Coeliac disease and breastfeeding

There is very little information available for breastfeeding mothers who may be concerned about coeliac disease and their breastfed baby. ABA asked Penny Dellsperger (BSc (Nutrition), Accredited Practising Dietitian and coeliac disease expert) questions about this topic:

1. Is it possible for a baby to develop coeliac disease while still exclusively breastfed?

No, it is not possible for a baby to develop coeliac disease while only being breastfed. For coeliac disease to develop, an adequate amount of gluten needs to be eaten regularly. This means that it is only once gluten containing solids are introduced to the diet that it is possible for coeliac disease to occur in an infant. Gluten is a protein found in wheat, rye, barley and oats. Main sources of gluten include pasta, bread and cereals. An ‘adequate’ amount of daily gluten (to make it possible to stimulate coeliac disease) for children is considered to be the level found in two slices of wheat based bread.

2. My child has been diagnosed with coeliac disease and I’m still breastfeeding; do I need to stop breastfeeding or remove gluten from my diet to protect him?

 

No, there is no need for a mother to stop breastfeeding or to remove gluten from her own diet if her child has been diagnosed with coeliac disease. Breastmilk (even from a mother who eats gluten) will not contain enough gluten to cause symptoms or bowel damage in a breastfed child.


3. What should I do if I think I or my child may have coeliac disease?

 

There are three steps involved in diagnosing coeliac disease:

i. Keep eating gluten: The first and most important thing is that gluten must be included in the diet at the time of testing.

    • This means that gluten must have already been introduced to your baby’s diet for coeliac disease to occur and an adequate amount of gluten needs to be regularly eaten for testing (approx. two slices of wheat-based bread daily for children and four slices for adults).
    • Do not remove gluten from the diet prior to testing. This will interfere with any tests for coeliac disease. A ‘gluten challenge’ for 6–8 weeks will be required if gluten has already been removed from the diet.

ii. Blood test: your GP or paediatrician can arrange for coeliac disease blood tests to be done. These tests look for levels of antibodies in the blood. An elevated result indicates a higher risk of coeliac disease.

    • It’s important to remember that these antibody tests are not 100% accurate, and false positive and false negative results occur more frequently in young children. Discuss any unexpected results with your doctor.

iii. Small bowel biopsy: A paediatric gastroenterologist will perform an endoscopy to confirm a diagnosis of coeliac disease when antibody levels are elevated or if clinically warranted. This is a day procedure done under light sedation.

4. Is there anything you can do when introducing gluten to prevent coeliac disease? 

Breastfeeding is highly recommended if a child is known to be at risk of coeliac disease. This is not because breastfeeding will prevent or reduce the risk of developing coeliac disease, but rather due to the importance of breastfeeding. There is limited research that suggests that breastfeeding for more than 6 months may only slightly reduce the age of onset, but it will not prevent the development of coeliac disease.  The only known conclusive determinant of a child developing coeliac disease is having the coeliac gene (also known as HLA DQ2 or HLA DQ8 genes).

The introduction of solids should follow the regular guidelines, where there is no need to delay the introduction of gluten containing foods or gradually increase the amount eaten over time.


For more information visit the Coeliac Australia website.

Mothers’ stories

Karin’s story:

Both my children had weaned by the time coeliac disease became apparent, but here are their stories. My son, Hudson, was fully breastfed to 6 months and after a rocky start fed to 14 months when he weaned himself. It wasn't until he was just over 4 years old that I began to notice symptoms of coeliac disease. Hudson’s maternal grandfather, paternal grandmother and paternal aunt all had coeliac disease so I was well aware of the symptoms. Within half an hour of his morning porridge my son was doubled over on the couch complaining of sore tummy that would then give way to diarrhoea for the next few hours. Hudson had blood tests, followed by a gastroenterologist visit which was followed by an endoscopy and biopsy which confirmed coeliac disease. He was diagnosed when he was 4.5 years old. Because her brother had been diagnosed it apparently increased my daughter (Molly’s) chances of having coeliac disease by 10%. Molly was fully breastfed until 8.5 months and continued to feed until she weaned herself at 2 years and 3 months. Molly showed no signs or symptoms of coeliac disease and after a blood test and visit to the gastroenterologist he suggested that due to lack of symptoms and inconclusive blood tests that an endoscopy wasn't needed perhaps just watch for symptoms, as he didn't think she had coeliac disease. I requested an endoscopy (I had a feeling) which was again inconclusive until the biopsy result showed she had coeliac disease. Interestingly after being on a gluten-free diet for 3 months she slept through the night for the first time in her life (a possible symptom I had overlooked)! Molly was diagnosed when she was 3 years and 1 month old. Both my children have been gluten-free for 6 years which can very occasionally be tricky (birthday parties mainly), but we manage to find plenty of gluten-free options for them. They are both busy active kids and coeliac disease has very little impact on their life.

