Urgent Need Regarding A Toddler

[sweetness34]

HI, thank you all inadvance. I have a 19month old son who has been vomitting almost everyday for 4 months. I would say that primalrily it happens in his sleep but he definitely will just stop what he is doing at times, throw up, and resume playing. My nephew has Celiacs and my son was tested and it came back negative. We then went down the GI route and did full work up including endoscopies and allergies and all came back negative. They did MRI's including the brain and found something called a Chiari Malformation. Essentially not enough space around the brain stem. We were told that this was causing pressure to build up and a response was to vomit. They said it happened more at night because all humans have highest brain pressure during REM. We were told to expect some symptoms to continue after the surgery but they would quickly go away. The surgery was on Feb 20, 2009 and he is still vomitting, mainly in his sleep. They want to do another MRI of his brain but also put him in a sleep study to see what is happenning while at rest.

I cant help but think this may go back to Celiac's after reading many postings. My question is what specifically should I demand be looked at again? If blood test came back negative should I have them repeat it or is there a more thorough test to demand. He also has Exima, it looks more like a rash with dry skin as opposed to some of the drema pictures I saw on this site. Those had bumps and were itchy, he doesn't seem to have that.

Any suggestions to pose to doctors would help!!

[ChemistMama]

It wouldn't hurt to have him tested again, as long as he's on gluten. My son tested positive for celiac at 18 months and his only symptom was vomiting (no stool problems). If he tests negative again, I would have him tested for food allergies. If you're convinced, you can try a gluten-free diet and see if it works...it's hard and will take a few months to see results, but it may work. GOod luck!

[bear6954]

My son was diagnosed at 2 yrs old. He also would throw up in his sleep - just sit up, throw up and go back to sleep. Just recently, he would be playing, throw up a little, and go on like nothing happened. My son has acid reflux and once the doctor put him on prevacid (about 3 weeks ago), no more juicy burps, throwing up in bed or throwing up when playing. Has you son been check for acid reflux? I tried to keep my son quite after he ate, but my son goes 90 miles an hours. It got embarressing when he would do it at playgroup. Hope that helps.

My sons blood tests were negative on two different occassions. He had a very positive biopsy. Blood work is not always accurate in small children.

Have you had a DNA test done or does celiacs run in your family?

[celiac-mommy]

I just happened to see a medical mystery program in which a child was having the same symptoms as yours. They couldn't figure out what was going on for the longest time, but since it was happening nightly, they finally found a neurologist who suggested a sleep study. They discovered the child was having seizures that manifested as vomiting. Once on the right meds for the epilepsy, the vomitting stopped. Just another idea...

[weluvgators]

I just happened to see a medical mystery program in which a child was having the same symptoms as yours. They couldn't figure out what was going on for the longest time, but since it was happening nightly, they finally found a neurologist who suggested a sleep study. They discovered the child was having seizures that manifested as vomiting. Once on the right meds for the epilepsy, the vomitting stopped. Just another idea...

I do wonder if they tried a gluten free diet. If gluten were causing the seizures, how would they ever know without trying a gluten free diet? Is there a way to diagnose gluten induced seizures?

[celiac-mommy]

I do wonder if they tried a gluten free diet. If gluten were causing the seizures, how would they ever know without trying a gluten free diet? Is there a way to diagnose gluten induced seizures?

in this case I believe they were epileptic grand mal (sp?) seizures. I'm pretty sure Celiac had nothing to do with it.

[weluvgators]

in this case I believe they were epileptic grand mal (sp?) seizures. I'm pretty sure Celiac had nothing to do with it.

I think it is important for people to recognize that there is a lot of medical information out there to indicate that epilepsy and gluten intolerance may be related in some instances. Let's not dismiss the neurological implications that gluten exposure may have for some.

https://www.celiac.com/articles/116/1/Epile...ease/Page1.html

I think this sentence from the article above is critical:

[gfb1]

Here is a sampling of links from a PubMed search of

[mommida]

I saw the Mystery Diagnoses episode too. Read the studies that link gluten to seizures, not neccesarily Celiac Disease just a gluten intolerance. Add to that the fact that testing for Celiac is still not very accurate for patients under 24 months and this child is 19 months old.

My advice, check with GIG, Gluten Intolerance Group for a refferal for a Pediatric Gastroentrologist.

[weluvgators]

celiac does NOT cause epilepsy/autism/etc. that does not suggest/imply, however, that celiac disease MIGHT create a trigger in a very small percentage of individuals -- IF (really big 'if') case studies and anecdotes regarding the relationship are so. epihenomenon, at best.

I don't think that the writings indicate that celiac does cause those things either. But I do think that much writing exists to indicate should you experience these symptoms, consider that gluten may be a trigger. And how does one know if gluten is a trigger in the equation? Why do people seem so averse to letting others experience a gluten free life? Why are family and friends so averse to experiencing a gluten free life for themselves? I don't really get it!

What do you think of this study?

"Increased evidence of epilepsy in coeliac disease":

Open Original Shared Link

It was a source cited in the "Neurological complications of coeliac disease" article, full text here: Open Original Shared Link. The thing that pulls at my heart here though is summed up best in this article on page 396: "It might be that there is a therapeutic window of opportunity in which commencement of a GFD is helpful."

I am not experienced in reviewing medical journal articles and enjoy learning more about the information that is available to us. But there is just so much to read and process!

