4 Year Old With Reflux And Constipation

[Mylesmommy]

I am still not sure a year later if I am barking up the right tree - but here it goes!

I have a now 3 year old that was having diarrhea constantly about a year ago. Was also not growing (percentiles dropped significantly in height) and was waking up all night long. Blood work was normal, endoscopy was negative. Even the genetics came back negative. That being said, we are completely thriving on a gluten free diet as directed by his PMD and GI doctor. Height is back up, sleeping at night, no diarrhea.  When he does get gluten accidently - it is not pretty.

 

When I had the genetics testing done on my son, we had the celiac panel and genetics done on his sister as well. Again, all of her stuff was negative. We let her have gluten at school, so have not cut that out. She runs constipated, will stool every day but they are like pellets. She also seems to be having reflux. She will say things like "I just threw up, but don't worry, I swallowed it" (gross, I know).  I have noticed that she has only gained 2 pounds in almost a year (and she usually runs in the higher percentiles).  I have kind of been ignoring it, unitl I noticed that she hadn't gained very much weight. I wrote an email to my sons GI doctor, but she is out of town unitl next week. The reflux seems to be getting worse.

 

I am wondering a few things.

First, is the genetics testing the end all be all. Like if that is negative, does that without a doubt mean they don't have it. My pediatrician made me feel like he still thinks my son has celiac. The GI doctor kind of gave me the impression that he will hopefully gown out of it, and that it is not celiac.

 

Should I try going gluten free with my daughter? I am wondering if I should and see what happens. Or if I should have her officially seen by the GI doctor and not just unofficially emailed.

 

Lastly, does it seem like a long road for diagnosis for many kids? I feel like I hear a lot of stories where it takes a loooooooong time to get answers. So frustrating.

Thanks for the support.

 

[nvsmom]

Your kids have had some bad luck.   Poor guys.

 

I am wondering a few things.

First, is the genetics testing the end all be all. Like if that is negative, does that without a doubt mean they don't have it. My pediatrician made me feel like he still thinks my son has celiac. The GI doctor kind of gave me the impression that he will hopefully gown out of it, and that it is not celiac.

 

Should I try going gluten free with my daughter? I am wondering if I should and see what happens. Or if I should have her officially seen by the GI doctor and not just unofficially emailed.

 

Lastly, does it seem like a long road for diagnosis for many kids? I feel like I hear a lot of stories where it takes a loooooooong time to get answers. So frustrating.

Thanks for the support.

 

The genetic test is not the end all be all BUT it is usually correct.  I believe it is 97% of celiacs have the DQ 2 and DQ8 genes, but 3% of celiacs do not.  It is possible to get celiac disease without those genetics, it is just unlikely  There is someone around here (I think it was Ravenwoodglass) who had a negative genetic test yet a positive celiac disease test, so it definitely is not unheard of.

 

Those genetic tests have nothing to do with NCGS (non-celiac gluten sensitivity) though.  Those with NCGS have the same symptoms as a celiac but will have negative tests.

 

I think you should try the gluten-free diet with your daughter in the end but you might want to start the ball rolling with a GI first, even if it is just to see how long it would take.  It sounds like your daughter has a few problems so seeing if the gluten-free diet help is a good idea.  It can't hurt.  

 

And yes, diagnosing celiac disease is long and often barbaric (since you only test positive if you make yourself sick enough).  I personally was forced to skip the process with my kids, but I've never regretted making them gluten-free.

 

Best wishes.

[FoggedIn]

I am still not sure a year later if I am barking up the right tree - but here it goes!

I have a now 3 year old that was having diarrhea constantly about a year ago. Was also not growing (percentiles dropped significantly in height) and was waking up all night long. Blood work was normal, endoscopy was negative. Even the genetics came back negative. That being said, we are completely thriving on a gluten free diet as directed by his PMD and GI doctor. Height is back up, sleeping at night, no diarrhea.  When he does get gluten accidently - it is not pretty.

