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bzmomof3

Sleep Issues & Wheat Intolerance In Infant

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Hi I'm new to this forum. TIA for your help. Sorry for the length of this post.

I have an 11 month boy who I've determined has an intolerance to dairy and wheat. Here's some background info...

*Exculsively breastfed

*Extreme collicky for the first 3-4 months. Cried almost 24 hrs a day.

*Primary symptom -- the INABILITY TO FALL ASLEEP. Has never slept well day or night from the beginning. At the worst aprox 8 mo old he was waking every 1-2 hrs all night and I would be lucky if I could get one 1hr nap in during the day. No matter what we do rock, walk, drive in the car he will not go to sleep.

*Other symptoms would be general fussiness, some gas, restlessness, hard time relaxing.

*We would use Gripe Water (made from fennel seed) to help him when we was at his worst. This seemed to help him most of the time. When it would kick in he would melt.

*I have been off obvious dairy pretty much from the beginning. At about 8 mo I also went off hidden dairy. At this time we saw some improvement which gave us hope at that time.

*At about 9 1/2 mo old I went off all wheat. Almost immediately DS drastically started improving. He is not at 100% by any means but is sleeping much better than he has ever in his life.

*I introduced solids at around 7 mo. He was pretty much not interested at all. Eating maybe 1-2 Tbsp of food 1-2 times/day. Within a very short time after I went off wheat he started eating tons of solids. It's like he's starving. I'm still breastfeeding with no intentions of weaning.

*DS has been in the 10 - 15% percentile in weight and height all along. To his pediatrician this is not concerning at all. To me I am concerned because his 2 sisters where in the 75% and 100%+ range all the time. Overall DS is healthy, developing well and got his 1st cold when he was 9 mo.

*My health has improved and I feel better not having wheat & dairy. I've actually dropped 5 lbs since I omitted wheat. Woohoo. Our family if vegetarian.

*There is no obvious known allergies in our family. But the more I'm learning I'm suspecting there may be some that we've never really understood before. I guess what I'm saying is we've never been tested for allergies.

MY QUESTIONS!!!

1. Is there anyone out there with wheat intolerance / celiac who has had major sleep issues with there babies?

2. Would you recommend getting DS tested for celiac?

3. With his primary symptom of not sleeping well would this indicate to you allergy or intolerance or celiac?

4. Are there any links or testimonies of sleep related food intolerances?

Thanks again for your help. This has been one of the most difficult years in my life. I am so thankful for others who are willing to share there knowledge with others.

-Brenda

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I really feel for you. It is so hard when you can't sleep well. My son was recently diagnosed with Celiac disease at 3.5 years old. He was a horrible sleeper!!! For the first two years of his life he woke up every two hours to nurse/drink. (He was breastfed for 9 months.) At least 2-3 times per week he would wake up at about 1 am and stay awake for hours. Even now he usually wakes up once per night. He also had no interest in solid food...and he's still a very picky eater. I tried to eliminate dairy when I was breast feeding as well, but I never really got any results. My son was also very gassy and spit up until I put him on soy formula (which also happened to be gluten free) at 10 months of age. If I were you I would do the celiac and full allergy panel. That's what we did with my son. After more than two years of trying to guess what he was allergic to, let me tell you: it's so worth it to know for sure. In my son's case he is not even allergic to milk, and in fact he has no allergies, but he does have celiac disease. The catch is that your son has to be consuming gluten regularly for an extended amount of time (1+ months) for the blood work to have decent results, and the blood test is said to be unreliable in children.

Does your child have any other symptoms such as distended tummy, diarrhea or constipation or appetite issues?

I really hope you can figure out what is causing your child's problems. :)

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My one child who had what the doctor called, "major sleep issues" had no sleep problems at all as long as he got to sleep on top of somebody. It didn't matter if he had been asleep 10 minutes, or 20, or 4 hours--as soon as we laid him down, he would wake up and scream his head off. Neither of my other 2 ever did anything remotely like that!

He did have problems keeping his temperature up as a newborn--he was the only big baby in the neonatal unit! We figured that had to have something to do with his need for human warmth, so we tried bundling him up, but he really hated that.

When he was 6 weeks old, he slept through the night. But I had to return to work when he was 9 weeks old, and he wouldn't take a bottle, so there went the sleeping-through-the-night! When he was a year old, we put him in bed with his older brother, and that worked great. And around about then, he stopped needing to sleep on top of people.

He probably has some kind of wheat issue; we haven't figured everything out yet, though. He also had a major problem with vaccines.

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Does your child have any other symptoms such as distended tummy, diarrhea or constipation or appetite issues?

Yes Jenny your son's sleep habits sound just like my son's. He wakes up in the night and is awake for hours!!!! We've tried everything to try to get him back to sleep.

