How Long After "glutened" Until Kids Vomit?

[palooka]

Background:

My son is almost 3 years old. He weighs about 25 pounds, which is barely on the weight chart for kids his age. We cut out gluten when he was 14 months (he wasn't even on the weight chart at that time) and he started gaining better but he's still very very thin. I've never met or even heard of a healthy child who is as light as he is. 

About once a month he wakes in the middle of the night vomiting. The most severe incident occurred when he was 19 months and I gave him a slice of regular bread to "try gluten again." I gave him bread about 6pm, and he then puked from 2am until 8am. 

 

Current situation: This morning he has been puking since 6am, it's now 10:30am. He pukes any water or gluten-free crackers I give him, and now he's basically just dry heaving every 15 min. Yesterday we were at a kids' party and they got him gluten-free pretzels (yay!) but at the end of the party I noticed there were other pretzels there that looked very similar. I know I fed him only from his own bowl, but he was wandering around and I'm nervous he might have eaten the non-gluten-free pretzels. (he is VERY good about asking before he eats anything, I mean anything, because he knows some things will make him sick. but I told him the gluten-free pretzels were okay and I don't think he would have realized there were not-okay pretzels too) But that would have been about 12 hours ago. it seems like a long time between ingestion and vomiting. 

 

Is that normal for other folks/kids who vomit with gluten? He's had a blood test but it came out neg, but then again he was gluten-free at the time of the blood test. I have a referral to a per GI but I don't want to put him through the biopsy if the only outcome would be that we keep doing what we're already doing.

 

Thoughts? Please and thank you!

[CajunChic]

Maybe he has a stomach bug of some sort? I know when we get stomach aches or symptoms, we quickly think gluten. Sometimes we get viruses or bugs like everyone else. Just a thought. Ask your ped for zofran to keep for days like this!

[nvsmom]

If it is gluten, it seems to affect people within the hour or within a day or two. I would guess, based on what I have heard from others, that the norm is within the first 6 hours or so.

 

I hope he better soon.

[palooka]

Maybe he has a stomach bug of some sort? I know when we get stomach aches or symptoms, we quickly think gluten. Sometimes we get viruses or bugs like everyone else. Just a thought. Ask your ped for zofran to keep for days like this!

 

None of the other kids from the party were or are sick, and this is something that happens to him about every 4-5 weeks. It's exactly the same every time, except for the amount of time before he gets sick. Every 4-5 weeks we eat out somewhere, I think I've been careful, but I wasn't totally vigilant. Then between 3 and 12 hours later he vomits for 5 hours straight. After 5 hours he's back to himself like nothing happened.

[cyclinglady]

Until he reaches his normal weight, I would avoid going out to eat. It will speed up healing. Every glutening causes a set back. He may not continue to vomit, but celiac disease is an autoimmune disorder that can take weeks to calm down. He might be getting damage and you can not even tell (for example, bone damage). Each glutening may trigger an another autoimmune disorder like thyroiditis or type 1 diabetes. It is important to avoid gluten. Getting glutened every 4 to 5 weeks is not acceptable (based on your comments).

The learning curve is hard for the whole family, but he is just three. You must be a vigilant advocate for him. I am sorry that I sound tough, but we are talking about a little kid here!

I open he feels better soon.

[palooka]

Maybe he has a stomach bug of some sort? I know when we get stomach aches or symptoms, we quickly think gluten. Sometimes we get viruses or bugs like everyone else. Just a thought. Ask your ped for zofran to keep for days like this!

Sorry I didn't see the last part of that. I should ask about Zofran, thanks!

 

If it is gluten, it seems to affect people within the hour or within a day or two. I would guess, based on what I have heard from others, that the norm is within the first 6 hours or so.

 

I hope he better soon.

Okay, that makes me a bit more certain then. It's never immediately after eating the (possible) offending food, but also never more than 14 hours later that he gets sick. Usually the time between there he's sleeping or not eating anything else.

 

Until he reaches his normal weight, I would avoid going out to eat. It will speed up healing. Every glutening causes a set back. He may not continue to vomit, but celiac disease is an autoimmune disorder that can take weeks to calm down. He might be getting damage and you can not even tell (for example, bone damage). Each glutening may trigger an another autoimmune disorder like thyroiditis or type 1 diabetes. It is important to avoid gluten. Getting glutened every 4 to 5 weeks is not acceptable (based on your comments).

The learning curve is hard for the whole family, but he is just three. You must be a vigilant advocate for him. I am sorry that I sound tough, but we are talking about a little kid here!

I open he feels better soon.

