Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):
    GliadinX



    Celiac.com Sponsor (A1-M):
    GliadinX


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Does This Sound Familiar To Anybody?


cgilsing

Recommended Posts

cgilsing Enthusiast

My son, Ian, is 7.5 months old. His eating and bowel habits have never been normal. When he was a newborn he screamed ALL the time, had more gas than I thought possible for a newborn, projectile vomited, and EVERY diaper was dirty. They told me he had reflux and put him on Zantac, which did seem to make him happier and cut down on the gas, but his problems never REALLY went away. He looks like he is perfectly healthy. He is active, happy, and big for his age. But he still has about 4 big dirty diapers a day, a LOT of gas, and eats non stop. He is still getting up 2-3 times a night for a bottle because he just can't stay full. He will eat 9oz and then be starving 3 hours later. We put rice cereal in all of his bottles, he is eating baby food and cereal well....but has not progressed at all to a more mature schedual. I have celiac disease and realize that it is very possible he does too, but he is gluten-free...so it shouldn't be causing symptoms even if he does have it. Our pedi told us today she is going to refer him to a GI. I know a lot of you have experience in a number of different bowel conditions. Does this sound familiar to anybody?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Tierra Farm
Lakefront Brewery



Celiac.com Sponsor (A8-M):
Authentic Foods


Guhlia Rising Star

Wow, you could be writing about my little Tori. Thankfully she grew out of it as my pediatrician was useless. It took until almost two years old for her to stop spitting up CONSTANTLY. She never did the projectile vomitting, but she spit up between 3-8 times per feeding, even at over a year old. Hopefully you'll be able to figure something out with Ian. I definitely feel your pain. That's very frustrating.

Is he breast fed or formula fed? If he's breast fed, you're 100% gluten free, right? This includes personal care products, nipple creams, etc. Are his personal care products gluten free? ie: no Aveeno bath, all his lotions...

If he's formula fed, what formula are you currently using? The high end formulas (like Neocate, Alimentum, etc.) are all super easy to digest, so they pass through the system much quicker than regular formulas.

cgilsing Enthusiast

Ian is on Nutramigen...it's made by Enfamil. I know he is 100% gluten-free. I've been gluten-free for several years and have the diet down pat...I check EVERYTHING that gets near him! Nutramigen is a hypoallergenic formula...so maybe that is it. He has an allergy to a protien in cows milk that prevents him from even eating the lactose free formulas. Our pedi said that he would outgrow that allergy, but when he was 6 months old we tried him on the lactose free to see how he did and he broke out in an awful rash! He is eating 3 baby food meals a day too. He eats 2-3 jars of the stage 2 food in one sitting. Everybody told me that he would stay full when he started eating baby food, but I haven't noticed any difference at all :(

Electra Enthusiast

My Hunter had that and he's 5 now and still throws up at least once a month. We had to mix cereal into his formula from 3 weeks old because he would spit up at least 3/4 of what he ate. I breastfed too but was never able to get him enough so we suplimented. He was tested for acid reflux and that came back negative and he was tested for some other intestinal disorders and those too came back normal, so they blamed it on allergies and he just continued to vomit. We had to take barf bags everywhere we went. He would start caughing, and then he would vomit up everything he just ate and then he'd go play like nothing happened. He just threw up the other night too UG!! I have been diagnosed with Celiac and my daughter has DH (which we are trying to get diagnosed) and I'm almost positive Hunter has Celiac too. He's become a very picky eater and used to have very soft (Celiac like) stools. He's 5 now so I don't check his stools unless he complains, but I still think there is a corolation there.

My son was not gluten free though and he's not gluten free yet, but if his results come back positive then he will be on a gluten free diet.

Guhlia Rising Star
  cgilsing said:
Ian is on Nutramigen...it's made by Enfamil. I know he is 100% gluten-free. I've been gluten-free for several years and have the diet down pat...I check EVERYTHING that gets near him! Nutramigen is a hypoallergenic formula...so maybe that is it. He has an allergy to a protien in cows milk that prevents him from even eating the lactose free formulas. Our pedi said that he would outgrow that allergy, but when he was 6 months old we tried him on the lactose free to see how he did and he broke out in an awful rash! He is eating 3 baby food meals a day too. He eats 2-3 jars of the stage 2 food in one sitting. Everybody told me that he would stay full when he started eating baby food, but I haven't noticed any difference at all :(

Funny, they told me the same thing about once Tori started solids, and I didn't notice a change at all either. Perhaps he needs more starch? I never tried upping Tori's starch intake, perhaps it would have helped. I wish I had some answers for you. I would bet that he's hungrier because of the hypoallergenic formula though. Is it pre-digested? I know, I know, that sounds so gross. Tori was on Neocate, an amino acid based formula. Ask your doctor about the starch they use for children with CP and other disorders. It's a starch or something that you add to the bottle and it's supposed to help keep the formula down in children who automatically vomit after feedings. Maybe that would help with the vomiting.

