Breastfeeding And Celiac Babies?

[ruhbehka]

Quick background: My 3 year old son has celiac, as does my aunt. My son has been gluten-free since 18 months, when he started acting "foggy". Tried re-introducing at 2 years, and within days his upper GI tract began to bleed, stools turned black, etc. Doctor said, "Can't think of anything else that would make sense, I agree, let's assume celiac. No more gluten trials, not even to do a biopsy or blood test, at least not until he's much older." My son also has a fairly severe milk allergy (positive tests, violent vomiting, we carry an epi-pen just in case, etc.).

Fast-forward to my daughter, who is now 3 months old. From birth, she struggles to gain weight. My milk supply is more than adequate, and she won't take additional pumped milk via bottle, either. She just plain refuses to continue nursing after she eats enough to maintain her weight. Doctors decide it's reflux, since she has some symptoms, and put her on Zantac. She begins to gain, but not at a great rate: 2 - 5 oz per week, generally around 3. Still seems to be experiencing some painful reflux, but has never spit up much, just cough/gag and refuses to eat enough to gain well.

I've always read that even celiac babies can't react to gluten until it's been directly introduced (not just via breastmilk), but obviously, given our family history and that she's still not gaining well, and since some celiacs also experience reflux... well, I'm just looking for anecdotal info.

Should I eliminate gluten (and possibly dairy?) and see if it helps? Or is everything I'm reading consistent with your experience, and even a celiac baby can't be "triggered" until actual solids (gluten) are introduced?

Rebecca

[ang1e0251]

I did not have this problem but I have read other posters telling how their BF babies reacted to both gluten and dairy that the mother ingested. I hope they will write in personally to you so you can get their direct stories. It certainly is worth a try. Can't hurt, might help, as the saying goes. Keep a food journal when you do it to show your ped how the cause and effect came together.

[mommida]

My daughter was reacting as an infant. I was undiagnosed at the time and consuming gluten. She was getting gluten and my antibodies via the breastmilk. Try the Gluten-free Casein-free diet. I don't think doctors will do any testing, except for the genetic test at this point and the elimination diet.

There are other possibilities for the symptoms you described. Find a specialist you are comfortable with for your son and your daughter. If an endoscopy is performed even "normal, healthy looking" tissue needs to be biopsied.

[elle's mom]

Rebecca,

Thank you for sharing your story, it is nice to know someone else is going through it. I would never tell anyone what to do, and there may be other circumstances that make our situations different, but I will tell you what happened to us and you can decide. Your story sounds very similar to mine:

My second child a DD, was "colicky" from the first night she was born-even when still at the hospital and they're supposed to sleep quietly for like 10 hours straight. Every time we went to a well-visit/weight check I 'complained' to the dr. She dismissed it as colic, and blamed it on her 'temperament'. My first DD was as healthy as a horse, exclusively breastfed, gained weight at an alarming rate, was always in the above 90th %tile. So with #2, when this didn't happen, I was concerned, but dr. just kept saying every child is different. I am petite, so she 'was also going to be petite'. She never reached the 50th %tile. Fast forwar 2 1/2 years, she ended up being diagnosed with celiac disease. Her bad 'temperament' that was present from birth disappeared. She's 4 now, doing quite well on her gluten-free diet. We had no family history and I never even heard of celiac until almost 2 years ago. About the same time she was diagnosed, I had #3.

#3, a DS, was not as bad, but was slightly fussy. I inquired about the gluten passing through the milk, since I exclusively breastfed again. Was told NO, it's too large a molecule. Accepted this as truth coming from an MD. Ended up giving DS Zantak, this helped a lot. Never pursued celiac further.