The thing is he is a toddler and things happen. I'm not making excuses but I am very careful with him. The time before this when he got sick his nanny took him out with other kids and she swears up and down he had nothing but eggs and fruit (she is careful too). But he got sick, so now she doesn't take him out at all. The time before that we were visiting my family in another state and I told him and my parents he wasn't allowed to eat anything from their house. But my mom is a very poor housekeeper and I wouldn't be surprised if there were cracker and cookie crumbs on basically everything. The time before that it was at a BBQ place where, again, they swore what I ordered was 100% gluten-free and supposedly the chef had a celiac wife. He got sick that night, we never went there again.

 

Some places we go out and never have a single issue. Chipotle, for example, has not once made him sick. Same thing with The Cheesecake Factory (we order gluten-free pasta). I know it sounds crazy but we've eaten there many times and he's never had a problem, never had bloating or bad poops after, nada.

 

As for yesterday, I brought food for him but my cousin went out of her way to buy special gluten-free pretzels just for him, which was really sweet. So I told him that the pretzel sticks were fine. I had no clue she bought almost identical non-gluten-free pretzels and had set out.

 

Here are the reasons I think he still gets sick frequently... 

1) he is a toddler and he is going to touch things when I'm not looking. He's excellent about asking before eating stuff, but he is still a kid who might touch a crumb-covered surface then touch his mouth. I cannot ban gluten from other peoples' homes. I want to, but I can't. 

2) Every time we go out I bring special food just for him, but if I ask and the chef swears it's safe and he seems knowledgeable then I say okay. Maybe I should just refuse to let him eat anything I haven't prepared myself? Not being sarcastic, I'm asking seriously.

3) Most people simply don't believe me when I tell them he will get sick. Yesterday an aunt kept nagging me, "here kiddo, have some chicken!" No! That's got breading on it. "Oh, well can't you just wipe it off?" No, he will get sick. "Oh, well what if you washed it?" No, he will get sick. "What if you cut around it then washed the inside part?" OMG just go away!

4) He doesn't actually have a celiac diagnosis. The only time I *know* he had gluten and then he got violently ill was that one time at 19 months. Every other time he's been sick I'm just guessing it's gluten. I didn't see him eat the wrong pretzel yesterday, I'm just guessing. And other random times he doesn't get sick when I know he was exposed. Once I was feeding him and I mixed up spoons and gave him a whole bite of my wheat-germ-covered item. I about died. But he didn't get sick at all. So that's partly why I came on here asking if getting sick 12 hours post exposure is common. I'm just perplexed. We'll go a month doing the same routine and he's perfectly fine, then one night he wakes up just puking his guts out. No fever, no diarrhea, the course is always the same. And all I can do is speculate about crumbs or identical pretzel sticks.

 

Some people have suggested he might have cyclic vomiting syndrome. I just don't know.

[cyclinglady]

Wow, I am sorry that you are struggling with this! I do not really have the answers that you need. Let's hope that some of the other parents will chime in later and offer advice.

You are right that toddlers put everything into their mouths. One of our members is a doctor and she kept getting glutened by her small children until she banned all gluten from her home and stepped up safe gluten practices at her children's daycare. It is hard! Washing hand is critical and keeping a gluten-free house maybe necessary for now. Gluten is not allowed in my house. My husband and I need a safe place and my kid gets her gluten fix at school, but she washes her hands immediately when she gets home.

We rarely eat out. But we choose restaurants that have safe gluten practices in place and I still talk to the manager each and every time. Drives my family nuts, but I worked in food serve once and not everyone cares or follows procedures. It is risky to eat out so I have learned to plan for all meals and have back up meals at the ready when I am too tired to cook.

You have to stand your ground regarding relatives. My own mom asked me what would happen if she gave my baby some ice cream (I have a milk allergy and wanted to delay milk, nuts, eggs, and gluten until she was at least a year old with my doctor's blessing not knowing that this strategy is not effective....but that was a decade ago). I told her that she would not be caring my my child ever again, if she did not follow my rules. Mom complied because I was serious and would follow through. My FIL has sleep apnea and he is never allowed ever to drive my kid. Hurt feelings. Sorry, he refuses treatment, but I am not going to be nice and let him drive my kid anywhere. Another relative is a hoarder and we never visit. Sad, but their home is not safe for small kids.

A diagnosis is nice to have. My husband went gluten free per the bad advice of his GP and my allergist. Once he was off gluten he felt great. He could never go back on just to get a diagnosis. He says it is not worth it for him. But he would be the first to tell you that I get a lot more support because I got an official diagnosis.