 

When I had the genetics testing done on my son, we had the celiac panel and genetics done on his sister as well. Again, all of her stuff was negative. We let her have gluten at school, so have not cut that out. She runs constipated, will stool every day but they are like pellets. She also seems to be having reflux. She will say things like "I just threw up, but don't worry, I swallowed it" (gross, I know).  I have noticed that she has only gained 2 pounds in almost a year (and she usually runs in the higher percentiles).  I have kind of been ignoring it, unitl I noticed that she hadn't gained very much weight. I wrote an email to my sons GI doctor, but she is out of town unitl next week. The reflux seems to be getting worse.

 

I am wondering a few things.

First, is the genetics testing the end all be all. Like if that is negative, does that without a doubt mean they don't have it. My pediatrician made me feel like he still thinks my son has celiac. The GI doctor kind of gave me the impression that he will hopefully gown out of it, and that it is not celiac.

 

Should I try going gluten free with my daughter? I am wondering if I should and see what happens. Or if I should have her officially seen by the GI doctor and not just unofficially emailed.

 

Lastly, does it seem like a long road for diagnosis for many kids? I feel like I hear a lot of stories where it takes a loooooooong time to get answers. So frustrating.

Thanks for the support.

 

I would add something for consideration as you decide how to go forward.  I have gluten sensitivity, but I don't actually know if it is Celiac or Non-Celiac Gluten Sensitivity (NCGS) because I did not go through a proper diagnostic process.  I am really thankful to have had somewhat of a diagnostic process--positive blood work and the recommendation from my Naturopath to adopt a strict gluten free diet--because none of the doctors I have seen over the years picked up on the fact that gluten was causing my symptoms.  For me, for right now, not knowing is okay because I am in control of what I consume.  But as a parent of a child with other special needs, I will say having a diagnosis helps tons when it comes to keeping my child safe when he is away from me at school, camp, Sunday school, or just Grandma and Grandpa's.  It helps people to understand the gravity of following instructions to keep him safe.  I'm sorry I can't add to whether I think your daughter has Celiac or a gluten sensitivity of another kind, because we are still new to all this in my family for myself and as we look into it for one (or more) of my sons, but just thought I would add my voice on the advantages of a physician's diagnosis if it can be determined.  Good luck with whatever you decide to do for your daughter.  I hope you can get it worked out for her.

[Mylesmommy]

Its really hard not having any sort of "real" diagnosis. I keep telling myself for my son, the only thing that matters is that he needs to be gluten free for now. It makes such a huge difference. However, when you say gluten intolerance, people kind of don't take it as seriously. (to which I want to give him gluten and have him live at their house for a few days to deal with the aftermath!).

 

Part of me wishes we did not get the genetics testing done. I had them tested because they made it seem like if the test was negative, it was a definite negative for celiac. Now, there seems to be more ambiguity in that. The fact that my pediatrician said he didn't care what the genetics test said, he still thinks my son has it - that makes me a little crazy. I guess I just want a black and white answer, but there is lots and lots of grey!

[mommida]

I would suggest going to the ped. g.i.  Those symptoms are common for a list of disorders.  Don't change the diet yet, because at least one of the conditions (Eosinophilic Esophagitus) could be "triggered" by gluten.

 

short list...  H. Ployri., a congenital defect, parasites, a hernia can even cause vomitting, and sorry I can't remember all the things.

 

I went through this with my daughter.  She had been diagnosed with "probable" Celiac when she was 17 months old, and then Eosinophilic Esophagitus when she was 6 years old.

 

My daughter's pediatric case of EE/(EoE) symptoms

it seemed the same as gluten reaction for Celiac

restless sleep (later determined by damage to the esophagus and severe GERD-like symptoms made worse by lying down or abdominal exercise)

vomitting small amounts into her mouth that she would swallow back down - at the worst of it probably more than 5 times a day

if I asked her where it hurt she would circle her entire STOMACH, not even mentioning her throat

every trip to the doctor they would tell me she was horribly constipated, even with having daily B.M.'s

dark circles under her eyes

headaches

and she even reached up and pulled a clump of her hair out.  just matter of fact like to show me that "it just falls out"

bad breath

swollen tonsils (with blood vessels engorged and cream colored spots)

she would cough up some very small chunks that looked like pale soggy corn fakes (ped gi determined these bits were undigested food that was caught in the damage grooves of her esophagus)

 

Now that being said.. there was a proven connection between Celiac and EE.  Recently an article was released saying the opposite.  I still believe they are connected.