Do you have celiac disease and would like to have a child? Then, like many others affected, you are probably wondering if there is anything you should or can do to ensure the best possible health for you and your child. In this article, I would like to explain the most important aspects regarding pregnancy and breastfeeding.

1. I have heard that it can be more difficult to get pregnant with celiac disease. Is that true?

Previous studies showed results suggesting that infertility occurs more frequently in untreated celiac disease. However, a 2018 Canadian study found no difference in the prevalence of celiac disease among women with unexplained infertility compared to women for whom a cause could be identified. Therefore, celiac disease did not appear to be the decisive factor. A large Swedish study from 2021 reached a similar conclusion. It also showed that celiac disease does not occur more frequently than average in cases of infertility. Treated celiac disease managed with a gluten-free diet is even less of an obstacle to fulfilling the desire to have children. Nevertheless, there are a multitude of other reasons why pregnancy might not occur as desired. A medical evaluation by a gynecologist should be considered after 6–12 months.

2. Should my antibody levels have normalized before I plan a pregnancy?

If you are planning a pregnancy, it would indeed be desirable for your antibody levels to have already normalized before you conceive. There are numerous ways in which celiac disease can negatively affect a pregnancy. For example, miscarriages are observed more frequently in women who are not yet on a gluten-free diet because they are unaware of their celiac disease. Babies are also more likely to be born smaller or lighter than average if a gluten-free diet has not yet been established. Premature birth can also be prevented by managing celiac disease with a gluten-free diet, as it is seen more frequently than usual in cases of untreated celiac disease. If you do become pregnant before your antibody levels have normalized, your gynecologist should closely monitor the development of the child to ensure that they are developing normally in terms of size and weight and to check for signs of premature birth.

3. Does an unintentional dietary slip-up have any impact on my unborn child?

A one-off dietary slip-up has no particular impact. The fact that this may cause discomfort does not immediately affect the development of the child. However, more frequent or even regular dietary slip-ups can, as just described, have unfavorable effects on the pregnancy. Therefore, you should indeed be very careful to ensure that dietary slip-ups do not become frequent. If you are uncertain, nutritional counseling before and during pregnancy can help give you more confidence with certain questions.

4. A parent, sibling, or child in my family has celiac disease, and I have not yet been tested myself. Should I be tested before I get pregnant?

The German Celiac Disease Guideline recommends (recommendation 2.4, Table 2.1) that women who have an increased familial risk of celiac disease because a parent, sibling, or child has the condition should be tested once before a planned pregnancy. This also applies to women who have an increased risk of celiac disease due to a corresponding autoimmune disease such as type 1 diabetes or an autoimmune thyroid disease (Hashimoto's, Graves' disease). The purpose of this is to detect previously undiagnosed celiac disease and to start a gluten-free diet if possible before a planned pregnancy in order to prevent negative effects on the unborn child.

5. Which vitamins and minerals require special attention during pregnancy?

Both in cases of untreated celiac disease and with a gluten-free diet, there are some vitamins and minerals that may be reduced and should therefore be monitored. For a pregnancy, it is beneficial if the woman’s body is optimally prepared and there are no deficiencies. Every woman should begin taking folic acid supplements as soon as she starts planning a pregnancy. This is to prevent a deficiency from leading to a neural tube defect (spina bifida, colloquially known as "open back"). Women affected by celiac disease more frequently have low folic acid levels; therefore, it is especially important for them to monitor their levels and ensure they take a vitamin supplement. If possible, intake should begin at least 6 to 8 weeks before pregnancy to ensure sufficient folic acid is available in time.

Vitamin B12 can also be low and is an important building block for the development of the brain and nerves.

An iron deficiency is the most common deficit observed in celiac disease. Many women also develop anemia as a result, because the production of red blood cells is throttled when iron stores are too low. If such anemia persists during pregnancy or occurs for the first time during this period, it can have negative effects on the unborn child, with a higher risk of premature birth or low birth weight.

Less attention is often paid to zinc levels, but these are not unimportant: zinc boosts the immune system and is required for the fetus to grow sufficiently. Both can be restricted in the event of a deficiency. Another point of focus should be bone metabolism with calcium and vitamin D, which should be given special attention. A sufficient supply of these nutrients ensures the bone health of the expectant mother and the proper development of the child's skeleton.

6. If I am breastfeeding and eating a gluten-containing diet, does gluten pass into the breast milk? Could this cause my child to develop celiac disease?

There is a recent study suggesting that gluten fragments are present in breast milk. Even if this has not yet been conclusively proven, it is certainly not unusual – components from other foods consumed by the mother are also found in the milk. This can also trigger allergies, for example to cow's milk protein, in exclusively breastfed infants. On the other hand, this contact with foreign proteins represents an important way for the child's immune system to become accustomed to these foreign proteins and to classify them as harmless. This process is called the development of "oral tolerance." This is an important immunological step: the body distinguishes between its own proteins, which it tolerates, and foreign proteins, which should actually be fought. In the case of our food, it recognizes the foreign protein but still tolerates it when it enters the body via the gut.

For a long time, it was unknown whether gluten also passes into breast milk. Now, a study has been able to prove that the gluten fragments absorbed through the intestinal mucosa are transported via the bloodstream. In this way, they reach the breast tissue and thus also enter the breast milk. This process of how food proteins are released into breast milk has not yet been well researched. These proteins appear in breast milk in very different concentrations and at different times after consumption. Whether their effect on the baby is sensitizing (i.e., disease-triggering) or tolerance-inducing is still unclear. Nevertheless, there is no accumulation of reports that celiac disease has manifested itself in a breastfed child. Symptoms of celiac disease are observed no earlier than after the introduction of gluten-containing complementary foods.

7. Do dietary errors have any impact on the breastfed child?

While frequent dietary errors before birth can have an undesirable effect on the unborn child, this is no longer the case after delivery. If the mother feels very unwell after accidentally consuming gluten, this can temporarily influence milk production. In particular, if nausea or severe diarrhea were to result in the mother having too little fluid in her body or being unable to drink enough, then the milk supply might also decrease. But in general, the child will feel very little of this.

8. Should a mother who does not have celiac disease herself eat gluten-free while breastfeeding?

No, that is not necessary. Even though—as explained in point 6—gluten fragments pass into breast milk, it is not known that this contributes to a more frequent or earlier onset of celiac disease in the child. There is now a great deal of research on the influence of breast milk on the development of celiac disease, allowing for well-founded conclusions to be drawn on this matter.

9. Should a mother definitely breastfeed her child to prevent celiac disease?

Breastfeeding is the best form of nutrition for the first 4 to 6 months of life for a variety of reasons. However, from the perspective of potentially preventing celiac disease, breastfeeding is not necessary. Gluten-containing complementary foods should not be started before the 17th week of life (older than 4 months). It has now been shown in several studies that breast milk has no protective effect on the child against developing celiac disease. Therefore, while it is naturally desirable for a baby to be breastfed, if there are reasons why it is not possible, the child will not develop celiac disease because of that. This should relieve the pressure on mothers to feel they absolutely must breastfeed to prevent celiac disease.