The breastfed baby and gluten intolerance

January 21, 2011

You're normal . As normal as celiacs get. My kids are both gluten intolerant, diagnosed very young. I'm headed out the door but will tell our story when I get back.

Lynn

Hello Wise Ones,

We are all familiar with dairy and soy protein intolerances, but I'm

wondering if any of you have ever worked with a mom/s and baby duo

that have dealt with gluten intolerance? I am asking for personal and

professional reasons.

I have had 2 boys that were extremely slow gainers inspite of adequate

or more than adequate milk intake. If I wasn't an LC and had the

ability to monitor intake I would have pediatricians freaking out.

Anyway, long story short, my 7 year old (thanks to me and a lot of

research--oops that's another soap box) has finally been tested for

gluten intolerance and sure enough he's positive. When my baby (now 10

months old) started showing more and more signs that my older child

did I started to wonder if he too could be gluten intolerant. We are

already dairy and soy free, so that has been ruled out. Still slow

gain and delayed motor skills and reflux weird, weird poop, and...the

list goes on (all being gluten symptoms). From about 4 or 5 months on

his weight gain

dropped to like 1 or 2 ounces a week. However, after 3 weeks of gluten

free weight gain jumped to an average of 5 or 6 ounces a week (at 10

months old). I think he's playing catch up. So anyway, it is looking

like now that his gut has/is healed/ing, he is absorbing nutrients

sooo much better.

So, I guess the point of this e-mail is: Have any of you ever seen

this before or are we possible flukes? Is there any research out there

on this that I am just not finding? And I thought it might be good

information if you have or ever do have a client who's baby just won't

gain wieght inspite of all breastfeeding signs being good. I know it

is only anecdotal, but anecdotes have helped me with ideas immensely

over the years.

Deirdre Cannon, IBCLC, RLC

For Babies' Sake

Fort Worth/Dallas, TX

www.forbabiessake.com

January 21, 2011

Hello Deidre,

I have a daughter diagnosed with Celiac

Disease when she was nearly 4 years old. She was always thin and complained

about bellyaches, but either than those she grew very normally. Oh! Moreover, she

nursed even that *grand age* like a very young baby (6-8 times a day.) The only

reason we ever found out that she was ill, because she was away from me for

about 48 hours (no breastmilk) and when she came back home she bled rectally

for nearly 2 weeks.

As you guess after many tests etc, they

finally checked her for Celiac and it was positive. When I questioned why she

didn't show any developmental delays like a *normal* celiac baby would, both

the Professor Fasano at UM Medical School and the dietician at the Ped GI

clinic told me that it was because she was still nursing. Nursing was giving

her enough to keep her going. She was digesting enough to grow as well as Bmlk

was healing her inflamed bowels while the gluten shredding to bits.

Therefore, I would personally challenge those

twits in the UK

(being British, I am giving my self to make this judgement) saying that nursing

exclusively for 6 months increases the incidence of celiac. (The article in the

BMJ)

All said and done, where so many things

could go wrong I still feel we got away with it easily as all we had to do

adjust our diet and took out the gluten. My youngest showing the similar growth

rate (very thin and tall, diarrhoea if he eats more than a slice of bread, etc)

at home we all are GF.

Anyway, the second thing I wanted to

mention is Celiac positive mothers are more or less always overproducers. (Sometimes

it is very hard to keep their baby from drowning.)

In addition, a common mistake for many

people Celiac disease is not an allergy it is an autoimmune disease meaning

unless allergy (which can go away one day as it started) autoimmune disease is

here to stay with you until the end of your days.

Kindly,

Ann F.

Ann Faust, IBCLC, BA (Hons), RLC, LLLL, DA

BABY AND ME LACTATION SERVICES LLC

Pregnancy to Weaning All About Breastfeeding

www.BabyAndMeLC.com

annfaust@...

Facebook: Baby And Me Lactation Services

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January 21, 2011

My son was diagnosed with gluten intolerance at the age of 2.5 years. He nursed at least every two hours (more like hourly) around the clock until he was past 3yo, and continued until 6.5yo. Grew like gangbusters and didn't have solids at all until ten months, nothing more than a bite until 18mo.

I have read, though I cannot give a citation, that breastmilk stimulates the growth of villi in babies, and the act of nursing makes it happen in moms too. Perhaps this is part of the reason moms get more efficient about calorie use and can make milk without eating more?

His " catch-up " after diagnosis had more to do with language, fine motor skills, and temperament. He finally didn't feel bad all the time and his brain could get busy with other things. It was quite dramatic.

At this point, we are able to eat out at restaurants and generally not worry about cross-contamination or even tiny amounts of wheat, like what can be in soy sauce. I think he just has so many villi that he can handle losing a few here and there, and then he heals just fine. He had a massive exposure a few weeks ago when I wasn't there and someone who should have known better told him some lo mein noodles were gf. He got a bellyache but has bounced right back.

My daughter has the genetic predisposition for celiac, so we have never purposely exposed her. She did however have a substantial exposure to spelt at preschool, three days a week for a month, before the mistake was discovered, and she most certainly had bowel and mood changes. I am glad she was still nursing, because I figure it helped her heal.

I have no idea how early introduction of gluten could be a good thing, and I would never let one of my babies be a guinea pig for something that could potential be so terrible.

Lynn

January 21, 2011

I have personal experience with this with my children, and because of that have talked to many other moms over the last ten years. I would be happy to talk more if you want to email me. Celiac is much more common than is diagnosed in this country. Sonya To: Sent: Fri, January 21, 2011 12:57:35 AMSubject: the breastfed baby and gluten intolerance