[gfb1]

again; in the 1st article, written in 1978, Nine (9) out of 165 celiac patients were considered to have epilepsy, whereas there were none in a matched control group

this is quite different from the previously mentioned (2007) paper -- where idiopathic epileptics were screened for celiac.

the 2002 review article adds some data; however, the statistical analysis is incorrect. the majority of the patients reviewed come from a 'retrospective' review of hospital records. this is not a random sampling; and the statistical criteria for significance is much more stringent than the author's suggest.

i might also point out that patients with neurological symptoms are much more likely to be diagnosed -- since the symptomology is considered to be 'more severe' than <i>just</i> gastrointestinal distress. (btw -- i do not, in any way, consider the gastrointestinal distress to be minor .. but, its not a biggie which gets patients to specialists in a timely fashion.)

there is no doubt in my mind that there is a high prevalence of depression among celiacs. but, that is also true of anyone who is subjected to years of incorrect diagnoses and ham-handed or cruel bedside manner (for example, the everpopular and all too frequent, wink-wink, "its all in your head isn't it?").

i stand by my last statement;

... that does not suggest/imply, however, that celiac disease MIGHT create a trigger in a very small percentage of individuals -- IF (really big 'if') case studies and anecdotes regarding the relationship are so. epihenomenon, at best.

however, given the actual data contained in the papers -- it is no more or less likely than chance

.

note: i am absolutely NOT averse to "letting others experience a gluten-free life". quite the opposite. another group of folks that i worry about are those that are so driven for external confirmation (usually from a medical authority) that they return to a gluten-containing diet for months (along with all the resultant celiac-symptomology, some of which is excruciating) just to have some doc say, 'ok' those tests were positive/high/equivocal. if memory serves, i think ravenwoodglass said, "if you feel better being gluten free, what is your problem?" or something like that (rwg is much nicer than me...)

[sugarsue]

I was not able to keep up with all the posts about epilepsy and gluten, but I felt the need to add a few comments in case they are helpful somehow. My dd (6) is diagnosed with epilepsy. She has those staring seizures where she will stop what she is doing and is not conscious for 5-10 seconds. She does not convulse but she might walk off or try to climb something, there are very specific movements that she has (had). She's been seizure free for 1 year due to finally finding the right seizure medicine. Her new neurologist though is very interested in her gluten intolerance diagnosis and possible (but unknown) celiac status. We were suposed to go back in March for our second appointment but we had the flu and had to reschedule for the end of May. At any rate, her neurologist believes that her seizures may actually be caused by her gluten problem. I hav e no idea what our next steps are though since she is seizure free, do we mess with the meds to see if gluten is working or do we keep her on the meds to keep the seizures away???

Anyway to the orig poster, I am sorry you are going through this and I hope you find some answers. Hang in there and hugs to you!

[nasalady]

HI, thank you all in advance. I have a 19month old son who has been vomitting almost everyday for 4 months. I would say that primalrily it happens in his sleep but he definitely will just stop what he is doing at times, throw up, and resume playing. My nephew has Celiacs and my son was tested and it came back negative. We then went down the GI route and did full work up including endoscopies and allergies and all came back negative. They did MRI's including the brain and found something called a Chiari Malformation. Essentially not enough space around the brain stem. We were told that this was causing pressure to build up and a response was to vomit. They said it happened more at night because all humans have highest brain pressure during REM. We were told to expect some symptoms to continue after the surgery but they would quickly go away. The surgery was on Feb 20, 2009 and he is still vomitting, mainly in his sleep. They want to do another MRI of his brain but also put him in a sleep study to see what is happenning while at rest.

I cant help but think this may go back to Celiac's after reading many postings. My question is what specifically should I demand be looked at again? If blood test came back negative should I have them repeat it or is there a more thorough test to demand. He also has Exima, it looks more like a rash with dry skin as opposed to some of the drema pictures I saw on this site. Those had bumps and were itchy, he doesn't seem to have that.

Any suggestions to pose to doctors would help!!

So sorry your little one is going through this! (((Hugs)))

You definitely have the right to ask to have him tested again or to have more thorough testing. Absolutely!! Celiac tests are notorious for giving false negatives, especially in young children. My granddaughter Carly is an excellent example of this, as her bloodwork and first biopsy were both negative, even though she was the classic "celiac baby"....skin and bones with a distended belly, severe GERD, etc. Her second biopsy was positive, and she is now gaining weight and thriving on the gluten free diet.

I've read the various posts regarding the vomiting/seizures and the connection or lack thereof to celiac. What I'd like to point out to all and sundry is:

Hello there! The kid might have BOTH epilepsy/seizures caused by a brain malformation AND have celiac disease!! After all, there is celiac disease in his family!

My granddaughter/adopted daughter, Emma, 2 1/2 years old, has multiple serious medical issues, including TAR Syndrome, rhombencephaphalosynapsis, cerebello-trigeminal-dermal dysplasia, cerebral palsy, Failure to Thrive, GERD.....well, you get the idea. In our family we are familiar with the consequences of brain malformations. Please visit Open Original Shared Link if you'd like to meet Emma....she's a sweetheart.

We put Emma on the gluten free diet after finding out that she has both the HLA DQ2 gene AND a family history of celiac disease on both sides of the family. Her eczema cleared up completely within 3 weeks, and she's definitely sleeping better now....which I believe is an indication that her GERD has calmed down a bit.

You *don't* have to have a diagnosis to put your child on the gluten free diet; if his symptoms improve, then you know that he needs to avoid gluten. If you really feel the need to have a diagnosis, you MUST keep him on gluten, in fact he needs to eat a lot of gluten to make sure the tests are accurate. But if he does well without gluten, I think you have your answer.

Please be aware that you may see his eczema clear up on the gluten-free diet, but the vomiting might continue. Of course, this could indicate that the eczema is related to celiac/gluten intolerance while the vomiting is not.

My feeling would be that ANY improvement is a good thing!

Take care.....the best of luck to you and your little guy!!

JoAnn