My doctor told me I have “Mild Celiac Disease”
What does that mean?
I have seen several patients this month who were told by their practioners that they only had a “Mild” case of celiac disease. “ What does that mean?” they ask me. Do they need a strict gluten free diet? Can they “cheat” once in a while since it is only mild? Are the long term effects the same? Does that mean they are simply ” gluten sensitive?” What if they have “mild” non-celiac gluten sensitivity? What then? There seems to be some confusion around this topic so I thought this month it would be an important issue to address…
What is “Mild Celiac Disease?”
First-and most importantly-there is no such thing as Mild Celiac Disease. This is a misnomer. Just as you can’t be “a little bit pregnant”-you can’t have mild celiac disease. You either have it, or you don’t.
So why the confusion? Why write on this topic? Because I see from my patients and the community that this is not clearly understood by many people.
The confusion arises from the two following areas:
1. The interpretation of the biopsy.
2. The variability in symptoms from patient to patient.
The biopsy: A biopsy is a procedure in which a small piece of tissue is taken and looked at under a microscope. An intestinal biopsy is currently the gold standard for diagnosing celiac disease. It is used in combination with other factors to diagnose celiac disease. The biopsy is graded on what is called the “Marsh Classification System”. While the details of this system are beyond the scope of this article, what is important to know about this grading system is that it is based on a scale of 0-4 and looks at the intestinal architecture. Zero is normal and 1- 4 are abnormal. A person with celiac disease can have any number ranging from 1-4. This is where the confusion comes in. Patients with a grade 1 or 2 may be told their celiac is “mild”. The practioner is basing the “Mild” comment on the results of the grading system. This is often confusing to patients. Irrespective of whether the person has a 1,2,3 or 4 and the clinical picture fits-they have celiac disease. The treatment is the same irrespective of the Marsh grade-a lifelong gluten free diet. Not sometimes, not just on weekdays-always.
Just as the symptoms of celiac differ from person to person, so do the biopsy results. There are many variables that will affect the biopsy. The person doing the procedure, where they took samples and how many samples were taken-all will affect the results. And, perhaps the patient stopped eating gluten before the biopsy because they just couldn’t take feeling sick any more. They tried to get an appointment while eating gluten but there weren’t any available for a biopsy for two months. This may affect the results and make the damage look “mild”. Two months prior it might have looked “severe”. The important point is-it doesn’t matter. If the biopsy is positive for celiac disease, it is positive. The treatment is the same. A lifelong gluten free diet.
Note: Please do continue eating a gluten containing diet until the biopsy is done so that the results are accurate. If you are having trouble getting an appointment ask to go on the cancellation list and call often to check for any openings. If you are experiencing severe symptoms-openly explain that to them.
A study in the Journal of Clinical Gastroenterology and Hepatology in March 2013 compared patients with mild celiac to those with more severe ( Marsh 3) celiac disease. The patients with “Mild” celiac still had deficiencies in nutritional parameters such as iron, B12 and folate. Albeit they were not as severe as the deficiencies seen in the more severe cases-they were there. And, while there were less patients with osteopenia and osteoporosis in the mild group-they were still there. We know that continuous exposure to gluten can worsen the damage in the intestine. Do you want to wait until it is severe or play an active role and prevent it from worsening?
Celiac is getting diagnosed earlier these days with increasing awareness among physicans and patients. This means more people are getting diagnosed with grade 1 or 2 changes. This is progress! This is great news! This is still celiac disease!
The variability of symptoms from patient to patient:
Every patient with celiac disease has different symptoms. No two are alike. But, does this mean someone has a “ mild” case of disease if their symptoms from accidental exposure are less than someone elses? No.
They all have celiac disease and the treatment is the same. Independent of symptoms it is celiac disease, not gluten sensitivity. They are different entities.
We know there are people who have a clinically silent form of celiac disease. Externally they have no symptoms but their biopsy shows damage. Do they need a strict gluten free diet just like the person with overt symptoms? Absolutely.
They still have celiac disease.
The severity of outward symptoms does not clearly correlate with the damage occurring internally and the long term risks of celiac disease are well known.
If you only get a mild headache when you eat gluten you must realize that not only your head is affected-your intestine is as well. If you simply feel a little tired when eating gluten, your intestine is still being affected and the long term risks are the same as someone who is bedridden by cross contamination. Perhaps they tested you because your sibling or parent was diagnosed with it but you had no symptoms. Your tests/biopsy were positive -you still have celiac disease and when you eat gluten your intestine is being affected.
If your intestine is being affected so is your future health.
No matter what your external symptoms or reaction to gluten is -you still have celiac disease and the treatment is the same.
So, if someone tells you your celiac disease is mild please remember ( and feel free to educate them!):
1. There is no such thing as “Mild” celiac disease.
2. If the biopsy is read as positive for celiac disease-it is positive. The treatment is the same, independent of the grading system, a lifelong gluten free diet.
3. Severity of external symptoms are not an indicator of how much gluten you can eat. If you have diagnosed celiac disease-no amount of gluten is safe. Mild external symptoms do not mean you are “gluten sensitive”. It is still celiac disease.
I hope everyone spreads the word about Celiac Disease this month in honor of Celiac Awareness Month!
THIS ARTICLE IS COPYRIGHTED BY AMY BURKHART, MD, RD.
Past columns by Dr. Burkhart:
November 2015: Cold Sores, Canker Sores and Gluten
July/August 2015: A New Home Test To Monitor Gluten Exposure
February/March/April 2015: Arsenic in the Gluten-Free Diet: Facts and Tips
December 2014/ January 2015: The Microbiome and Celiac Disease: A Bacterial Connection
October 2014: Should You Trust Gluten-Free Labels?
September 2014: Triggers for celiac disease: One possible answer
July/August 2014: Ten Tips for a Healthier Gluten-Free Diet
June 2014: Back Pain and Gluten
April 2014: Update on Restaurants and Gluten-Free Dining
January 2014: Four Vitamin Toxicities on a Gluten-Free Diet
December 2013: Move Over Gluten-Free, Low FODMAP is Next
November 2013: SIBO, Gluten and IBS: What Is The Connection?
September 2013: Is gluten really the culprit in gluten sensitivity?
August 2013: Clarifying the Gluten-Free Labeling Rule
June/July 2013: No such thing as Mild Celiac Disease
May 2013: Magnesium Deficiency
March 2013: Why am I having migraines?
February 2013: What is fructose malabsorption?
January 2013: Educating doctors about celiac disease
December 2012: Are supplements to digest gluten safe and useful?
Photo by www.michaelandersongallery.com
“I have been a patient of Dr. Amy Burkhart for several years. I suffer from Crohn’s disease and was having difficulty in my daily life. After visiting many doctors, all of whom were unable to help me, Dr. Burkhart took the time and patience to create a plan which brought me back to health. I still follow her plan to this day and have been living a normal healthy life. Dr. Burkhart listened to my symptoms along with listening to me, she took her time in preparing a plan which led me to the road for recovery. I cannot thank Dr. Burkhart enough, and I would recommend her to anyone.”