Breastmilk

[3boyzmom]

I am new to celiac disease and new to message boards... so bear with.

Long story: (for short to the point move on to bottom)

I strongly believe that my 3 1/2 year old has celiac disease. He had what you call a "Celiac Crisis" in Oct '03 in which he was hospitalized for 12 days with vomiting and severe abdominal pain, in which they did every test and couldn't pin point the cause and therefore had no treatment other than morphine to control the pain. He would feel better once he was voided (due to enemas or no eating) and the minute he ate (ie. chicken nuggets, hamburger, pancakes... all on the reg. diet doctor prescribed) he would have severe cramping again. Finally nutritionist did a blood test which showed anti-bodies to gliadin, which suggested Celiac's disease. So suggested a endoscopy and biopsy. Meanwhile, they still had him on "reg" diet, so I demanded he be transferred to a children's hospital in the area and he was immediately put on a gluten-free diet. While on the gluten-free diet he was completely fine. The day they sent him home biopsy tests came back indicating no celiac disease.

Minute we got home and resumed "reg." diet which included pancakes, saltine crackers and toast... pain resumed. So, I had a light-bulb moment and thought gluten-free diet=no pain, so resumed gluten-free diet and he got better... GI said on follow up visit, if it works then lets keep it up and he wants to re-scope again this summer to verify. I am petrified to put him back on gluten for any amount of time since when he has had relapses with accidental gluten ingestion, he has had severe cramping and pain. I have chosen to have lab work done at Enterolab to find out... (I know this is a hot topic).

Looking back at his history, it seems obvious that he has been celiac disease from beginning. He had weight and growth problems from 8 months old on (dropped from 90% to 15% by the time he was 15 months old) and doctor referred him to an endocronologist (hormone doctor) to check for hormone deficiencies.. there were none.. so we concluded it he was lactose intolerant which was why he was having diahrea and malabsorption problems. Not once did anyone suggest celiac disease.

Since hearing about it in Oct "03 and going gluten-free we find out my husbands cousin has it on mother's side and that my husbands maternal grandfather had lifelong bouts with stomach pain (undiagnosed celiac disease). I believe my husband has it as well.

Short story:

Since we think my 3 1/2 year old has celiac disease and I remember him having problems with my breast milk: gassy, explosive bowel movents, mostly green instead of orange, etc.. and I couldn't figure out what it was I was eating. With my oldest son, (non-celiac disease I think) he had orangy stool and only had green stool and was gassy when I ate spicy food or onions etc..) I was so careful with 3 1/2 year old, to eat bland foods, but in hindsight ate alot of gluten, and he still had problems. Now I have a 7 week old who is exhibiting same bowel issues. She is baby #4 and my #1 and #3 children did not have the same issues.

Now since, my 3 1/2 year old did not have weight and growth issues until he was 8 months old, and he was breastfed.. I wonder if gluten goes in the breastmilk and if it does, if it doesn't cause absorption problems as much as when they are eating solids with gluten.

Did anyone else have issues with breatfeeding with celiac disease children and what were celiac disease children's symptoms as babies... in hindsight for some of you...

[lauradawn]

I know there may be some different feelings about this....but I think that it most definately passes through the breast milk. The proteins in an offending food can cause harm to a baby. I nursed my twins for several months. They both had severe issues, but we were unable to pinpoint what the allergen was. We knew it was a food allergy, but I tried keeping a log, and avoided everything I could. I only ate straight meat, with salt and pepper. Potatoes and rice for a very long time. Nothing extra at all. Cut out all the typical allergens. Clearly I was still missing something, b/c when we finally decided that their health was deteriating, and we could no longer conintue to experiment at their expense, we put them on a formula called Nutramigen. It's a normal formula, but all the protiens are predigested so there is nothing left for the baby to have. All milk proteins all corn proteins all soy.....etc From the first bottle of Nuetramagin, we saw improvements. It was amazing. We honestly did not find out until most of a year later that they were having issues with dairy. Somehow I was missing something and it still passed through to them. If your baby is sensitive to anything, and you are eating it, he will probably respond.

As a side note....if you decide to remove an food group out of your diet ie diary soy corn gluten.... whatever, I learned that it can take up to like 3 weeks for it to completely eliminate all of the proteins, and it can take your child just as long. So don't go off of something and assume that he is not allergic to it, b/c a few days later he's not better.

I know it's frustrating but hang in there.

[seeking-wholeness]

Gluten definitely does pass into the breast milk. I am still breastfeeding my younger son, and several weeks ago now he reacted first thing in the morning to my gluten-contaminated bedtime snack from the night before.

