Celiac Disease

We understand that it is very important to you to learn about the wide range of symptoms and signs that celiac disease can cause.

Throughout this page, Gluten Free Journey will help you learn about the various details surrounding Celiac Disease including symptoms, diagnosis and treatment, and how to manage a gluten free life.

What is Celiac Disease?

Celiac disease (CD), sometimes called celiac sprue, coeliac or gluten-sensitive enteropathy, is an immune reaction to eating gluten, a protein found in wheat, barley and rye.

Celiac disease is a serious autoimmune disease that occurs in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine.

It is estimated to affect 1 in 100 people worldwide. Two and one-half million Americans are undiagnosed and are at risk for long-term health complications.

If you have celiac disease, eating gluten triggers an immune response potentially in your entire body.

Celiac disease is a serious, genetic autoimmune disorder and when a person with Celiac Disease eats gluten, the protein interferes with the absorption of nutrients from food, damaging a part of the small intestine called villi.

Avoiding gluten is an absolute must for Celiacs, even that little crumb, is NOT okay.

Commons Symptoms of Celiac Disease

Celiac Disease symptoms may appear together or singularly in children or adults. A wide range of symptoms may be present. In general, the symptoms of untreated CD indicate the presence of malabsorption due to the damaged small intestine.

Although some or all of these symptoms occur in CD, some can also occur in many other diseases more common than CD.

Anemia

Anemia is a condition in which you don’t have enough healthy red blood cells to carry adequate oxygen to the body’s tissues. Having anemia may make you feel tired and weak. There are many forms of anemia, each with its own cause.

Chronic Diarrhea

A wide range of problems can cause chronic diarrhea; some of the most common causes include irritable bowel syndrome (IBS), inflammatory bowel disease (Crohn disease and ulcerative colitis), malabsorption syndromes in which food cannot be digested and absorbed, and chronic infections.

Fatigue

Fatigue is a term used to describe an overall feeling of tiredness or lack of energy. It isn’t the same as simply feeling drowsy or sleepy. When you’re fatigued, you have no motivation and no energy. Being sleepy may be a symptom of fatigue, but it’s not the same thing.

Cramping & Bloating

A collection of symptoms such as cramping, abdominal pain, bloating, diarrhea, and constipation can be tied to Celiac Disease. This is commonly diagnosed as Irritable Bowel Syndrome (IBS) before Celiac Disease.

Irritability

Irritability is a feeling of agitation. When you’re irritable, you become frustrated or upset easily. You might experience it in response to stressful situations. It may also be a symptom of a mental or physical health condition.

Weight Management

After a celiac disease diagnosis, you have to start the gluten-free diet. Some people gain weight after starting this diet while others struggle with weight loss.

Malnutrition and Malabsorption

Malnutrition and malabsorption are conditions that results from eating a diet which does not supply a healthy amount of one or more nutrients. This includes diets that have too little nutrients or so many that the diet causes health problems. The nutrients involved can include calories, protein, carbohydrates, fat, vitamins or minerals.

Depression and Anxiety

Ongoing research is showing that there is a big link between celiac disease and psychological functions.

Anxiety, depression and mental health struggles are common issues reported in celiac disease patients, including those behind Gluten Free Journey.

Celiac Disease Diagnosis

There are two steps to finding out if you have celiac disease: screening and diagnosis.

You should always consult with a physician experienced with celiac disease to ensure proper diagnosis.

To confirm a Celiac Disease diagnosis, individuals will need to have an intestinal biopsy.

A pathologist will assign a Modified Marsh Type to the biopsy findings. A Type of 3 indicates symptomatic celiac disease. However, Types 1 and 2 may also indicate celiac disease.

Intestinal Biopsy

What Does the Intestinal Biopsy Show?

The endoscopy itself may show scalloping and/or flattening of dudodenal folds, fissuring over the folds, and a mosaic pattern of mucosa of folds.

  • Density of intra-epithelial lymphocytes (IELs), which are white blood cells found in the immune system.
    • More than 25 IELs per 100 epithelial cells is significant.
    • Epithelial cells line your intestines and act as a barrier between the inside and the outside of your body.
  • Crypt hyperplasia with a decreased villi/crypt ration.
    • Crypts are grooves between the villi, which are the small fingerlike projections that line the small intestine and promote nutrient absorption.
    • Crypt hyperplasia is when the grooves are elongated compared to a normal intestinal lining which has short crypts.
  • Blunted or atrophic villi.
    • This is a shrinking and flattening of the villi due to repeated gluten exposure.
  • Mononuclear cell infiltration in the lamina propria.
    • The lamina propria is a thin layer of loose connective tissue, which together with the epithelium forms the mucosa which stops pathogens from entering the body.
  • Epithelial changes
    • Including structural abnormalities in epithelial cells.

