opinions about celiac passing through breastmilk..

[Anonymous]

Hi there–
I see that there are mixed opinions about whether or not gluten passes through breastmilk. What is your experience? What do you think?

Finn could be gluten sensitive or maybe celiac. I read the posts that say tests aren’t reliable until after age 3… So, I’m wondering how I can tell now. He doesn’t get any solids with gluten yet.

Thanks for your help!

[Anonymous]

Celiac has been brought up by both general ped & ped GI for Evan.

Our ped GI (his specialty is celiac & he speaks about celiac nationwide) said that baby has to be consuming gluten directly in order to test for celiac. So, my understanding is that you can’t tell until then.

Not sure if I answered your question though 😉

Hopefully Christine can chime in as she has celiac dc.

[Anonymous]

you could have him tested, just to see how the tests come out. we tested sylvia when we tested the whole family even though she was pretty young. in our family’s case, we know that 10 of us are genetically susceptible to get celiac since we have had genetic testing done. don’t know why it activated in the 3 girls and none of the rest of us. but, we know that we need to be tested periodically for the rest of our lives.

what makes you think that finn could have celiac disease?

you cannot become celiac until you have ingested gluten. some people claim gluten can be passed through breast milk—-but i don’t know if that has actually been verified.

if you suspect that your child has celiac disease it is NOT a good idea to take them off of gluten without having the proper testing done first.

[Anonymous]

Hi there,

My son is definitely gluten sensitive. He ingested gluten (from about age 11 mos utnil 17) and I ate gluten while nursing him until he was 17 mos old. At that time, he STILL couldn’t sleep for more than a 2 hour stretch and I was nearing the end of my rope. He’d had all the reflux testing done, and was on a strong dose of zegerid. He (and I because of nursing) were already off dairy, soy, beef and ALL acidic foods. Anyways, I took gluten out and he began to sleep so much better. It was a really quick difference I noticed, but it truly took about six months for hitngs to really turn around. We tested him for celiac with the blood test but at that time he and i had already been off gluten for over three weeks….I think maybe four or five weeks? The allergist thought this wasn’t a problem and said he tested negative for celiac disease. Over a year later, while at a ped gi appt, I mentioned all of this and our ped gi said that they generally don’t test for celiac until after age four. They feel that the gut isn’t mature until that time and he ALSO said that testing for celiac when he had already been off gluten for such a long time would give an unreliable result anyways. I always assumed that gluten passed through bmilk…just like everything else. It never occurred to me that it wouldn’t be in there in some form, whether just at the protein level or even cellular level. Where did you hear about it not being in breastmilk? I could have saved myself a lot of heartache, money, time and kept some weight on if I didn’t have to go gluten free back then! haha I’m not sure what to advise….I was so sleep deprived nad I know how it is to so desperately need sleep adn want your child to feel better. If it were me, even all over again, I would probably just take out the gluten to see if there is some difference. If the testing isn’t reliable until they are three or four, why not try something different now to see if there is any improvement? I hear what Christine is saying about keeping them on it so you can test, but if this is a young infant, maybe it’s a little different. Once they are older then you deal with all the food issues and emotional issues of eating or not eating certain things and it’s so much harder. The only reason we took out gluten was that my chiropractor had suggested taking out wheat and gluten and that thought lingered in my mind. Let us know what happens and how you are doing.

[Anonymous]

Thanks everyone– we are suspecting a possible gluten problem because he doesn’t seem to improve despite trying so many different treatments.
Anne–I only did a quick google search to see if gluten passes through BM and saw that there were different opinions. I didn’t fully research it. But you said that you did see a difference when you were nursing and removed gluten?
I actually was off gluten for about a month and all of gluten except for oats for the month before that. I didn’t see a change…but it was during all of our NAET treatments and I feel like other sensitivities could have also been affecting him.
I think I’ll try it just to see if it does help…especially if the tests aren’t reliable until he is older.
if you have a chance…check out this type of gluten testing and let me know what you think: http://www.enterolab.com
it was recommended to me by my NAET practitioner. they say you can be on a gluten free diet and still show up… but I haven’t looked into what they do for babies who aren’t actually ingesting gluten themselves… seems to make sense to wait.

[Anonymous]

i can tell you right now that if you test with enterolab that it is almost a 100% guarantee that you will be told that you are gluten sensitive since the list of genes that dr. fine considers to be “gluten sensitive” genes is HUGE. you’re also pretty likely going to be told that you have a casein intolerance. dr. fine doesn’t believe that anyone should consume dairy products. i just saved you a bunch of money!LOL!

he has never published his findings—–so there has never been any peer review to his work—–although he has been saying for years that he is going to publish.

my family participated in a celiac study that was done by the univewrsiy of california,irvine. to be eligible for the study. you had to have at least 2 family members that had been diagnosed with celiac by either biopsy or blood test. the lady that was running the study told me that they did not accept anyone into the study that had been diagnosed by enterolab—-i don’t think his work will be considered reliable until he publishes his findings and his work is shown to be reproducible in other labs.

oats do not contain gluten, but most commercial brands arte considered to be contaminated, so should be avoided by anyone wanting to be gluten free. however, there are a number of companies out there that are now selling guaranteed gluten free oats. they cost quite a bit, but i am willing to pay for them so we can make the “amish baked oatmeal” that we like so well. they’re great for meatloaf and meatballs, too.

kevieb2008-12-11 13:34:38

[Anonymous]

christine–thanks for the info. on enterolab! That helps A LOT.

[Anonymous]

Colleen,

Yes, i was nursing him, and then removed gluten from both my own and his diet (he ws 17 months old) and definitely saw a difference. BUT, he was ingesting gluten on his own and through my bmilk (if it goes through bmilk like other foods). I think I initially removed it from his diet but within a week or two did my own as well. I also removed all oats because of cross contamination issues. We have since been able to find Bob’s Red Mill gluten free oats and I’m sure there are other brands out there as well. I was very cautious of ANYthing that didn’t say gluten free initially. If your baby has never had gluten on his own yet, then you could remove it from your diet and see if there is a difference. I guess it all comes down to how miserable you are. I got to where I was so miserable that I didn’t care WHAT I had to do with my diet if it meant a chance at better sleeping. remind me, is he on prevacid or a ppi drug? We also needed zegerid– did much better on that than prevacid– and needed a high dose like those recommended by the Mid-west Acid Reflux Children’s Institute. http://www.marci-kids.com– you’ve probably already checked their site but just in case, it’s a great resource.

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