Also, my Tori refused stage 3 foods. She wouldn't eat anything with chunks in it. Have you tried any of those yet? Perhaps the thicker foods would help.

You may also want to explore other food intolerances once you get an appt. with the GI. It's possible that there are other issues there besides casein and gluten.

cgilsing Enthusiast

Thanks Angie, I'll ask the GI about that starch and maybe another formula. I haven't tried Ian on the stage 3 foods.....I guess I'm afraid he'll choke, since he practicly inhales his food :rolleyes: He's a big boy though....I'll give it a shot.

azmom3 Contributor

You're describing my oldest son when he was a baby. He projectile vomited after just about every feeding. We used bath towels instead of burp cloths and it would shoot out across the room. I breastfed exclusively for only 10 days, then started supplementing because he would scream non-stop, vomit what he ate, fussy all day, etc. We supplemented until about 2 months, then went formula only. We thickened his bottles with rice cereal. He would literally guzzle them down and start screaming again, projectile vomit, etc. We went through several different formulas ending up with Nutramigen. Went to numerous dr.'s. Every one treated me like I was a first time mom (which I was) being overprotective of him. He had chronic ear infections and asthma, too. Tonsils, adnoids, and tubes out at 4 1/2, then nothing until recently. He's now 10 1/2 and we are awaiting our first visit with the GI dr. after having abnormal bloodwork for celiac. I had never even heard of celiac until about 7 months ago. When they do the endoscopy, they will also be checking for EOS disorders as well, since our youngest was just diagnosed with eosinophilic esophagitis. You might want to read up on symptoms of this as well. It might sound like your child when you read symptoms and stories. BTW, my once chubby, healthy-looking (but not acting) baby is now a very pale, thin, sick 10 1/2 year old. I wish I knew to look for all this then. Good luck!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Holidaily Brewing Co.
Authentic Foods



Celiac.com Sponsor (A8-M):
GliadinX


happygirl Collaborator

How is Ian 7.5 months already? :) :) :) I love your picture...he is such a cutie!!!!!!!! I remember reading your posts during your pregnancy.

I don't have any magical advice as I'm not a mom, but I wanted to wish you luck and I hope you find some answers and Ian improves.

Laura

cgilsing Enthusiast

Hey Laura! I can't believe he is that old yet either! time has just flown by! I guess I should be happy that our pedi is going ahead and refering us to a specialist. I'm just so scared they are going to tell me that he has celiac disease! It doesn't really bother me ahearing to a gluten-free diet.....but I'm not a little kid either. I just want him to be healthy....I guess that is what we all want for our kids.

Sillyyakdidi Apprentice
  cgilsing said:
My son, Ian, is 7.5 months old. His eating and bowel habits have never been normal. When he was a newborn he screamed ALL the time, had more gas than I thought possible for a newborn, projectile vomited, and EVERY diaper was dirty. They told me he had reflux and put him on Zantac, which did seem to make him happier and cut down on the gas, but his problems never REALLY went away. He looks like he is perfectly healthy. He is active, happy, and big for his age. But he still has about 4 big dirty diapers a day, a LOT of gas, and eats non stop. He is still getting up 2-3 times a night for a bottle because he just can't stay full. He will eat 9oz and then be starving 3 hours later. We put rice cereal in all of his bottles, he is eating baby food and cereal well....but has not progressed at all to a more mature schedual. I have celiac disease and realize that it is very possible he does too, but he is gluten-free...so it shouldn't be causing symptoms even if he does have it. Our pedi told us today she is going to refer him to a GI. I know a lot of you have experience in a number of different bowel conditions. Does this sound familiar to anybody?

obviously, i am no doctor, but, I projectile vomited for about my first three years of life, so bad my parents could never go out to dinner, or anything like that, ... this turned into having bad teeth during childhood and always being hungry....led to getting very sick at college, finally diagnosed celiac....so, YES it sounds familiar to me!!!! I pray your little one doesn't have it, but if he does you are lucky that you will find out so soon in his life so little damage will be done!