Why an Intestinal Biopsy?

An intestinal (duodenal) biopsy is considered the “gold standard” for diagnosis because it will tell you

  • if you have celiac disease,
  • if your symptoms improve on a gluten-free diet due to a placebo effect (you feel better because you think you should)
  • or if you have a different gastrointestinal disorder or sensitivity which responds to change in your diet.

If the results of the antibody or genetic screening tests are positive, your doctor may suggest an endoscopic biopsy of your small intestine. An endoscopy is a procedure that allows your physician to see what is going on inside your GI tract.

A scope is inserted through the mouth and down the esophagus, stomach and small intestine, giving the physician a clear view and the option of taking a sample of the tissue.

This is usually an outpatient procedure. Samples of the lining of the small intestine will be studied under a microscope to look for damage and inflammation due to celiac disease.

It is recommended that the doctor take at least 4-6 duodenal samples from the second part of duodenum and the duodenal bulb, in order to obtain an accurate diagnosis.

Endoscopy Biopsy

What to Expect During an Endoscopy

This procedure takes a little less than thirty minutes and, for adults, sedatives and local anesthetics are used. Children are usually put under general anesthesia.

During the biopsy, the gastroenterologist will insert a small tube with a camera through the patient’s mouth and into the digestive tract to the small intestine.**

Once there, the physician will examine the duodenum (entryway into the small intestine) and take multiple tissue samples due to the “patchy” nature of villous atrophy. The tissue samples will then be examined by a pathologist under a microscope and assigned a Marsh classification.

Since there are no nerve endings in the lining of the intestine, the procedure is not painful – though some patients may experience a sore throat.

Patients who cannot or will not tolerate an endoscopy may be given the option to undergo video capsule or “pill” endoscopy where a capsule the size of a large vitamin pill is swallowed and takes thousands of pictures of the small intestine. However, there is no conclusive evidence that this can substitute for traditional endoscopy and biopsy.

For Individuals with Dermatitis Herpetiformis (DH)

A skin biopsy is sufficient for diagnosis of both DH and celiac disease.

This biopsy involves collecting a small piece of skin near the rash and testing it for the IgA antibody.

It is not necessary to perform an endoscopic biopsy to establish the diagnosis of celiac disease in a patient with DH; the skin biopsy is definitive.

For Children

For children with symptoms and signs of malabsorption, a very high tTG-IgA titer (>10 time upper limit of normal), and a positive EMA (antiendomysial) in a second blood sample, some physicians may recommend avoiding endoscopic biopsy, and directly starting a gluten-free diet.

Others may recommend genetic testing for additional confirmation. Resolution of symptoms while on a gluten-free diet may be used to confirm the diagnosis.

Modified Marsh Classification of Histologic Findings in Celiac Disease

The World Gastroenterology Organization recommends pathologists use a modified Marsh classification for interpretation.

Dr. Michael Marsh introduced the classification system in 1992 to describe the stages of damage in the small intestine as seen under a microscope, also known as histological changes.

Originally the Marsh Types ranged from 0 to 4, with a type of 3 indicating celiac disease. It has since been simplified to allow for a greater degree of consistency and reproducibility between pathologists.

Modified Marsh
*IEL/100 enterocytes – intra-epithelial lymphocytes (IELS) per 100 enterocytes (epithelial cells in the small intestine)*

Type 0: Intestinal lining is normal -celiac disease highly unlikely

Type 1: Intestinal lining has been infiltrated with IELS – seen in patients on a gluten free diet (suggesting minimal amounts of gluten or gliadin are being ingested), patients with dermatitis herpetiformis and family members of celiac disease patients. This may also indicate gastroduodenits caused by H. pylori, hypersensitvity to food, infectons (viral, parasitc, bacterial), bacterial overgrowth, pharmacological drugs (mainly NSAIDs), IgA defcit, common variable immunodefciency or Crohn’s disease.

Type 2: Very rare, seen occasionally in dermatitis herpetiformis.

Type 3: Spectrum of changes seen in symptomatic celiac disease

Simplified systems may be more reproducible (Corazza, Roberts, Ensari)

Grade A/Type 1: increased intraepithelial lymphocytes but no villous atrophy
Seen in patients on gluten free diet (suggesting minimal amounts of gluten or gliadin are being ingested); patients with dermatitis herpetiformis; family members of celiac disease patients, not specific, may be seen in infections

Grade B1/Type 2: villi still present but shortened
Spectrum of changes seen in symptomatic celiac disease

Grade B2/Type 3: complete villous atrophy
Spectrum of changes seen in symptomatic celiac disease

Celiac Disease Treatment

Celiacs must be alert to hidden sources of gluten such as HVP/HPP (hydrolyzed vegetable/plant protein); malt; spelt; kamut; and certain drug products.

