Breastfeeding and CSID Research and Surveys

I am collecting information regarding breastfeeding, digestive health in general and the CSID connection. To date, there is no documented research indicating that children with CSID present any symptoms prior to beginning solid foods. However, my son Parker DID show signs of failure to thrive, suffered from seizures and presented other symptoms related to CSID long before he had anything but breast milk.

Breastfeeding to strengthen digestive health

According to some studies on breast milk in general, the oligosaccharides found in human breast milk can reduce or prevent diarrhea. This information got me to thinking how my son, Parker, never had full-blown diarrhea, though his BMs were always oily, very smelly, and bulky compared to my other breastfed children. As many of you mothers out there know, breastfed infants rarely produce smelly BMs. Usually the “stink starts” when other food is introduced!

As a result, I would like to gather some more information in order to write a detailed article which touches on CSID, but reaches a broader audience of mothers who may not recognize this additional benefit to breastfeeding their child. Though CSID cannot be prevented by breastfeeding, my hunch is that it can definitely protect your child from developing other digestive diseases or infections due to an imbalanced gut. There is already proof that breastfeeding can have a “protective affect”on children susceptible to Celiac Disease.

Breastfeeding may have prevented my son from becoming severely dehydrated

When I think back to just before Parker was diagnosed with CSID, I recall the week before seeing his GI, he was very sick and lethargic. He was having several BMs, several in an hour at times, but nothing that appeared to be diarrhea. After receiving his diagnosis, I discovered that many children with CSID are hospitalized due to dehydration. Though Parker was hospitalized several times, the reason was always due to his seizures, not his digestive woes. Since I breastfed Parker until he was about 14 months old, adding only some solid food at nine months (most of which I removed from his diet since nearly everything seemed to exacerbate or increase his symptoms), I fully credit the benefits of breast milk as the sole reason he was never hospitalized for dehydration. However, breastfeeding may also have been the reason for his delayed diagnosis given it may have prevented the severe diarrhea that would have demanded the doctors attention!

Share your CSID and breastfeeding story connections

Of course, this theory cannot be proven for our particular circumstance. However, if we can band together and share our stories related to breastfeeding (or not) and try to find a connection, we may be able to help that child and mother facing undiagnosed digestive issues.

You will see two surveys posted on the left side of this blog. If you have a child with CSID or you suspect CSID or another digestive issue is the cause of your child’s health problems, please select the survey answers that best represent your situation. If you are interested in sharing your story in more detail, please respond by commenting on this post or by sending me an email.

Thank you so much for your support on this important topic!

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6 thoughts on “Breastfeeding and CSID Research and Surveys

  1. Heather Kimura says:

    Absolutely patently FALSE!!
    My son was close to death because I exclusively breastfed him.
    He had Genetic Sucrase-Isomaltase Deficiency.
    It does not matter how the neonate takes in sucrose/ maltose and breast milk contains both.
    At 22 days old he had frank blood in his diarrhea, cried 23 hours a day, breastfed aggressively, etc…
    Please Stop selling this false information. Both of my children have this genetic abnormality. Do not breast feed newborns with this defect. Dr. John Lloyd Still at Children’s Memorial was my sons gastroenterologist. I am not guessing, my son carries this gene. Because of crap like this on the internet- his wife will now try breastfeeding. What size coffin should I order?? Far too much pressure to only tell women to breast feed instead of telling us: breast feeding is preferred but if you child has a genetic abnormality treat it and stop breast feeding period.

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    • Roanne L. King says:

      Hi Heather,

      I’m sorry that your son had such a tough start to life. Nothing in my article claims that breastfeeding will prevent issues related to CSID. In fact, I wrote this in order to collect more information from mothers who breastfed children with CSID who were still sick. The current, limited literature on CSID claims that infants don’t show symptoms until weaned from breastfeeding. My son was in an out of the hospital for 18 months and could have been diagnosed much sooner if his doctors knew that CSID symptoms CAN OCCUR WHILE EXCLUSIVELY BREASTFEEDING. I make no medical claims and am not “selling false information.”

      My questions for you — 1) Were you on a CSID friendly diet while breastfeeding? I’m not implying this would have made a difference, but if you weren’t, don’t you think it’s possible that the sugar and starch in your diet could have been passed through your breastmilk? You claim that breastmilk has sucrose and maltose in it. Please site your source as my research indicates that breastmilk does not contain these carbohydrates.

