House’ Office of Information and Regulatory Affairs (OIRA) for final enactment. I cannot wait to read what it says! Hopefully there will be repercussions for those manufacturers who do not meet the requirements of 20 ppm.
- Refactory Coeliac Disease (RCD) http://www.coeliac.org.uk/healthcare-professionals/management-of-coeliac-disease/refractory-coeliac-disease (UK article based upon references dated (2000 – 2011)
- The Study: Trace gluten contamination may play a role in mucosal and clinical recovery in a subgroup of diet-adherent non-responsive celiac disease patients (2013) http://www.biomedcentral.com/1471-230X/13/40
8 Replies to “Non-Responsive Celiac Disease and Gluten Intolerance”
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.
Excellent article. You suggested that people use at-home test kits to make sure their products are truly gluten free. I would urge you to promote Tricia Thompson’s Gluten Free Watchdog on your blog. (Just google the phrase, “Gluten Free Watchdog” and you’ll find it right away.) Her service is one-of-a-kind, and is critically important in ensuring honest labeling of gluten free retail foods. I am in no way affiliated with Tricia Thompson. I just recognize the importance of what she is doing. Please check it out.
Kevin Baker, President
Gluten Free Lexington
Great article! Thank-you so much! I have been struggling for 10 years! I was diagnosed in 2003 with Celiac Disease – by blood test (my sister was also diagnosed then too). I have been gluten-free since. My runs slowed down, but have never stopped. They have gone from “silly sand” to watery with undigested foods. Finally went to a GI in 2010 – biopsy showed my villi still flat – he asked if I knew how to eat GF – I wanted to slap him… arghh. I had more tests and they found Microscopic Colitis, and random inflammation in my gut. Intense food allergy tests indicate that I have Leaky Gut too. Back in 1988 (at age 27) – I was diagnosed with Lupus, we now have talked with a Rheumatologist and found that I don’t have Lupus, it’s all GI issues. So here I am, age 52, I have no clue what diet to be on, what to eat or not eat, I have watery, loose stools, some undigested foods… frustrated YES. The only relief was when I was on 500mg of Cipro for 14 days, the food began being digested within 12 hrs of starting the meds. Felt great for those 14 days! I now am having weird food reactions – I could always eat raspberries, had some last week, within 15 min I had an itchy rash near my mouth, next day, same thing…. I am on prednisone for 5 days due to a contact dermatitis rash… Something is going wrong and going fast! I am on a great probiotic – just started 10 days ago. I have tried SCD – for 3 months – lost weight, super tired, still undigested food – couldn’t move past the chicken, carrots, and applesauce. Sorry to go on and on.
But, would my GI have known to look for the the NRCD or RCD? Would my villi look different, was it a different test? I don’t currently have health insurance. One GI at The Lahey Clinic said it could possibly be RCD. How can I find out?
I am reading the articles you posted and I am grateful for this information – maybe this is it and I can just relax… Thanks again!
You are very welcome!
Besides what I wrote in this article, there really isn’t anything else I know on the subject. It’s unfortunate that you do not have health insurance. However, I would consult your doctor for the answer to your question about how you can find out if you have RCD or not. The first link at the bottom of this article explains the two things that they look for in a biopsy for an RCD diagnosis. It’s very technical, therefore, I left it out of this article. You probably need to be a general practitioner or pathologist to understand it.
Sorry I couldn’t have been more help.
I am new to this forum! I joined because my daughter was diagnosed with Celiacs disease last year. The recipies that you have shared have been a life saver! I have a question that I wanted to ask. My son who is 6 constantly has migraines and complains of not feeling well. Could this be a clue that he has Celiac too? what he experiences is very different from what his sister experienced with her reaction. Also my daughter who was diagnosed through blood testing is still having stomach pain. She went for 9 years undiagnosed. Should I have a biopsy done to see if she has leaky bowel? Or should I ask to have her sent to an allergist again to see if she has developed new food allergies that could be making her sick? Thank you so much for this forum!
Thanks for the article. I really wish I had health insurance, so I could be tested for this. Though I recently found out I am intolerant of dairy, I still have random random relapses, and I have been gluten free for two and a half years. If I eat rough foods like red meat, or tomato products once in a blue moon my stomach hates me for up to two weeks. It really sucks because I am only 23. before my symptoms for celiac disease started to show, I was literally able to tolerate any food and I never got sick. I’d really like to eat normally again while being gluten free.
From my understanding non-responsive celiac disease does not cause flare ups, but you would continually feel ill. I think it would beneficial for you to read Dr. Vikki Petersen’s articles on cross-reactivity: http://glutenfreerecipebox.com/gluten-cross-reactivity/ and http://glutenfreerecipebox.com/quinoa-gluten-cross-reactivity-celiacs/.
In addition, you probably would benefit from an allergy-elimination diet. Google it and you’ll find a few different versions. Red meat is one of the foods that is removed from the initial diet.
I hope some of these things help you.
I’d recommend gettin’ health insurance asap. I was diagnosed with Celiac disease 5 yrs ago. Had relapse after relapse. Was accused of either knowingly eatin’ gluten or accidently gettin’ cross-contaminated without my knowledge – neither of which happened. I prepare all my own foods, even for holidays and get togethers.
After 4 yrs of “hiccups”, I became seriously ill – sensory neuropathy, extreme weight loss, lethargic, speech changes, lost the use of my left leg. I went to doctor after doctor, all of whom insisted I was fine and must’ve cheated on my diet…
I was finally referred to Scott & White in Temple, Tx (it’s similar to the Mayo Clinic) where I was tested by 5 different neurological specialists. It was confirmed I had sensory neuropathy, none with a clue to the other hiccups. I convinced ’em to have a gastroenteroligist check me out.
I’ve severe malnutrition due to severe Crohn’s disease! I am on an even stricter diet and Remicade IV infusions, loads of vitamin and mineral supplements as well. My entire large colon, spare the ileum, is massively inflamed and with ulcers. Why? Not properly diagnosed nor treated for so long.
My hope is you don’t have anything else wrong with you, but I’d sure feel better if it were checked out. Best of luck.