In Limbo, Could It Be Celiac,

[MammaW]

Hi there- some of you may have already come across what I am writing below as i have replied to a few postings with this same story, but I am writing this as it's "own topic" - if you will- to hopefully pick your brains:

My 11 month old has been having sleep issues since he was 8 wks old. He started with his first ear infection at 6 wks old, up all night crying, after the antibiotics he started sleeping throught the night and did so for a few weeks. At 8 wks old he started with this routine of going to sleep no problem...lay him down in his crib, he would fall asleep and then a few hours later he would start fussing, arching his back, acting like he was in pain. He also would get this terrible rash which eventually led him to the rheumatologist who ruled out rheumatoid arthritis, but referred us to an allergist who figured out he had some food allergies which was very interesting since we hadn't introduced food yet! Peanut and rice. We figured his rash was itchy and was keeping him up at night. I was nursing so I eliminated all rice and peanut and his rash cleared up! He kept on with the nighttime screaming though. Most nights he would wake every 30 minutes or so, sometimes screaming, arching his back, sometimes just whimpering. We then went the reflux route. Tried some Prevacid and miraculously after three days of being on it he went to sleep in his crib and slept 12 hours straight! This is a baby who just a week ago had been sleeping about 2-3 hours a night total. Well this was short lived and after about a week, he was back to his night misery. During the day he is great. happy, no diarrhea, no vomitting, no spitting up ever. just this night time pain. I will say that although he does not have diarrhea, he does have really foul smelling poop. We tried letting him cry it out- he would go on and on all night long....a week went by and besides feeling like a terrible mother, nothing changed. He has seen a neurologist, a gastroenterologist- who ordered an upper gi and ultrasound which were both fine. now they want to do an overnight sleep study with a ph probe and eeg. It occurred to me today that he has had lots of gas at night...I got to doing some research and came across celiac disease and called our pediatrician who ordered some blood work. He had his blood tests today and i dont know what i am hoping for. i guess i am hoping they are negative although i realize that doesnt necessary mean he doesnt have it. . for now, i dread the nights and just hope that he will just grow out of whatever is going on! So I have been perusing this site and found some great information. So I have decided to just try a gluten free diet for a month now that he has had the blood tests. My understanding is that even if I decided I wanted him to have a biopsy, he is so young it may not be conclusive yet? I have no intention of asking for one and would probably refuse even if it were suggested at this point. So I have a few questions to throw out there:

1)His only real symptoms are screaming (?stomach pain)and gas at night, and arguably really smelly poop: With a gluten free diet, any thoughts as to how long before I may see some improvement if indeed celiac is the culprit?

2)So this diet seems pretty strict as I read everyone's postings....I mean I even saw a posting for gluten free play-dough???? What is the deal with following the diet in terms of strictness? Are we talking a crumb will trigger a full blown misery attack of stomach pain? I have read about cross contamination: If a piece of bread touches his chicken do we get rid of the chicken????

3)Our doctor doesn't really think there is a high chance that it is celiac since probs started before he started solids, but I was nursing and I although I did eliminate peanut and rice (as he tested positive for allergies to, I never eliminated wheat) our doctor says that it is not possible for the baby to be exposed to gluten through breast milk ? something about the size of the molecule being too big? Anyone have any info on that? I don't necessarily buy it.

By the way, I forgot to mention that at 4 months (after being in the 90 something percentile) he stopped growing for 5 months and went down to the 5th percentil or something...just recently he has started growing again, but is now only in the 10th.

Ok, you guys are really the experts and I look forward to checking back to see what you have for info.

I will write with more updates as all of this unfolds!

thanks,

MammaW

[buffettbride]

1) Could be. The symptoms are consistent, but could be other things at well. Trying the gluten-free diet to see if it helps would be a stellar way to find out.

2) No gluten. Ever. Yes, you'd have to throw the chicken away if a crumb got on it.

3) Most doctors are in the dark about celiac. It's up in the air whether gluten passes through breast milk, but would you really want to take the chance?

[MammaW]

Wow, intense stuff. I would love an answer, so I am going with the diet business, but it sure is overwhelming! Thanks for your input!

MammaW

[Ursa Major]

Unfortunately, this doctor appears to be quite ignorant about celiac disease. It is a well proven fact that yes, gluten WILL be in breast milk, and can definitely cause a baby to have celiac disease, if that child has a gluten intolerance.

Please read this story that someone just posted. You don't want to go the same route! Open Original Shared Link

[buffettbride]

Wow, intense stuff. I would love an answer, so I am going with the diet business, but it sure is overwhelming! Thanks for your input!

