By Amy Burkhart MD, RD

Many people are told they have “mild celiac disease,” but this raises a lot of questions:

• What does that really mean?
• Do they need to follow a strict gluten-free diet?
• Can they “cheat” occasionally since it’s considered mild?
• Are the long-term effects the same as those of full-blown celiac disease?
• Does this mean they are more “gluten-intolerant” than celiac?
• What if they have “mild” non-celiac gluten sensitivity?

This topic often leads to a lot of uncertainty. Let’s clarify the confusion

First and most importantly, there is no such thing as mild celiac disease

“Mild celiac”  is a misnomer. Just as you can’t be “a little bit pregnant,” you can’t have mild celiac disease. You either have celiac disease or you don’t.

The confusion arises because:

1. Interpreting biopsy and lab results can be challenging.
2. Symptoms vary from patient to patient.
3. There is a lack of education about celiac disease within the medical community.

The biopsy is currently the gold standard for diagnosing celiac disease

A biopsy is a procedure in which a small piece of tissue is taken and looked at under a microscope.  In combination with labs and history, it is used to verify the lab diagnosis of celiac disease. If the screening labs are positive or there is a  high suspicion of celiac disease due to family history and clinical history, the biopsy is done.

The biopsy is graded on what is called the “Marsh Classification System.”

While the specifics of this system are beyond the scope of this article, it’s important to know that the grading system ranges from 0 to 4:

• Zero is normal.
• 1-4 are abnormal.

A person with celiac disease can have a grade from 1 to 4. Patients with a grade of 1 or 2 may be told their celiac is “mild.” This label is based on the grading system, but the level of damage does not determine whether celiac disease is present or how “severe” it is. You either have it, or you don’t.

If the biopsy is abnormal and the labs and history support it, the person has celiac disease—regardless of whether the grade is 1, 2, 3, or 4.

The treatment is the same for all grades: a lifelong, gluten-free diet. Not sometimes. Not just on weekdays. Always.

Many things affect the biopsy results.

Just as celiac symptoms differ from person to person, biopsy results can vary as well. Several factors can influence the results, such as:

• The person performing the procedure
• Where the samples are taken from
• How many samples are collected

Additionally, if a patient stopped eating gluten before the biopsy because they could no longer tolerate feeling sick, the results could be affected.

It often takes months to schedule a biopsy, and patients don’t want to wait to stop eating gluten because it’s making them feel ill. This can impact the results, possibly making the damage appear “mild.” For example, two months ago, the damage might have looked “severe,” but now it looks less so. However, this doesn’t change the diagnosis: if the biopsy is positive for celiac disease, it is positive. The treatment is the same—a lifelong, gluten-free diet.

Note:

• Continue eating a gluten-containing diet until the biopsy is done to ensure accurate results.
• If you have trouble getting an appointment, ask to be placed on the cancellation list. Call regularly to check for any openings. If you’re experiencing severe symptoms, let them know.

A study published in the Journal of Clinical Gastroenterology and Hepatology in March 2013 compared patients with lower-grade biopsies to those with more severe cases. Even patients with lower numbers on the biopsy showed nutritional deficiencies in iron, B12, and folate, though these were less severe than in those with more advanced disease. Additionally, while fewer patients with mild celiac had osteopenia or osteoporosis, these conditions were still present. Ongoing exposure to gluten can worsen intestinal damage.

Do you want to wait until the damage becomes severe, or take action now to prevent it from getting worse?

Thanks to increased awareness, celiac disease is being diagnosed earlier, and more people are being identified with grade 1 or 2 changes. This is great progress, but it’s important to remember that even these early stages still indicate celiac disease.

Evern Grade ! or 2 ( Low Grade) Biopsies Correlate With Vitamin Deficiencies & Bone Loss ( Osteopenia)

A study published in the Journal of Clinical Gastroenterology and Hepatology in March 2013 compared patients with lower-grade biopsies to those with more severe cases. Even patients with lower numbers on the biopsy showed nutritional deficiencies in iron, B12, and folate, though these were less severe than in those with more advanced disease. Additionally, while fewer patients with mild celiac had osteopenia or osteoporosis, these conditions were still present. Ongoing exposure to gluten can worsen intestinal damage.

Do you want to wait until the damage becomes severe, or take action now to prevent it from getting worse?

Thanks to increased awareness, celiac disease is being diagnosed earlier, and more people are being identified with grade 1 or 2 changes. This is great progress, but it’s important to remember that even these early stages still indicate celiac disease.

Every patient with celiac disease has different symptoms

No two people are alike. Does this mean someone has a “ mild” case of disease if their symptoms from exposure are less than someone else’s? No.

They all have celiac disease, and the treatment is the same. Regardless of symptoms, it is celiac disease, not gluten sensitivity. They are different conditions and the treatment is different.  We know some people 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.

No matter your symptoms or reaction to gluten, you still have celiac disease, and the treatment is the same

The severity of outward symptoms does not clearly match the internal damage caused by celiac disease. Many long-term risks of untreated celiac disease are well known. Even if you only experience mild symptoms like a headache or slight fatigue after eating gluten, your intestines are still being affected. The long-term risks are the same as for someone who is severely affected by cross-contamination.

You might have been tested for celiac disease because a sibling or parent was diagnosed, even if you had no symptoms. If your tests or biopsy were positive, you still have celiac disease. Whenever you eat gluten, your intestines are being harmed.

If your intestine is being affected, so is your future health.

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 grade doesn’t matter. The treatment is the same: a lifelong gluten-free diet.
3. The severity of external symptoms is not an indicator of how much gluten you can eat. If you have been diagnosed with celiac disease, NO amount of gluten is safe. Mild external symptoms do not mean you are “gluten-sensitive.” It is still celiac disease.
4. Please seek celiac specialists to get more comprehensive and accurate care when possible.