Amanda’s story:

My son, Will, was breastfed for 12 months and I did go off gluten for about 4 months of the first 6 months and then re-introduced it when he started solids and was having gluten himself. I went off gluten as he would get eczema as a baby and my naturopath instructed me to cut gluten out of my diet as I was breastfeeding. I did notice this helped, however once he was introduced to solids the gluten was re-introduced in both his and my diets with no signs of the eczema. Will started showing signs of coeliac disease when he was about 2 years old.  His nappies were mucousy and pale and went everywhere. He was extremely fussy when it came to meal times and he had poor weight gain. His skin started to go a greyish pale colour and he had dark circles under his eyes. He was diagnosed with coeliac disease when he was 2 years and 7 months old.

Chloe’s story:

I breastfed my eldest daughter, Daphne, until she was 2 years old. At 2 years and 5 months, after testing positive to both the blood test and bowel biopsy, she was diagnosed with coeliac disease. She had been failing to thrive, had iron deficiency and fatigue which all started once solids were introduced at 6 months, so she had coeliac disease while we were breastfeeding. Daphne is now 4 and doing reasonably well.

I breastfed my youngest daughter, June, until she was 22 months. When solids were introduced to June at 5½ months, she started failing to thrive and was constipated with hard black poos like rabbit droppings. These signs settled when gluten was removed from her diet. She received a presumptive diagnosis of coeliac disease even though her blood test can back as antibody negative (the tests are unreliable in babies).We decided to take her off gluten as an experiment and after about a week her gut improved and she started to gain weight. About 2 months later her poos went black again and she started losing weight again. We realised about a month after that that we had inadvertently been giving her gluten in a packaged baby food. As soon as we cut this out she improved again. We found out she was positive for the coeliac disease gene and discussed this with our gastroenterologist. He recommended we keep her off gluten strictly including no gluten for me whilst I continued to breastfeed until she was bigger and stronger and we could do a gluten challenge without her getting too unwell. I was strictly gluten-free the entire time I was breastfeeding June. On the couple of occasions I messed up and ate contaminated food she would immediately get black rabbit dropping poos for about a week. It happened too many times for it to be a coincidence.

Alyssa’s story:

My husband and I had never heard of infant coeliac disease prior to this year. While being exclusively breastfed, our son, Lachlan, showed no apparent signs of coeliac disease.

However, when Lachlan was 6 months old and our family was attending a BBQ, he reached out for a slice of bread. To our surprise, he ate the slice of bread with ease and was quite fond of the texture. Alongside bread, he was introduced to a myriad of organic fruit and vegetable purees that he enjoyed. It was also the week that he broke out in a spotty rash. A letter arrived stating a mild strain of chicken pox was being passed around and a doctor confirmed it was likely the case. We later discovered he was negative for chicken pox and the rash was the first indication of what was to follow.

The next three weeks, Lachlan proceeded to shed a drastic amount of weight and began losing interest in cruising around the house as he once had.

When we were finally admitted to the hospital to hopefully uncover the source of what was going on medically with our infant, I asked the paediatrician assigned, what would be the most likely diagnosis based on symptoms. She stated coeliac disease. She proceeded to order a coeliac test that was not considered sensitive nor deemed reliable for children less than 2 years of age. That night, I had already looked into infant coeliac disease, reached out to coeliac experts elsewhere for their opinion, and ensured we were both off gluten just in case.

Towards the fourth day of being gluten free, Lachlan had returned to being his cheeky self. The next morning, he sat up and began cooing with a giant grin. The test came back negative as we were informed to expect. The gastroenterologists we consulted who specialised in coeliac disease recommended that we disregard that particular test and continue investigating coeliac disease. They were positive it was infant coeliac disease and communicated with the medical team on our behalf.

Two coeliac experts we consulted from a larger hospital then informed us that a stomach biopsy is the only way to confirm coeliac disease. The biopsy would only be accurate if he was on gluten. At this point we were 2 weeks in and it was too late for a stomach biopsy, but not for genetic testing.

Lachlan continued to thrive with both of us off gluten. It took months, but the genetic test finally returned stating he was positive for HLA DQ2 – commonly found in individuals with coeliac disease.  We have also noticed several health benefits for myself from being off gluten and determined that I was likely sensitive to gluten as well.

A senior level paediatrician has since taken over Lachlan’s case and is recommending that we remain off gluten and proceed with a gluten challenge followed by a more sensitive test once Lachlan is school-aged.

Quinoa is the new staple at mealtime and we have recently discovered creative and interesting ways of continuing some of our favourite meals. Lachlan is now 10 months old and is still breastfed, and as always is breastfed on demand.