As babies, both of my boys developed colic, which I traced to a (cow's) dairy sensitivity. My older boy had pretty bad eczema on his cheeks during his first winter, but I didn't even look for a food culprit since I was not yet educated about food sensitivities. My younger boy developed mild eczema on his cheeks and more serious eczema on his torso. The latter was connected to the (non-cow's) dairy that remained in my diet. After that cleared up, he developed huge patches of eczema on the backs of his lower legs that didn't seem to respond to dietary manipulation. However, here is where I learned about celiac disease, and sure enough--on a strict gluten-free diet, they cleared up nicely. (In fact, they were all but gone when he had a gluten accident that brought them back out of hiding...GRRR!!!) My older boy also had diarrhea from a very early age, but my younger boy (whose diet I kept religiously wheat-free) had apparently normal stools UNTIL I gave him RYE crackers to teethe on. Then, BINGO, he developed the exact same vile-smelling diarrhea his brother had had.

I hope this information is useful to you and that your little guy continues to thrive on a gluten-free diet!

[3boyzmom]

Thanks for your responses... am going to experiment with removing gluten and dairy from my diet... then reintroduce and look for reaction...

Thanks!

[lauradawn]

Just remember to give it enough time. It's hard when you have to wait a while, but you could determine it's not a problem when it is, but it was still in your system.

[travelthomas]

I found this little article on the celiac.com search engin:

"Dietary Proteins in Human Milk"

"Proteins ingested by mother can appear in the breast milk. There is well known disease in breast fed babies called eosinophilic colitis, which causes eosinophilic infiltration in the large intestine of the babies and clinically presents as rectal bleeding. The therapy is very simple: the mother stops ingesting cow milk and cow milk products and the babies do not have bleeding and they are completely well. Based on this clinical syndrome, the same possibility exists for the presence of gluten peptides in Human milk. Studies on this have been done by Dr. Reichelt."

It does look like there really is a problem with breast milk.

[travelthomas]

[3boyzmom]

Thanks guys!

Very helpful info, Thomas.

I will try to make sure I give it time...

[seeking-wholeness]

travelthomas,

Thanks for doing the research! I really doubt that any studies have addressed protein secretion into any bodily fluids other than breast milk, although it would be a fascinating research topic.

I can speak from personal experience that food proteins definitely DO transfer to breast milk, although I speculate that if a mother's gut were completely healthy and not "leaky" like mine is, this might not be the case. That's another important research topic that will probably never be studied!

[SadiesMomma]

...well...

I was not gluten-free when I was pregnant or after I had my daughter or really even till she was over a year old......

... Could my breast feeding caused her gastro esophigal reflux because she was underweight till I began feeding her formula (which she still puked up) till I put rice cereal in it. It then made her plump...

[seeking-wholeness]

Heather,

It's hard to say about the reflux. My friend (who should be writing to you soon--I gave her your e-mail address) has a 10-week-old with pretty serious reflux, and she has cut just about everything out of her diet and is not yet seeing any improvement in his condition. My boys had milder reflux that cleared up when I eliminated dairy (I didn't even have to eliminate gluten!). Every child seems to be different, and sometimes the problem is purely physical.

[SadiesMomma]

I quit breast feeding Sadie at about 9 weeks old or so. I put her on Enfimil w/ Iron but she was still puking. Then the doc recommended that Iput her on EnfamilAR which STILL didnt help so I began putting a scoop of Gerber Rice Cereal in her formula (Enfamil w/Iron) to help her keep it down. It thickens it up and makes it a lot easier to keep down. She started to finally gain weight.... The doc was satisfied!!!!! Her throwing up still happened but no where near as much as she had been.....she was getting enough calories to stay at least average weight. No worries though, she thinned out after she began eating normal foods, crawling, walking and running. You may want to mention this to your friend.

it may help her!.. have her ask the pediatrition.

Better to have a chubby baby than a malnourished baby!!!

[seeking-wholeness]

Thanks for the tip!

[Beantree]

I have a daughter with serious food allergies and I am very PRO breastfeeding.

My experience was this:

My daughter who is now 3.5 had what the Dr diagnosed as 'colic'. I do not put much stock in what a ped says about digestive issues so I figured it out on my own with an elimination diet. it was dairy and soy sensitivities. I quit wiht those and after about 2 weeks, she was a normal happy baby. It took a long time. Make sure you are not getting soem of the trigger ingredients in your diet.

My son is sensitive to dairy but not as bad. All that I see in him when I sneak some dairy is some reflux. When he was younger it was worse. No screaming fits that last for hours.

I simply made the diet changes myself.

There is no replacement for the benefits of breastmilk but it sure can be a challenge to find the trigger food. it is my opinion that children with food allergies need the bioavailability of breastmilk moreso than other children. I believe firmly that the nutritive properties of breastmilk willl help the gut heal faster IF there are no offending foods in the mothers diet.

I hope your friend finds the answers she needs to help her baby feel better. It really sucks to see your baby not well and feel helpless about it. Ugh!