MammaW

Even at such a young age, the blood tests could be extremely unreliable anyway, resulting in a false negative. Really the easiest thing to do is try the diet. I guess since your little guy is 11 months old, it would mostly be YOU on the gluten-free diet if you are still nursing.

It's really not super hard once you get the hang of it, but definitely overwhelming at first.

[mommyagain]

Most see at least SOME improvement in 1-3 weeks. A few are noticeably better within a couple of days... others take longer. To some degree it seems to depend on how much damage there is. Hopefully your little guy is young enough that there isn't too much damage.

The jury is still out on gluten in breastmilk. You will find "medical experts" on both sides of the fence on that one. My opinion is that gluten does pass in breastmilk... ANYTHING that you eat, baby gets (albeit a much smaller dose).

If it is celiac, then, yes, even a crumb can cause problems. Gluten molecules are very small and "sticky", if something with gluten touches something that was gluten free, the gluten-free item is no longer considered to be gluten-free. Most people with celiac kids (especially toddlers) end up making the whole house gluten-free, or just have some pre-packaged gluteny stuff around for the adults, but NOT when celiac child is in the room. The reason for this is two-fold, fewer worries about cross-contamination, and no need to explain to a 1yr old why he can't have that cookie.

Some people believe that you have to eat something for it to cause problems, but a lot of us seem to react to wheat in personal care products (shampoo, conditioner, etc) that we certainly don't eat... but maybe we touch our hair and then eat something? Most parents go with the gluten-free playdough simply because kids put their fingers in their mouths all the time, it's just safer to avoid having them touch anything with gluten.

The failure to grow could definitely be caused by celiac... it's a pretty common symptom for kids.

Overall, it sounds like your doc is at least exporing all the possibilities (even the ones he doesn't think are likely) so hopefully you'll get an answer soon.

[MammaW]

It is so great to have this forum as a resource....This is such a complicated topic! I have a 2 year old as well so this gluten free house won't be easy, but I am going to make an attempt. I am just hoping that if I don't see improvement, it will be because it is NOT a gluten issue and not because it IS a gluten issue and I am just not knowledgeable enough to eliminate the tiny sources... Does anyone know if the relationship between symptoms and food are linear? In other words, the more gluten, the worse the symptoms, or if for some reason I missed a tiny hidden source, he may have "a little gas" but not full blown? I am sure that can vary from person to person.

Thanks!

[buffettbride]

In other words, the more gluten, the worse the symptoms, or if for some reason I missed a tiny hidden source, he may have "a little gas" but not full blown? I am sure that can vary from person to person.

Thanks!

That is exactly the case. Everyone's reactions are different. No matter how much gluten my daughter gets, though, she has the same reaction (which is relatively mild to some). The only variable for her is how long until she's feeling better. More gluten = longer the reaction. That is about the only thing I've been able to figure out.

[gfpaperdoll]

I hope that you do try the gluten free diet. & yes, gluten passes thru the breast milk. If you cut out peanuts and rice & saw an improvement wouldn't you conclude that other foods he might have a problem with are also causing a problem via breast milk? I think because in our culture wheat is touted to be the most nutritious food, when in reality it is killing us, it is hard to wrap your brain around the information that it is harming your child.

I think that if you cut out all obvious gluten that you will see a huge difference. It will not hurt anything to give that a try, The only thing is if that is his problem, then after a couple of weeks, if you are eating any little thing that has wheat in it - in all likelihood, it will make him very sick...

this is a very serious condition in such a young child & I applaud you for doing your own research. the doctors are no help...

please keep us updated...

[aikiducky]

There is one scientific study that I know of that concluded that gliadin (the part of gluten that is the problem for celiacs) does indeed get into breast milk. You can read the abstract here:

Open Original Shared Link

Pauliina

[MammaW]

Ok....so today is our "quit date". As of today, we will be gluten free. I made pancakes for breakfast....(Bob's Red Mill) brand....not great, but not horrible either. I have some shopping to do! Ill keep you all posted. I have read everyone's replies and I am thrilled to have you all in my corner and can't thank you all enough.

Stay tuned!

[MammaW]

Update: So of course our bloodwork came back negative...I never really had high hopes for that confirmation though. soooooooooooo I am going to continue to keep my little man gluten-free for now and see what happens. still considering the enterolab option, but not sure - maybe if i see no improvement after being gluten-free for a while i'll go more that route just to have some more information. stay tuned!