Chantelle’s story:

I breastfed my son, Charlie, until he was 1 year old.  Charlie was diagnosed a coeliac disease by a small bowel biopsy on his second birthday. He started displaying symptoms at 18 months - constant runny bowel movements (that filled his nappies and up his back, 3-4 times a day), vomiting, very swollen tummy, lost a lot of weight and behavioural issues. We originally thought he was lactose intolerant as he started drinking more milk and it tied in, but it was that he couldn't absorb the dairy due to the coeliac disease.

Bridgette’s story:

My first child, Isabel, was breastfed for 2 ½ years and was diagnosed with coeliac disease when she was 18 months. She started showing symptoms when she was between 14-15 months old. She was really sick before she was diagnosed, 7.9kg at 18 months and losing weight. Between her showing symptoms and being diagnosed with coeliac disease, I fell pregnant. I continued to breastfed Isabel throughout the second pregnancy. Before Isabel was finally diagnosed with coeliac disease, she was eating very little food (about one quarter of a cup per day) and jumped on for a breastfeed whenever I fed the baby (Thomas), so 3 hourly during the day, and only if she woke overnight. I continued eating gluten but as her diet hadn't changed yet she still showed symptoms. When we changed her diet to gluten free, I still ate gluten, though probably not as much. When we changed her diet she put on remarkable amounts of weight quite quickly. So, in regards to her putting on weight and beginning to thrive, my intake of gluten had no effect. However, if I ate a lot of bread, or a large volume of gluten, her poo was quite yuck again. Of course, as she began eating food her breastfeeds were not nearly as frequent as when she was diagnosed (maybe once or twice a day).

Thomas has not been tested for coeliac disease but I have put him on a gluten free diet too. It was quite traumatic seeing Isabel going through what she did and we didn't want to experience that again. We do believe he has coeliac disease too and we will wait to get him tested when the new 3 day only gluten exposure test they are working on comes into practice. I remember when he was about 4 months old (and had not started solids) I ate a lot(!) of yummy freshly baked bread and the next day he had horrible unexpected diarrhoea. I still believe it was because of the bread. He ate gluten for about 4-5 months and during this time he ate less and his weight curve stopped following the line. You can tell on his growth chart the moment I stopped giving gluten to him. He has had gluten a few times accidentally since and he always becomes cranky and has yucky poo. 

Jodi’s story

I breastfed my firstborn until she was about 21 months. She was diagnosed with coeliac disease by a small bowel biopsy and blood test at age 7. The blood test also showed she had an iron deficiency. In the 6 months or so prior to the diagnosis, she complained a lot of a stomach ache, was lethargic (would come home from school and have a sleep or just lie in bed for hours) and lost weight.  She also had a pattern of urinary tract infections. 

 

In hindsight, she had symptoms of coeliac disease from about 1-2.  She always had poos of an odd consistency and offensive smell, but being our first we had no idea it was not normal.  She also had a huge belly as a toddler. She stopped eating bread at about aged 4. 


Jemma’s story:

I breastfed all our children (Jack, Lily, Hugh and identical twin girls Matilda and Scarlett) until 12 months.

The twins were both exclusively breastfed for the first 6 months. Scarlett would never sleep longer than 2 hours, never really settled.  Scarlett was diagnosed with allergies to dairy, soy, egg and peanuts at 6 months of age.  When her diet was free of these foods (although she was still eating gluten as we were unaware of coeliac disease at this stage), her sleeping improved somewhat, but not as much as we expected.  She was still very clingy, mostly disinterested in food, irregular bowel movements (sometimes constipated), and also eczema and dry skin which didn't resolve fully after the allergens were eliminated.  

Matilda, however, for the first 6 months was a perfect sleeper and very placid, which I assume was because she wasn't exposed to gluten and had no allergies.  It was only when gluten was introduced that the coeliac disease became evident. At 12 months of age, Matilda was constantly bloated, had diarrhoea and was irritable. She was diagnosed with coeliac disease at 18 months by positive blood test and positive small bowel biopsy.

Being identical twins, we knew that Scarlett also had the gene for coeliac disease, but her symptoms didn't develop until 18 months of age (coincidently the same time she grew out of all of her allergies - I wonder if some of her allergy symptoms were actually coeliac disease symptoms). Scarlett had negative blood test results for coeliac disease, but I pushed for a small bowel biopsy, which was subsequently positive (mother's instinct is a great power!).

The rest of the family has had genetic testing for coeliac disease.  Jack, Lily, Hugh and I are all negative.  However, my husband (Matt) has the gene, but from small bowel biopsy, his disease isn't yet active.  Matt's father and sister also have coeliac disease.
 

  

Michelle's story:

 

I breastfed my son, Marcus, until just before he was 24 months old (exclusively for the first 5 months). Marcus was diagnosed with coeliac disease when he was 19 months old by a coeliac screen blood test followed by a small bowel biopsy. 