NOW #4, a DD, also 3 months, just like yours; started down the same path as #2DD........with ours they got VERY watery poops (even more than the usual breastfed poops)-very gassy-crying and uncomfortable most of the time. We started with Zantak, helped a minor amount. I started wondering and thinking about the fact that I had been told all along that gluten cannot pass through breastmilk. I started researching myself rather than asking the dr. Type in "gliadin and breastmilk" on google and there are numerous articles demonstrating the protein portion of gluten (gliadin-the harmful part) IS found in breastmilk. It is very interesting. I began a gluten free diet myself as an experiment when DD #4 was 4weeks. She showed a drastic improvement, even though I was still consuming dairy. After two weeks of that I had two nights in a row with a big ice-cream/gluten-free brownie sundae-yummy for me but BAD after-effect for baby. So, I stopped the dairy too---she's like a NEW CHILD. Content, sleeps 8pm to 6am, no watery poops etc. The proof is in the pudding:) Good luck with yours

[ruhbehka]

Thanks for the replies.

I'm on day 2 of gluten-free trial, to see if she improves. She gained NOTHING last week, so of course we're concerned. The current plan is to do 2 weeks gluten-free, and if she's not gaining well still, then do 2 more weeks Gluten-free Casein-free, and see if we get anywhere. We've been wanting to make our house 100% gluten-free for my son's sake, anyway, because we're concerned he's getting lots of cross-contamination... so the timing isn't bad.

Crossing my fingers that we get some answers in the next four weeks, and that she doesn't drop any more percentiles.

[flatoutgallop]

ruhbehka - my dd is very similar to your dd.

She is 3.5 months old just now, and is exactly as you describe your DD. Refuses to eat, even when she does - doesnt gain weight, etc... My DD is currently 3.2kg, or 7lb. More than adequate milk supply, and she just refuses it. Our paed has said its reflux too, and put her on Zantac, which has made no difference.

Ironically - I think Zantac has glucose in it...= gluten

Im about to make another post with my situation in it, and we are about to (tonight even) start a gluten-free diet for our entire family, as I suspect this is our problem, including myself and my other child as well.

[elle's mom]

ruhbehka - my dd is very similar to your dd.

She is 3.5 months old just now, and is exactly as you describe your DD. Refuses to eat, even when she does - doesnt gain weight, etc... My DD is currently 3.2kg, or 7lb. More than adequate milk supply, and she just refuses it. Our paed has said its reflux too, and put her on Zantac, which has made no difference.

Ironically - I think Zantac has glucose in it...= gluten

Im about to make another post with my situation in it, and we are about to (tonight even) start a gluten-free diet for our entire family, as I suspect this is our problem, including myself and my other child as well.

I forgot to post this on my previous reply; regarding the weight of my dd who is now on gluten-free breastmilk for the past 2 mos:

Birth: 7lb-8oz (50th%tile)

1 Day: 7-4 (between 25th & 50th%tile)

4 Day weight check: 6-15 (25%tile)

2 week weight check: 7-2 (between 10-25%tile)

1 month appt: 7-11 (10th%tile)

started gluten-free diet the day after that appt.

2 month appointment........11lbs (50th%tile)!!

Judge for yourself- I hope the same happens for you both. We were also considering a completely gluten-free house; my 4yo daughter is extremely happy to have a gluten-free partner since I have been.

I don't think Zantack has gluten, I'm almost sure I checked.........and I don't think glucose is gluten.

[flatoutgallop]

Wow, thats quite a difference!

My baby went

birth - 6.12

1 week - 5.13

1month - 6.3

2months - 7.1

3months - 7.13

4months - 6.14

My son was

birth - 4.8

2 weeks - 3.15

1month - 4.5

2months - 5.5

3months - 6.1

[elle's mom]

Your poor little ones!

I think it's easy to see a pattern lloking back after the fact, but sometimes when it's happening it's more difficult unless you're actually graphing it and can see the downward trend. My #2DD (the first and only one in our family actually diagnosed) showed a much more gradual path going down in the %tiles; she didn't REALLY start to slide back until she was between 18months and 2. By the time she was 2 1/2 her weight decline was visible to us, but we still had no idea what was going on. I know a lot of kids suffer for a longer time before they're diagnosed. We had a pretty good ped-he tested her right away. Thankfully, this time with #4DD once we noticed the pattern, we just said no testing just do the gluten-free diet.