Guhlia Rising Star

I forgot to mention that Dr. Brown's bottles helped a considerable amount for us with gas. It also, believe it or not, cut down on dirty diapers just a smidge and helped her stay full a little longer. I guess because of reduced air in her belly. It could have been timing too, who knows, but Dr. Brown's worked very well for us. They're God awful expensive, but they're so worth it. I wish we would have started off with them.

I can't believe it's been 8 months since your avatar was an ultrasound! It just doesn't seem like it was that long ago.

RiceGuy Collaborator

Well, I can only put in a word of caution about infant formulas. I read that many of them actually have MSG in them, in a hidden form of course. It can be very difficult to know, even when you are familiar with most of the typical additives which are used to do this. Apparently they do it to enhance the taste and get the child to drink it. But it can and does cause some serious reaction for many infants. MSG is on the list of ingredients known to be possible sources of gluten as well (see the site index on the left-hand side of the page). Perhaps the scariest news though, is that research studies suggest that brain damage to infants is many times worse than in adults.

Here's a link to some info, though you'll likely need to dig further to be certain the brand you are using doesn't contain MSG.

Open Original Shared Link

I do truly hope this is not the case for the formula you use.

loomis Rookie

I think it is a myth that solids help babies stay full for longer. Most solid foods are not as dense in calories as breastmilk or formula (with the exception of avocado.) I think the waking up at night to eat is pretty normal. I know lots of babies that do that at who are over 1 yr. I think it is pretty normal for babies to be hungry all of the time too! My 13 month old and my friends' 13 month olds are constantly eating and i know several 13 month olds that still wake up 3 times a night (mine included.) I think that the sleeping through the night might be more of a learned behavior but am not sure....

That said...there could certainly still be something wrong with your little guy's digestion but as long as he is growing and gaining well i wouldn't worry too much about it. If you feel really worried though, i encourage you to trust your intuiton and talk to your doctor since you know your child better than anyone else!! (certainly much better than me lol)

i know how tiring all the night waking is but you sound like you are doing such a great job! Your son is lucky to have such a patient and enduring mama! Great job!

shan1523 Rookie

Hello

I dont have advice but feel for you...I have a 2.5 year old with celiac, and and a 6 month old with severe reflux and milk soy protein intolerance who still gets up 2-3 times a night to eat....she doesnt eat much at a feed though...but still eats frequently...she was on nutramigen for awhile but she improved almost 100% on neocate...she is gluten free...she is all food free in fact until 9 months due to her issues and family history....we did try solids a few times (like you we were hoping she would stay full and sleep more) but it backfired as she cant tolerate any food at this point (rashy, excema and mucousy stools from solids just like with any formula besides neocate)

Good Luck...and hey at least they say the reflux will be outgrown!

Shannon

ds 6.28.04 celiac

dd 7.13.06 GERD, apnea, MSPI

shayesmom Rookie
  cgilsing said:
My son, Ian, is 7.5 months old. His eating and bowel habits have never been normal. When he was a newborn he screamed ALL the time, had more gas than I thought possible for a newborn, projectile vomited, and EVERY diaper was dirty. They told me he had reflux and put him on Zantac, which did seem to make him happier and cut down on the gas, but his problems never REALLY went away. He looks like he is perfectly healthy. He is active, happy, and big for his age. But he still has about 4 big dirty diapers a day, a LOT of gas, and eats non stop. He is still getting up 2-3 times a night for a bottle because he just can't stay full. He will eat 9oz and then be starving 3 hours later. We put rice cereal in all of his bottles, he is eating baby food and cereal well....but has not progressed at all to a more mature schedual. I have celiac disease and realize that it is very possible he does too, but he is gluten-free...so it shouldn't be causing symptoms even if he does have it. Our pedi told us today she is going to refer him to a GI. I know a lot of you have experience in a number of different bowel conditions. Does this sound familiar to anybody?

With the formulas, it really can be difficult to find another potential allergen as the ingredients are impossible to pronounce, much less trace back to what it's derived from.

Since you're looking at a potential gluten problem and definite dairy problem....I'd advise you to look at the soy. My dd couldn't tolerate most of those formulas at all. In retrospect, we were "lucky" in that the real problems began appearing at a time when we could begin weaning (I had breastfed for quite a while). I've heard other mothers complain of the same issues and so far, the "best" formula for them has been Neocate. Perhaps you could look into switching?

Also, my sister encountered some issues with her baby girl when starting cereals. Some rice cereals contain soy and others are enriched with gluten. If you can find a cereal that is free of most common allergens...you may be able to alleviate this a bit. If you can't find an allergen-free cereal....then why not take all of them out of diet and work on vegetables, fruits and meats for the time being? Many countries put off feeding cereals to babies for a year or more as carbs are much harder for an infant to digest.

