Jump to content
  • 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):



    Celiac.com Sponsor (A1-M):


  • 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):



Celiac.com Sponsor (A8-M):



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
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):



Celiac.com Sponsor (A8-M):



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
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
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):



  • Member Statistics

    • Total Members
      131,552
    • Most Online (within 30 mins)
      7,748

    judytay080
    Newest Member
    judytay080
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.