[JustCan]

My situation is a little bit different but I thought I'd chime in anyway. I am gluten free and my 7 month old son is exclusively breastfed. For the first four months of his life, he had ezcema and would break out in an awful full body rash. He also spit up a lot and was very fussy towards the end of the day. I knew he wasn't getting gluten but obviously something was causing a reaction. Fortunately, he was gaining weight extremely well (always been in the 90th % since he was a week old). At his four month appt, the doctor suggested eliminating dairy to see if his skin cleared up. About a week and a half into doing that, his skin was much, much worse. I realized that I increased the amount of nuts and eggs I had been eating to make sure I was getting enough protein. At that point, we decided to have him tested for allergies and sure enough, he's allergic to nuts and eggs. Two days into eliminating those from my diet and his skin looked perfect, he was spitting up less, and the fussy time at the end of the day pretty much went away.

My reason for telling you all of this is that the medical community seems to think that only dairy/milk protein can go through breastmilk. It's time to do more research because that is definitely not true. As others on here said, their babies reacted to gluten and mine was clearly reacting to other proteins so it's obviously possible. Hopefully you'll find your answers after going gluten free. Just make sure you're eating enough so your milk supply doesn't take a hit - I exclusively pump so I know exactly what I produce and I did lose a few ounces a day when we were trying to figure out what was causing the allergic reaction. Good luck!

[Pattymom]

I had similar issues with my dd, now 5, She was very small, very fussy, and very rashy, stinky mucousy Bm. I never did the reflux meds, but I did take out wheat and dairy first-her skin cleared up and other symptos improved some, took out gluten got about 90% better--it was a new life, finally took out soy and nuts for a while and then we were great. It does sometimes take more than a week for clear improvement to show, I would give it at least a month of gluten free, and do take out other foods if you think symptoms are better but not right yet.

We kept her off until 2-when the MD pressured me to put her back on and test her. We did, test was negative, and she didn't show any obvious symptoms. Until at her 3 year old check-up we realized her growth had basically stopped again. so from 3.5 on she is again gluten and dairy free ( tolerates and nuts and soy now) and doign pretty well--still very slow weight gain, but better than it was before.

I am very glad I trusted myself in her infancy and changed my diet ( my MD was "tolerant" of it but more amused then supportive-we don't go to him anymore) and saved her and us form a rough beginning, wish I had contined to trust myself.

Good luck,

Patty

[ruhbehka]

update

Well, a few days after I pulled gluten out of my diet, she was still not gaining, so I decided to pull milk, too, and sort it out later.

Four days later, she doubled her intake! The zantac didn't seem to be working very well, though, so the doctor just switched her to prevacid today. She is definitely eating better already, but we'll see if the prevacid helps, as well.

I am putting my money on milk as the culprit, but we're a gluten-free house anyway, so no big deal.

[Ahorsesoul]

Years ago (many many) I breast fed both my little ones. I eat healthy from all the food groups with whole grains. Both kids had horrible diarrhea that would run out of their pampers and drip all over. I carried extra clothes for baby and myself. They also spit up all the time. So both kids were reacting to the gluten I was eating since they were not getting any other food at the time. Yes, both kids are celiac and so am I.

Now that I know about celiac disease, I would have avoided gluten while breast feeding. It certainly wouldn't hurt.

[Generic]

Glucose is not gluten. It is sugar.

[JennyC]

We are another example of a baby reacting to gluten in breast milk. My son was born two weeks early and weighed 7 lbs, 10 oz. He continued to gain weight normally until he was after 6 months old, but he went through a ton of breast milk! As an infant he spit up (practically vomited) after every time he ate. He also had three horrible FOUL smelling stools each day. The doctors could never understand how a small breastfed baby could have foul smelling stools (that could clear a large room of people), but looking back it was obviously due to malabsorption! Around 9 months I started him on solids and gluten quickly followed. When he was nine months old I switched him to formula and his spitting up disappeared but his malabsorption stools continued, but by that time he was eating solid gluten foods. It took many doctors, many tests, many diets to get to where we are today, and we are not ever going back!

[g1gg1e]

https://www.celiac.com/gluten-free/index.ph...&pid=295970

Gluten passes unchanged and in high amounts. It is completely possible that your LO is reacting...that is how we figured out...even with the head of childrens saying no way....well read that buddy