My maternal child nurse was concerned by Marcus's lack of growth at his 18 month check. There had also been concerns at his 12 month check as his weight gain then was very small but it was the fact that his height had also stopped increasing that prompted us to investigate further. Looking back at his growth charts, you can see he stopped putting on weight at 8 months when he was introduced to wheat. 

After starting a gluten free diet, Marcus put on one kilogram in a month and his temperament improved.

I never changed my own diet. It was never discussed and I never considered that gluten could transfer into the milk. Prior to diagnosis, Marcus preferred breastmilk to any other food - he "knew" it was safe.

Marcus has since recovered his weight and height and is a similar size to what his brothers were at 3 and a half. He has also developed into a very easy going boy. He is very talkative and has a great imagination.


Eliza’s story:

My daughter, Madeleine, was 18 months when diagnosed with coeliac disease and was breastfed until 12 months. Coeliac disease is in my family and my daughter is the third generation (that we know of) with it. I can't say for sure if my breastmilk affected her as I didn't experiment with a gluten-free diet myself at the time, but knowing what I know now, I personally feel it did affect her.

From day one she had awful bowel movements at every nappy change. When she started solids this continued and intensified.

Madeleine also struggled to put on weight (from birth), and at one stage lost weight, despite eating a lot and me having an abundant milk supply. She was classed as failure to thrive by about 15 months which is when I pushed for coeliac disease testing. She has always tested negative serology, but positive biopsy and gene. She is super sensitive to gluten and now vomits upon ingestion of it.

As a baby, it was common for her to have 6 to 7 poo explosions in a day, from birth right up until she commenced a gluten-free diet at 18 months. She was also a ‘spewy’ baby, fussy feeder and a poor sleeper - none of these settled until well after a gluten-free diet was established.  She also always had a hard bloated tummy, that didn’t dissipate until several months after commencing a gluten-free diet. (If she accidentally ingests in now, she gets a bloated tummy virtually straight away). Other symptoms that were always there included a pale complexion, heart murmur and skin rashes. Now she is a pretty normal 3 year old, smack on 50th percentile.



Yvette’s story
My husband was diagnosed with coeliac disease at the beginning of 2014 and subsequently my children were tested. My 8 year old, Will, was diagnosed with coeliac disease in August 2014 with a small bowel biopsy but has had no symptoms at all. My 5 year old, Lachlan, had an indeterminate biopsy result in April 2014 and is likely in the early stages, but again no symptoms. My daughter, Elodie, is 10 months old and too young to be reliably screened with blood tests and is growing normally. She will have a blood test sometime after 2 years if there is no reason for concern beforehand.

All my children were breastfed. Will to 9 months, Lachlan to 4 years and my daughter was exclusively breastfed until 6 months and takes some solids now, including gluten, whilst continuing to breastfeed. I have never been on a reduced gluten or gluten free diet.

Brigitte’s story:

My son, who is now 12 years old, was about 3.5 years old when he started to show signs of coeliac disease. The most obvious sign was explosive diarrhoea more than once a day. On a seemingly unrelated issue, we visited a behavioural paediatrician at the Royal Children’s Hospital.  My son wanted to be a girl and this was starting to impact our lives in many ways and we sought guidance.  A paediatrician observed him and also noted his restless behavior, very white skin and our description of the diarrhoea and suggested our son was very iron deficient. He suggested that our son be tested for coeliac disease. He was diagnosed with coeliac disease by biopsy when he was 4 years old. He subsequently started on a gluten free diet and all these signs resolved.

I cannot be sure, but I suspect my son’s symptoms of coeliac disease started when I ceased breastfeeding him at the age of 3.5.  I was pregnant again with my daughter and although he had been tandem fed with his older brother from birth until 2 years old, I did not have enough milk to satisfy him during the new pregnancy.  My own iron levels were low over this time and I put this down to my vegetarianism. Shortly after however, I was diagnosed with coeliac disease by blood test then biopsy and after going on a gluten free diet myself, my iron levels improved.

References:

Agostoni C et al 2008, Complementary feeding: a commentary by the ESPGHAN Committee on Nutrition. J Pediatr Gastroenterol Nutr 46: 99–110.

Akobeng AK, Ramanan AV, Buchan I, Heller RF 2006, Effect of breast feeding on risk of coeliac disease: a systematic review and meta-analysis of observational studies. Arch Dis Child 91: 39–43.

Ivarsson A et al 2000, Epidemic of coeliac disease in Swedish children. Acta Paediatr 89:165–171.

Ivarsson A, Persson LA, Hernell O 2000, Does breastfeeding affect the risk for coeliac disease? Adv Exp Med Biol 478:139-149.

Troncone U, Scarcella A, Donatiello A, et al, 1987, Passage of Gliadin into Human Breast milk. Acta Paediatr Scand76:453–456.

© Australian Breastfeeding Association March 2015

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