I've just started reading about the above symptoms. I know he's never had diarrhea. Constipation? maybe on a rare occasion. Definately appetite issues in that some days he eats tons of solids and sometimes he just wants to nurse lots. Hard to tell at this point since I don't know how much breastmilk he's getting and then with frequent growth spurts who knows...

I'm not sure what a distended tummy would look like. Yes he's got a little round tummy but most kids tummy's seem to stick out don't they?

I've alot to learn. Thanks for your help and input.

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Fiddle faddle,

I got a smile out of reading how you solved your son's problem of needing to sleep on top of someone. Put 'em in with his brother! Brilliant! That's what siblings are for right? they must have been adorable together.

What's your spacing? I plan on contributing to the OP, but definitely my son had to touch a person to sleep as well. I never thought of putting him in with his brother.It would have been perfect payback because his older brother had stuck to us like glue for 2 years. I'm glad everyone is sleeping now.

That reminds me, Back to Brenda's kids! HEIDI

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brenda, my boys are 6 and 8 now, but YES, we had basically all the same symptoms.

My older - he was the most insomniac baby I ever saw. He came roaring into the world with raging , inconsolable colic and went 2 months without a nap unless he was being physcially carried. And I dont mean being pushed in a stroller, I mean carried, ON my body, until my knees felt like they were being ground to dust.

He had major BF-ing problems, FTT, and I was told to stop BF-ing him but that only made me want to succeed more so I managed to keep him Bf'd . Having recently completed an Ironman triathlon I can freely say, BF-ing that baby was tougher. Much. I did healfheartedly try an elimination diet, but at the time my DH was not yet DX'd so we didn't know from celiac.

My younger son, similarly insomniac. Also needed to be on a body to rest. He had eczema at 2 months old and I tried an elimination diet for that, but being a vegetarian, and being sleep deprived, overwhelmed with a new baby + a 2 year old, I never really got rid of all the hidden dairy. And I tried eliminating everything else EXCEPT gluten. Why not gluten? Well --- it was just too unthinkable, too hard. At the time they were saying BF babies could resist celiac. I was doing enough of my part (so i thought) just by BF-ing, did I have to give up every SINGLE thing I enjoyed?

Now that I think about it, if I had only given up gluten then, it's possible their entire toddlerhoods would be different. I won't go into it here and now, but motherhood has run me ragged, worked me to the bone with special needs, isolation , and illnesses and now the diet. Maybe I wouldn't be so burned out and lacking in reserves right now if we'd tried the gluten-free thing earlier.

Not to dump my baggage on you. Just to answer your question #1, my kids BOTH had major sleep issues and BOTH seem to be shaping up to be celiacs. (If you ask Enterolab they'd say no further proof is necessary but I'm not totally sure..).

So if you could learn from my story, perhaps a month of gluten-free could show you guys a lot. He is still exclusively BF? Wow, that is a lot on you. (I hope you get a mackin' mother's day prezzie!!) My son also had no intrest in foods til "late" - 9 months in our case. Ironically, his first food that he didn't refuse was his dad's gluten-free bread, which he loved! He used to like to pinch off pieces with his fingers. We had to call the doc and make sure it was OK for him.

How long have you been wheat free? Have you been gluten-free yet? Glad you are feeling good. HTH

Heidi

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For the record, I am NOT anti-vaccine.

However (there's always a "but!"):

My son's eczema started with a HORRENDOUS rash within 24 hours of his vaccines, and the dermatologist took one look and said, "this is definitely a drug reaction, what did you give him?" (Nothing but the vaccine, and he was 100% breastfed! In fact, I didn't introduce solids til 10 months because of the dang eczema.)

I did try going off both casein and dairy, just in case, with no change in his eczema (which was blistering and oozing all over his body). It did get quite a bit better as he got older, but only disappeared when I went off gluten and the kids became "gluten-lite" (because I refused to cook 2 different sets of meals). I'm convinced that he does have a gluten issue, but hubby disagrees.

I think gluten issues and our immune systems are all tied up with the vaccines and meds. Not necessarily caused by them--I do think there is a genetic predisposition. But definitely affected by them.

I would suggest that you hold off on as many vaccines as you think is reasonable, and only let them give ONE AT A TIME. There is NO long-term research on what the number of vaccines they suggest can do to an infant's immune system, or brain, or anything. (26 by 18 months?? 3 or 4 combined vaccines in each leg on the same visit? Are they CRAZY???? :ph34r: )

I know, they keep insisting that vaccines are perfectly safe--but, I repeat, THERE IS NO RESEARCH THAT PROVES THIS. And there's a heckuva lot of anecdotal evidence that they may not be perfectly safe, and I've seen an awful lot of posts here about vaccine reactions, so I would suspect that those of us with celiac and those of us with children with gluten issues have a much greater chance of having a bad reaction to vaccines, especially when they are given many at a time.