I know that a lot of this is going to be very difficult with such a young child...especially with switching formulas. Depending on your location, there are also breast milk exchange groups where you might find a suitable donor who happens to be on a gluten-free/cf diet. This is different than an actual breastmilk bank in that the members donate their breastmilk. It is much more reasonable in terms of cost (and sometimes, the cost is only in the shipping).

Sorry if this isn't as helpful as it could be. Best of luck and I hope you find answers soon!

hedra Newbie

The puking and GI issues sound a lot like my second son, who was dx with Milk/Soy Protien Intolerance, which is one of the 'easy' intolerances, typically outgrown by 2-3 years of age. Later, he was dx with both lactose intolerance and fructose malabsorption, and we're (sigh) considering testing him (dietary management) for non-celiac gluten intolerance (he has the gene, but no GI symptoms or pos labs or biopsy results). Sigh, sigh. But the MSPI, that was definite, and obvious. Screaming awful misery with vomitting with any dairy (even traces) in my diet while breastfeeding. Pulled all dairy, and he was fine. He was fine taking dairy directly at 14 months. :shrug: Typical 'recovery range' for MSPI.

However, several people I know whose kids had MSPI, the child also had or ended up with other intolerance issues down the line - sometimes a year or many of 'no signs of anything wrong' followed by gradual signs of something wrong. So worth staying on top of that.

A trial of a fully (Not partially!) hydrolyzed formula may be a good first step (talk to the GI about it!). About 25% of kids with MSPI can't tolerate the partially hydrolyzed formulas (Nutrimagen, etc.), so the standard of care (gold standard) is to trial with something like Elecare.

The frequent eating isn't unusual, but the frequent pooping, and the heavy puking, WITH normal growth, is typical with MSPI. Reflux may also play a role, but that shouldn't affect the stooling pattern, as far as I know.

Good luck!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):
    Little Northern Bakehouse



  • Member Statistics

    • Total Members
      130,236
    • Most Online (within 30 mins)
      7,748

    Elaine Brostrom
    Newest Member
    Elaine Brostrom
    Joined

  • Celiac.com Sponsor (A20):
    Tierra Farm


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):
    GliadinX




  • Celiac.com Sponsor (A21):
    GliadinX



  • Upcoming Events

  • Posts

    • Zuma888
      I just got my test results after a less than 2-week gluten challenge consuming about 5 g of gluten per day on average.  Anti tTG-IgA: <0.2 AU/ml (<8 is negative) IgA: 180 mg/dl (Reference range is 70-400) I previously had been on a gluten-free diet for around 3 years or so, with occasional cheating and not being strict about cross-contamination. I am however still suffering from the effects of the gluten challenge (food sensitivities, slight brain fog, weird stool, fatigue, swollen thyroid, bodyaches). Is this likely to be NCGS rather than celiac disease given the test results and my history? Note: I have one copy of HLA-DQ8.
    • trents
      How long have you been strictly gluten free? Certainly, it would be good to look into vitamin and mineral deficiencies and supplementation. The B vitamins, magnesium and D3 are all very important to neurological health. Unfortunately, it can be difficult to reverse gluten-induced neurological damage damage if it has gone on for a long time. 
    • nataliallano
      Thanks Trents I'm strict with my gluten-free diet now. I just don't feel any better. I'm going to get tested for vitamins and minerals to see if I need some supplements. For sure I got some damage that doctors call Menier's and the only way they treat it is with medicine that does damage my body more than it helps.   
    • Zuma888
      Thank you Scott for your helpful response! Based on this, would you say someone who is on a gluten-free diet - but not strict about cross-contamination and occasional cheating - and tests negative for tTg-IgA while having normal total IgA is not likely to have celiac, even if they have been 'gluten-free' for years?
    • Scott Adams
      That’s a really insightful observation about antibody testing and the gluten challenge! You’re absolutely right that antibody levels can remain elevated for months or even years after going gluten-free, especially if there’s ongoing cross-contamination or occasional slip-ups. The immune system doesn’t reset overnight—it can take time for antibodies like tTG-IgA to normalize, which is why many doctors recommend waiting at least 6–12 months of strict gluten-free eating before retesting. For someone who’s been gluten-free for less than two years or hasn’t been meticulous about avoiding cross-contact, there’s absolutely a chance they’d still test positive, since even small...
×
×
  • Create New...