      See https://www.ncbi.nlm.nih.gov/pubmed/392766 as one of my references. “Mature human milk contains 3%–5% fat, 0.8%–0.9% protein, 6.9%–7.2% carbohydrate calculated as lactose, and 0.2% mineral constituents expressed as ash. Its energy content is 60–75 kcal/100 ml.”

      Some children with CSID also have issues with lactose. My “guess” would be that your son possibly has/had a lactose issue. If there was a small bowel biopsy done to confirm your son’s CSID diagnosis, his lactase levels would have been known as well.

      2) You say “do not breast feed newborns with this defect.” How does a mother know her child has CSID at birth? What, instead, do you propose the mother feeds her newborn? Breastmilk changes to meet the needs of the child. There are protective benefits and elements in breastmilk science has yet to discover. When it comes to CSID, there are many, many variables — too many to state that mothers with children who may have CSID should or should not breastfeed. This is the main reason I published this post– to gather information about various experiences mothers have had with their children with CSID and breastfeeding so that doctors may hopefully come across this post and possibly prevent the suffering of another mother and child.

      3) How did you come to discover your children have CSID? Did you son have any other medical issues at birth (low birth weight, difficult, delivery, low blood sugar, etc.?

      You also imply there is a “treatment” for CSID? and that your son “had” CSID (or GSID). Again, I can tell you’re upset based on your experience with breastfeeding and still having a very sick child. My baby was sick too! He had multiple seizures daily and lost 13 months of growth as well as stopped developing cognitively prior to diagnosis. He was in the hospital on his 1st birthday. He was nearly exclusively breastfed for 14 months and was still sick! Doctors need to know that breastfed infants can show severe CSID symptoms.

      Again, I’m very sorry that your baby had such a rough start to life and that you believe breastfeeding somehow contributed. This is not a matter of true or false, but of all of us being willing to share our stories so other mothers and families with CSID experiences can know they are not alone,. At the same time parents, doctors, and dietitians need to know that every experience is different and each child’s treatment will vary.

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  2. Tami Taylor says:

    My son has always had frequent bowel movements but they became a lot more like diarrhea when I started him on formula. Twice I tried to stop breastfeeding because of medical reasons and regret it. When my son was failing to thrive (and still is!) I was told to put him on Elecare formula. He will not drink more than about 2 ounces a day. I have tried to get my milk back with success and am now breast feeding as much as possible (he is 10 months old) but I have to supplement. He has days where he does not want to eat anything. I actually just got test results back online from an endoscopy and found he has CSID. I have not been able to talk to his GI because of Christmas vacations and I live out of the Country and was home (in the states) for 5 weeks seeing all kinds of doctors trying to find out why he is not growing or eating (he went from 75 percentile to 5%). Going crazy knowing what to do and how to help him and what to feed him as he will hardly eat anything that is on the “okay ” list,

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  3. Teresa McCarthy says:

    My son Jameson now 4 years old wasn't diagnosed with CSID until he was 3 years and 9 months and he started showing signs of diarrhea at 10 months of age when solid foods were introduced. I breasted him until 1 year old and once we stopped breastmilk, I seen a significant increase in his loose bowels. Jameson has never been hospitalized for dehydration which I am very blessed for but I also believe 100% that it was because I breasted him until 1 years old because he has always been 99% or above for his height and weight. We now have another son who is only 3 weeks old so I plan to nurse again until 1 years old but at 11 months of age we are going to have a biopsy test to see if he has CSID and if he does than I will continue breastmilk for another year until he is 2 years of age because I truly believe that it will helps his insides so much more!!!

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  4. Amanda K. says:

    My son, now 16 months just got his diagnosis. I have been and am continuing to breastfeed him. Although several “professionals” say it would be better to stop. I just don't have enough data to back up that opinion yet. So we continue to try to figure this out.

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  5. Deb Kammerlander says:

    When I was a baby way back in April of 1969, my mom choose not to breast feed me. She said that she had tried it with my brother only 15 months older and was not successful. (Times were different back then) Anyways, my mom and dad said that they could tell something was wrong and not right with me by the time I was 3 days old. It took another 18 months to identify it and diagnos it. I was stricly formula fed and I can only but imagine that breast milk for myself would of been better.

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