Today’s processed and packaged foods have many hidden sources of gluten which can be unintentionally ingested.

Care should be taken in the selection of soups, luncheon meats and sausages.

When you suffer from Celiac Disease it is extremely important to read the list of ingredients on every product, every time.

Lifelong Adherence to the Gluten-Free Diet

Celiac disease is a chronic autoimmune disease, which means that you cannot “grow out” of it. No matter how long you follow the rules, there is no going back to eating gluten, ever. Sorry.

The ONLY treatment for both celiac disease and non-celiac gluten/wheat sensitivity is lifelong adherence to a strict gluten-free diet. 

Only food and beverage with a gluten content less than 20 parts per million (ppm) is allowed.

The gluten-free diet heals the villous atrophy in the small intestine, causing symptoms to resolve. 

Following a gluten-free diet also helps prevent future complications, including malignancies and the many other ailments we read about above.

Vitamins and Dietary Supplements

Commonly, people with celiac disease are deficient in fiber, iron, calcium, magnesium, zinc, folate, niacin, riboflavin, vitamin B12, and vitamin D, as well as in calories and protein. Deficiencies in copper and vitamin B6 are also possible, but less common. 

After treatment with the gluten-free diet, most patients’ small intestines recover and are able to properly absorb nutrients again.

However, patients may continue to be vitamin B deficient as the gluten-free diet may not provide sufficient supplementation.

This can be remedied with a daily, gluten-free multivitamin. The multivitamin should not exceed 100% of the daily value (DV) for vitamins and minerals.

Calcium and vitamin D supplementation may also be prescribed by your physician if your intake is not sufficient.

Physician Followups Timeline

At Time of Diagnosis

At time of diagnosis, your physician should:

  • Perform a complete physical exam including determination of BMI and examinations for enlarged lymph nodes and occult blood in the stool
  • For adults, and children with a long-delay in diagnosis, severe malabsorption or bone health isues, order bone densitometry
  • Order celiac serology (anti-DGP IgA and anti-tTg IgA) and DQ2/DQ8 genetic testing, if not previously obtained
  • Order routine tests (complete blood cell count, iron studies, vitamin B studies, thyroid functions tests with thyrotropin , liver enzymes, calcium, phosphate, 25-hydroxy vitamin D, copper, and zinc levels)
  • Recommend family screening (DQ2/DQ8 genetic testing and celiac serology to include anti-tTg IgA, anti-DGP IgG, and total IgA to exlude IgA deficiency)
  • Recommend a dietitian expert in celiac disease and the gluten-free diet to provide education and counseling
  • Recommend a mental health professional to address the psychosocial aspects of going gluten-free and coping with a chronic disease, as needed
  • Recommend a gluten-free multivitamin and additional supplementation as needed
  • Assess hepatitis B, flu and pneumococcal immunization status

3-6 Month Visit

You should see your physician 3-6 months after your initial diagnosis and annually thereafter to identify nutritional deficiencies, address symptoms you may still be experiencing, and confirm your adherence to the gluten-free diet.

Patients on a strict gluten-free diet should have a negative anti-tTg IgA test at the 6-12 month mark.

At the 3-6 month visit, your physician should:

  • Assess symptoms
  • Perform a complete physical exam, on indicationOrder celiac serology (anti-DGP IgA and anti-tTg IgA)
  • Repeat routine tests, if previously abnormal

12 Month Visit

At your 12 month visit, your anti-tTg IgA level should be as close to zero as possible.

At this visit, your physician should:

  • Assess symptoms
  • Perform an abdominal physical examination, on indication
  • Order celiac serology (anti-DGP IgA and anti-tTg IgA)
  • Repeat routine tests
  • Assess hepatitis B immunization status, if previously abnormal

Annual Thereafter

At your annual visit, your physician should:

  • Assess symptoms
  • Perform a complete physical exam
  • Order celiac serology (anti-DGP IgA and anti-tTg IgA)
  • Repeat routine tests
  • Order other tests as clinically indicated
  • Recommend a flu shot
  • Recommend a dietitian to provide education and counseling as clinically indicated
  • Recommend a mental health professional to address the psychosocial aspects of going gluten-free and coping with a chronic disease, as needed
  • Repeat bone densitometry at 2-3 years, if previously abnormal, and for adolescents non-compliant with a gluten-free diet
  • For adults, consider repeat small intestinal biopsy at 3-5 years to assess dietary compliance and rule-out refractory celiac disease

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*Reminder - We are not health professionals. We are just individuals like you wanting to learn about Celiac Disease and sharing our research.