FAQs About Diagnosis

How long will it take for my tTG count to be normal?

If there is no gluten intake, tTG starts to decline within months but may take 2 years to normalize.

A strict gluten free diet must be maintained thereafter so that tTG continues to remain within the normal range.

If my tTG count returns to the normal range after following a gluten free diet, will it mean that I am cured?

No, a normal tTG would only imply that the disease is under control and the level of antibodies has normalized. But a small amount of gluten intake will again elevate the level of antibodies and the tTG count.

Is it necessary to be consuming gluten before the biopsy?

A regular gluten containing diet for 8-12 weeks (for e.g. 2 wheat rotis/2 breads per day) prior to biopsy is needed to obtain accurate results.

If someone with celiac disease is doing well on a gluten free diet, does she need to repeat the biopsy?

No, if the diagnosis was based on a biopsy and the individual is doing well on a gluten free diet, there is no need to repeat the biopsy.

However, one should visit the doctor for follow-up on a yearly basis. Read more

What is the harm if biopsy is not performed before confirming the diagnosis?

In cases where gluten is eliminated from the diet without performing the biopsy, the following scenarios can occur:

  1. It will be extremely difficult to confirm the diagnosis of celiac disease later (unless gluten is re-introduced for a period of 8-12 weeks and the biopsy done at that stage). This means that one can then never be sure if one actually has celiac disease.
  2. One will also not be sure whether to follow the diet strictly or not. If followed strictly, one will be committing money, time and energy to maintain a diet which one may not need in the first place. If the diet is not followed strictly, the chances of complications will increase if one actually has celiac disease.
  3. Also one will not know the risk one’s family members may have to develop celiac disease.
  4. And finally experience in many countries including India shows that if a diagnosis is made without confirmation of the disease with a biopsy, chances of defaulting on the diet are much higher!

Can the diagnosis of celiac disease be made only on the basis of blood tests?

There have been recent guidelines by some international associations involving the diagnosis of CD based on a combination of blood tests, under certain defined circumstances. This is being debated internationally. In India, no scientific body suggests that we skip the biopsy and diagnose based on blood tests alone (Read the question – What is the harm if biopsy is not performed before confirming the diagnosis).
As there is a lifelong modification of diet involved, it is extremely critical to be certain of the diagnosis before initiating the diet change. There may be instances where tTG is positive but the individual does not have celiac disease or tTG is falsely elevated; i.e., it is present but there is no celiac disease and hence there is no need to go on a gluten free diet. Additionally, in a study conducted by University of Chicago Celiac Disease Center, 10% patients were diagnosed with a different disease at the time of endoscopy and biopsy.

It is important to keep in mind that getting the blood test done at a reliable center is an important aspect but with a high incidence of gastrointestinal infections including giardia in our country, false positive results are common. Also we need to consider the possibility of potential celiac disease.

At present, we recommend biopsy in all cases where celiac disease is suspected.

Is the celiac serology sufficient to rule out the diagnosis of celiac disease?

No. Though the serology is good with a high sensitivity but if the suspicion is strong (signs and symptoms or positive family history), then the biopsy must be done regardless of the negative serology because both false positive and false negative tests are known to occur. Biopsy remains the gold standard. On the other hand, a negative ‘genetic’ study (absence of HLA DQ2 and HLA DQ 8) virtually rules out the possibility of celiac disease.

Can biopsy be performed for an individual who was diagnosed with celiac disease based only on tTG and who had started a gluten free diet thereafter?

The result of biopsy will be inaccurate if there has not been any gluten consumption for a considerable amount of time in the diet, prior to the biopsy (This period is not defined and hence it is recommended that the biopsy be done while the suspected patient is on gluten).
The individual along with her Gastroenterologist will need to decide what would be the best course of action. In some situations, gluten challenge (i.e. ingestion of gluten for 8-12 weeks period under close supervision of your doctor) and then performing the biopsy would be ideal.

If the blood test is positive and biopsy is not, what could it indicate? What should be the course of action in such a situation?

The various possibilities in such a situation are:

  • Blood test was falsely positive and should be repeated preferably in an accredited laboratory.
  • Biopsy was either not performed appropriately or not read correctly
  • The individual is a potential celiac patient and needs to be monitored carefully. This often happens when family members of a celiac patient are being screened for celiac disease.
  • There is another disease process that is resulting in an increase in tTG levels (e.g. usually marginal increase in tTG levels can be detected in Giardia infection).

It would be best to review all the reports including the biopsy slides and stay on a gluten containing diet till a diagnosis is made. Genetic study to look at the HLA markers and a repeat biopsy after a few months would be useful in arriving at a diagnosis.

Does the biopsy need to be repeated in children who were diagnosed before the age of 2 years?

It is a general recommendation by some expert bodies to repeat a biopsy for these children after they have been on a gluten free diet for 2 years. Another biopsy is recommended after a gluten challenge of 8-12 weeks.

This is recommended as histology of many conditions in this age group resembles celiac disease.

When is it recommended to repeat the biopsy?

At what age can endoscopy be performed?

Endoscopy can be safely performed even in a newborn but in general, celiac disease rarely occurs below the age of one year. It takes the body at least 4-6 months to develop the intolerance after gluten consumption is initiated.

My son who is 17 years old today was diagnosed with celiac disease at the age of 7 years. Do we need to repeat his biopsy? Or can he now consume gluten containing food?

The biopsy is not required to be repeated for him if he fulfilled all the criteria at the time of diagnosis – symptoms, biospy and response to gluten free diet. He has to maintain a lifelong strict gluten free diet as celiac disease is a lifelong condition.

I have been advised to do a biopsy for my 4 year old child. His symptoms are not very severe. Can I wait for doing his biopsy when he is a bit older?

This would not be recommended by any expert body for several reasons as listed below:

  • Endoscopy is a safe and painless procedure
  • We would not recommend starting a gluten free diet without tissue diagnosis.
  • Delaying starting a gluten free diet in a celiac child may result in ongoing (and perhaps irreversible) damage.
  • The chances of developing another autoimmune disorder may increase while on a gluten containing diet.
  • Doing a biopsy on gluten free diet may not reveal the accurate pathology.

Watch the video about endoscopy to know more.

Why is it recommended that the immediate family members be tested for celiac disease even when they don’t have any symptoms?