You might want to read http://www.chem.cmu.edu/wakefield/pro.html, This doctor wasn't even looking for vaccines--he was just doing exploratory endoscopies of autistic kids with IBS symptoms (translation: celiac symptoms) and found the MMR in the lining of their guts YEARS after it should have been gone.

Obviously, we don't want to see things like polio again. But we need to educate ourselves about what is really being injected into our babies.

I know too many moms who say their children were great sleepers until their 4month shots, or their 6 month shots, or their 15-month shots, and then their children were never the same.

Ironically, my daughter's reaction to the polio vaccine was to sleep for 36 hours straight. I didn't realize at the time that it was a serious reaction, and neither did the nurse on call, so it never got reported to the CDC, but it should have been.

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Yes Jenny your son's sleep habits sound just like my son's. He wakes up in the night and is awake for hours!!!! We've tried everything to try to get him back to sleep.

I've just started reading about the above symptoms. I know he's never had diarrhea. Constipation? maybe on a rare occasion. Definately appetite issues in that some days he eats tons of solids and sometimes he just wants to nurse lots. Hard to tell at this point since I don't know how much breastmilk he's getting and then with frequent growth spurts who knows...

I'm not sure what a distended tummy would look like. Yes he's got a little round tummy but most kids tummy's seem to stick out don't they?

I've alot to learn. Thanks for your help and input.

My son's tummy looked like he was pregnant, and was very round and firm. It's hard to tell because breast fed babies are usually so chunky! :lol: If I were you I would go off gluten yourself completely. There was a post about gluten possibly being able to enter a mother's breast milk! I would also avoid gluten foods for your son as well. If he does not improve then I would get him allergy tested and tested for celiac disease. Remember you must be consuming significant amounts of gluten to get a positive result. Normally I would say to get tested before going of gluten, but your son must be miserable and you must be going out of your mind! I remember those days...I hope things get better for your family.

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brenda, my boys are 6 and 8 now, but YES, we had basically all the same symptoms.

My older - he was the most insomniac baby I ever saw. He came roaring into the world with raging , inconsolable colic and went 2 months without a nap unless he was being physcially carried. And I dont mean being pushed in a stroller, I mean carried, ON my body, until my knees felt like they were being ground to dust.

Heidi and Brenda, do you have slings? Or Over-the-Shoulder-Baby-Holders? Those totally saved us. We put the baby on in the morning, and only took him out for play and diaper changes! As long as he was in the sling, he was totally happy! When he was in the car seat or stroller, he screamed.

Everyone told us we'd spoil him, and that we should let him scream it out, but they didn't have to live with him. We carried him constantly for a year, and then whenever he wanted to be carried (which was often)for another year , and he is now the easiest 8-year-old I know. He was also really, really good with his little sister (2 1/2 years younger), and was never ever jealous. He would carry her, hold her, sing to her, all the stuff we did for him. He still does, in fact.

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Thanks everyone for your encouragement.

I have been gluten free with the exception of oats for about 5 weeks. I have seen HUGE improvement in DS. He has never had wheat with the exception of one time. (small amt of homemade wheat bread). This week DS has taken 2-3 hr naps everyday and he is only getting up once at night during a 12 hr time frame. And the remarkable thing is I nurse him and he goes right back to sleep. None of this awake for hours stuff. Woo hoo :)

I can relate to you PacerNYC with not suspecting gluten. I had suspected dairy and I've been off dairy for quite some time but had someone told me 6 months ago to go off wheat I probably would have laughed in there face. And the amazing thing to me is how what I eat affects how my son sleeps. Who would have guessed that?

Thanks for the heads up on vaccines. I had been pondering refusing his vaccines for awhile until his sleeping had settled down. I can't correlate his sleep with vaccines since he was messed up from birth.

QUESTION? Is celiac and gluten intolerance and wheat sensitivities all the same thing? Or do people just use those terms interchangably as referring to someone who is sensitive to wheat and gluten in varying degrees?

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Thanks everyone for your encouragement.

I

QUESTION? Is celiac and gluten intolerance and wheat sensitivities all the same thing? Or do people just use those terms interchangably as referring to someone who is sensitive to wheat and gluten in varying degrees?

~Well celiac and gluten sensitivity are sometimes confused. I guess you coudl say "celiac" is the end result or manifestation of gluten sensitivity (aka intolerance), I believe the clinical def of celiac refers to villous atrophy. Most of us here on this parent's forum hope to prevent the villous atrophy from happening by catching it early.

~Gluten and wheat are different. Gluten is a protein found in wheat, but unfortunately for all of us here, gluten is also found in oats, malt, and barley, and some other grains.

