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Does This Sound Familiar To Anybody?


cgilsing

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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?

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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.

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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 :(

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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.

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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.

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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.

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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!

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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

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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.

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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!

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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.

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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.

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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!

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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

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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!

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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!

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    • cristiana
      Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve.  I read that sometimes a damaged trigeminal nerve in coeliacs can heal after adopting a gluten free diet.  I try to keep out of cold winds or wear a scarf over my face when it is cold and windy, those conditions tend to be my 'trigger' but I do think that staying clear of gluten has helped.  Also, sleeping with a rolled up towel under my neck is a tip I picked up online, again, that seems to bring benefits. Thank you again for your input - living with this sort of pain can be very hard, so it is good to be able to share advice.
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    • Nedast
      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. 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There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. 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Most cases seen by these dentists are complete successes, and the patient never has to come back again. But occasionally they get a case that is not a success, and I was one of those cases. A little over a year ago, I began seeing the second dentist who keeps my TMJ stable in this manner. The first dentist retired, and then died sadly. A shame too, because he was a truly amazing, knowledgable guy who really wanted to help people. The new dentist began to get suspicious when my joint failed to stay stable after I was finished with the bite splint and his modifications, so he did another scan on me. This is ten years after the first scan (remember, I said the surgeon saw "slight" damage to the tissue on the first scan). This new scan revealed that I now no longer have cartilage in the joint, on both sides - complete degeneration of the soft tissues and some damage to the bone. 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I am here to tell you, that if anyone says there is no potential relationship between TMJ issues and celiac disease, they are absolutely wrong. Just google TMJ and Celiac disease, and read the scientific articles you find. Research on issues regarding the TMJ is relatively sparse, but you will find the association you're looking for validated.
    • trents
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    • SuzanneL
      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
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