Celiac Disease is a strange disorder. It can manifest in so many ways. I have a symptoms that have come and go over the years. Glutening symptoms are never consistent.

Perhaps it is just an allergy to wheat for your son. If the body is fighting off other allergens and then gets a bit of wheat, maybe it sends your son over the edge and he gets sick. Who knows?

Perhaps it is time to track down a good GI doctor who specializes in Celiac Disease.

Take care!

[palooka]

Wow, I am sorry that you are struggling with this! I do not really have the answers that you need. Let's hope that some of the other parents will chime in later and offer advice.

You are right that toddlers put everything into their mouths. One of our members is a doctor and she kept getting glutened by her small children until she banned all gluten from her home and stepped up safe gluten practices at her children's daycare. It is hard! Washing hand is critical and keeping a gluten-free house maybe necessary for now. Gluten is not allowed in my house. My husband and I need a safe place and my kid gets her gluten fix at school, but she washes her hands immediately when she gets home.

We rarely eat out. But we choose restaurants that have safe gluten practices in place and I still talk to the manager each and every time. Drives my family nuts, but I worked in food serve once and not everyone cares or follows procedures. It is risky to eat out so I have learned to plan for all meals and have back up meals at the ready when I am too tired to cook.

You have to stand your ground regarding relatives. My own mom asked me what would happen if she gave my baby some ice cream (I have a milk allergy and wanted to delay milk, nuts, eggs, and gluten until she was at least a year old with my doctor's blessing not knowing that this strategy is not effective....but that was a decade ago). I told her that she would not be caring my my child ever again, if she did not follow my rules. Mom complied because I was serious and would follow through. My FIL has sleep apnea and he is never allowed ever to drive my kid. Hurt feelings. Sorry, he refuses treatment, but I am not going to be nice and let him drive my kid anywhere. Another relative is a hoarder and we never visit. Sad, but their home is not safe for small kids.

A diagnosis is nice to have. My husband went gluten free per the bad advice of his GP and my allergist. Once he was off gluten he felt great. He could never go back on just to get a diagnosis. He says it is not worth it for him. But he would be the first to tell you that I get a lot more support because I got an official diagnosis.

Celiac Disease is a strange disorder. It can manifest in so many ways. I have a symptoms that have come and go over the years. Glutening symptoms are never consistent.

Perhaps it is just an allergy to wheat for your son. If the body is fighting off other allergens and then gets a bit of wheat, maybe it sends your son over the edge and he gets sick. Who knows?

Perhaps it is time to track down a good GI doctor who specializes in Celiac Disease.

Take care!

Thanks. You sound knowledgeable and honestly you can still help me I bet... does it sound like celiac? Is it worth having him scoped? Doing a gluten challenge? 

 

And I guess I need to vent too. 

He has never been "glutened" in our home. We do have gluten products, but we are all very careful to never cross-contaminate with his food. He has his own pantry shelves, we make either all gluten-free meals or give him his own separate meal. And he's only ever thrown up after being somewhere else (family, restaurant) where I thought I had done my diligence but obviously not. I have cried so much for him. Every time he's sick I hold him and just weep apologies into his hair. Really... they had gluten-free pretzels, I sat with him almost all the time he was eating, but there were 3 other kids there and my 5 month old, and about a dozen adult family members walking around. He had such a great time with family and he tries so hard to listen and be good. Last week we were at a 3 yo's birthday party and I made his plate myself, then when his dad walked by their table another kid had put pasta on his plate! His dad immediately pointed and asked if he ate it and he said, "No, I didn't. Mama said it will make you sick." Today when he was throwing up he told me, "My tummy has gone away. Maybe it went grocery shopping to find food that won't make Shay throw up."

 

Besides the vomiting, we try so, SO hard to help this kid gain weight. We give him whipping cream with chocolate in a sippy cup. When I make him eggs in the morning it's with huge hunks of butter and lots of cream. I add olive oil to everything. I used to tell myself I just had skinny kids, but now we have a daughter and at 3 months she weighed more than my son did at 1 year. At 5 months she's now wearing diapers that fit him at 2 years (we use cloth so this is literally the same diaper). And she's perfectly average height and weight. 

 

Okay. Vent over. I'm calling the ped GI on Monday. I'm terrified to have him put under but I guess we will if that's the only way. Thanks for listening. 

[nvsmom]

(hugs)  It is tough to keep them gluten-free.  If possible, it does sound like a good idea to bring all of his food with you when he goes out. It will be a hassle, and some people mighte even be offended, but it is his health you are watching out for.