Glad you are having good results. Fiddle, I had just about every form of baby carrier ever invented. I had a Maya sling, a Kelty backpack, a Baby Bjorn, I even had this Canadian thing which was like a soft backpack that could be used for younger babies (the baby faces the opposite way from the parent and rides lower than a regular frame backpack).

luckily...that phase is over anyway. Heidi

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I can't correlate his sleep with vaccines since he was messed up from birth.

QUESTION? Is celiac and gluten intolerance and wheat sensitivities all the same thing? Or do people just use those terms interchangably as referring to someone who is sensitive to wheat and gluten in varying degrees?

My older two WERE given vaccines--3 of them-- the day they were born. It was standard practice in the hospital, and I only knew about it because I insisted on not letting them take the baby back to the nursery area, so they had to do it in front of me.

(Well, they did try the standard, "We'll take the baby, you get some rest," and I got no rest because my baby was screaming loud enough to to wake the whole floor, and when I staggered back to the nursery to find out why he was crying, I found him alone in his crib. The nurses refused to hold him; they said he'd been fed and changed, so there was "nothing wrong with him screaming." So I insisted on his being with me, which immediately stopped the screaming.)

Back then, I had no idea of the risks involved with vaccines, and I had not been told in advance that it was standard practice to vaccinate a baby at 4 hours old. Besides, after 26 hours of induced labor three weeks before my due date, I didn't realize I had the option to say, "No, stop, I want to do some research on this first."

By the time my third came along, though, I had learned a few things, and I was able to stop them from vaccinating her the day she was born.

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~Well celiac and gluten sensitivity are sometimes confused. I guess you coudl say "celiac" is the end result or manifestation of gluten sensitivity (aka intolerance), I believe the clinical def of celiac refers to villous atrophy. Most of us here on this parent's forum hope to prevent the villous atrophy from happening by catching it early.

~Gluten and wheat are different. Gluten is a protein found in wheat, but unfortunately for all of us here, gluten is also found in oats, malt, and barley, and some other grains.

Glad you are having good results. Fiddle, I had just about every form of baby carrier ever invented. I had a Maya sling, a Kelty backpack, a Baby Bjorn, I even had this Canadian thing which was like a soft backpack that could be used for younger babies (the baby faces the opposite way from the parent and rides lower than a regular frame backpack).

luckily...that phase is over anyway. Heidi

So is anything with malt flavoring in it off limits too?? I wasn't aware of malt being a "no no" I'm still learning????????????

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Yep. Anything with malt flavoring is off limits, which pretty much eliminates most cereals. Fruity and cocoa pebbles, Dora stars and various specialty cereals are gluten free.

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It is sucha kick in the head when you go through a long list of ingredients on a product, and you're almost safe...nothing obvious on there......and then you see.......malt. augh!

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The one thing I do miss from the gluten days is malt-flavored Ovaltine. I used to give it to me kids, too, and tell them that it was chocolate milk (because it has no caffeine, so it didn't keep them up). And they loved it. Sigh....We need someone to invent a Rice Malt Ovaltine!!!

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    Etiquette books advise us to eat what is put in front of us when we are guests in someone’s home. They caution us at all costs not to insult our hostess. Rather, we are instructed to compliment the hostess on her good cooking, flavor combinations, and food choices.  But when foods are prepared in a cross-contaminated environment with ingredients we are allergic to, we cannot follow the old social constructs that do not serve us.  We need to work together to rewrite the rules, so that we can be included in social gatherings without fear of cross-contamination, and without offending anyone.
    Let’s figure out how to surmount these social situations together.  
    Each edition of this column will present a scenario, and together, we’ll determine appropriate, polite, and most importantly, safe ways to navigate this tricky gluten-free/food allergies lifestyle in a graceful way.  If someone disagrees with our new behavior patterns, we can refer them to this column and say, “Here are the new rules for those of us with food allergies or celiac disease.”  When we are guests in someone’s home, we can give them links to this column so they understand the plight we are faced with, bite after bite. Perhaps this will help those of us living with us to understand, be more compassionate, and accepting of our adaptations to keep ourselves safe. 
    This column will present a scenario such as the one above, and ask that you comment on how you would navigate it. Let’s talk about it. Let’s share ideas.  Using the example above, here’s the scenario for this issue:
    What would you do?
    Your kind-hearted friend invites you to dinner and insists on cooking for you.  You arrive and the first thing she says is, “I’ve spent all day making this for you. Oh, I bought this salad dressing for you, but you might want to read the ingredients first.”  You do, and it contains malt vinegar.  You look around the kitchen and notice evidence of cross-contamination in the rest of the meal.  What do you do? 
    Please comment below and feel free to share the tricky scenarios that you’ve encountered too.  Let’s discuss how to surmount these social situations.  What would you do?