 

I have three boys who I keep gluten-free and I provide them with all of their food when we are out and about except for the occasional treat like a soda pop or an ice cream (from a newly opened container).  If we go to gatherings I tend to bring more food than any other guest would because I want my kids to have food options and be safe - plus they are all school aged now and at that age where they want what everyone else has.  Even in (fast food) restaurants, we'll order a drink and I whip out my cooler of food; we haven't been to a real restaurant in a couple of years now. It is a hassle, but my kids have not been made sick when we go out so I know it works for us.

 

For putting on weight. perhaps try upping his carbs and staches?  Generally things that convert to sugars in the blood (like rice, potatoes and bread as well as the sugars like juice, jam, and gluten-free cereal) are much more likely to add weight onto someone than fats will... This isn't true of everyone but of most people.  I myself lose weight as soon as I up my fats and lower my carbs/sugars.

 

Best wishes and good luck with the GI.  If you end up testing for celiac disease, be aware that he'll need to consume about one slice of bread per day for 2-3 months (for blood tests) or for 2-4 weeks if the endoscopic biopsy is being done.... Its a hard route to go. Hopefully they'll come up with a better way to test soon.

[palooka]

[snip]

If you end up testing for celiac disease, be aware that he'll need to consume about one slice of bread per day for 2-3 months (for blood tests) or for 2-4 weeks if the endoscopic biopsy is being done.... Its a hard route to go. Hopefully they'll come up with a better way to test soon.

 

 

Okay, hypothetically, let's say the GI wants to biopsy and we have to feed him bread. The last time I knowingly gave him bread he ended up in the pediatric ER. Is it worth it? I can't put him through vomiting on purpose. He doesn't deserve that.

[cyclinglady]

Consult with the GI. Talk to him or her about the value of celiac disease testing. I can not tell you if it is worth feeding bread to your son. That is a decision you can only make with your husband after some doctor consults. Consider asking about the genetic test. See if he has the genes for celiac disease. Over 30% of the population carries the celiac gene, but it is a start. Normally this test just rules out celiac disease after antibody testing or biopsy is negative. Eating gluten is not required. Ask the GI to do blood work to check for anemia and vitamin deficiencies. Tell him/her your story and bring in all supporting lab work, chart, etc. Put together a family history. Celiac disease may not be on the family chart but other autoimmune disorders might and several are strongly linked to celiac. Research, research, research!

How little is little? Is your son normal in head size or height? My kid was always in the 5% bracket in weight, but 50% on head and height. She remained little until she was five. Now at 13 she is at 50% in weight. My youngest niece towers over her petite sister who is a year older. The oldest gets hand-me-downs from her younger sister. Some families have little people -- not everyone is malnourished. My Ped used to harass me into feeding my kid more. That I should give up breastfeeding and supplement. But I refused. Little people run in my family. I am little. Later, our Ped confessed that our daughter had the thinnest chart indicating good health! Duh!

Do not compare siblings. They are different. It could be a red flag or maybe not.

I feel your frustration! Get to a GI and start a discussion.

Oh, by the way, someone else just might have celiac disease, could it be you? Go to the University of Chicago's celiac website to check on testing and the list of 300 symptoms. You could get a diagnosis for your son, without a challenge, based on a diagnosis of other family members.

[nvsmom]

Okay, hypothetically, let's say the GI wants to biopsy and we have to feed him bread. The last time I knowingly gave him bread he ended up in the pediatric ER. Is it worth it? I can't put him through vomiting on purpose. He doesn't deserve that.

It might not be worth it.  From what I have heard, an "official" diagnosis is often helpful to get accommodations made in school but you can work around that if you need too.  It might be different up here in Alberta, Canada, but I have three kids who are gluten-free, without an official celiac disease diagnosis, and so far I have managed to keep them safe (as far as I know).

 

You could also push for a diagnosis of non-celiac gluten sensistivity (NCGS) and then add you suspect celiac disease.  A person with NCGS needs to stay gluten-free just as much as a celiac.  Best wishes.

[palooka]

Update: 

 

Guess I'm leaving this forum as quickly as I joined it. We took our son to the ER during his most recent vomiting episode and they drew labs while he was ill. We've now been referred to a geneticist. It appears he experiences episodic lactic acidosis and ketoacidosis (they have conclusively ruled out diabetes), and we're just keeping our fingers crossed it's not a mitochondrial condition. 

 

Thanks for the advice everyone.

[cyclinglady]

Thanks for keeping us posted and I hope everything goes well!

[StephanieL]

You and your kiddo are in my thoughts.  I hope you figure things out very soon.

[nvsmom]

Best wishes!