16 Month Old With Probable Celiac Disease

[AGsMom]

My 16 month old daughter went in to the pediatrician 2 months ago with an unrelated cough.  He saw that she was off of her growth curve - hadn't gained an ounce since her 12 month well-child.  We mentioned she'd had diarrhea for a few days and I was concerned she might have a food allergy, as her bottom was really red.  He suspected celiac disease, so he ran a panel.  In the meantime, we went gluten free.

 

Diarrhea cleared up.  We were told she has a mutated gene that indicates celiac disease.  Other tests were negative, but could have been negated by low IgA counts.  (I hope I'm recounting all of this correctly)

 

Anyway, we are going to the pediatric gastro next week to - I assume - work on a definitive diagnosis.  In the meantime, we are assuming we are dealing with celiac disease and have been gluten-free for 2 months now.  Well, for the most part!  There's been quite a learning curve.  We didn't realize how much of a big deal cross contamination could be and we weren't being as attentive as we should have been in the beginning.  

 

I think we're doing a pretty good job now.  The problem is that she's only 16 mo. and she can't tell us when she gets sick or understand what she should stay away from.  So, we're still dealing with diarrhea and diaper rash.  I say "rash", but it's really more than that.  Her bottom will be fine, then she'll have a really bad poop and it will be immediately bright red, she will cry, it's leaving her in a lot of pain. 

 

Has anyone else had this experience?  Are we still just healing?  Or should I be looking for even more hidden gluten?  I swear, I've combed these boards and others to learn how to do this and I think I'm being as vigilant as possible, but I guess there could still be something I'm missing.

 

 

[cyclinglady]

I'm so sorry to hear about your baby!  My heart goes out to her! 

 

I don't have any personal experience (my daughter's 12 and does not have a gluten issue yet…), but besides the possibility of having Celiac Disease, your daughter  should be checked for food allergies.  Normally, no one is taken off gluten until all testing is done.  Not sure why your doctor recommended going off gluten without waiting for the gastro's input.  Gene measurement only tells you that there is a potential -- it does not give a diagnosis.  

 

I can tell you that my daughter was always in the 5 to 10 percent range of the growth chart in terms of weight.  Head and body length did grow.  My ped was always concerned, but we are a family of little people.  She didn't hit 20 pounds until she was two years old.  She's taller than me now and in the 50% range for weight.  

 

Let's hope a few parents with infants can shed some light.

 

Take care. 

[mommida]

My daughter was diagnosed as "probable" Celiac at 16 months old.  Problem right now, she needs to be eating gluten for the damage to show up during an endoscopy with biopsy.  My daughter was too sick to have the endoscopy done.  She had a positive celiac panel and 2 Celiac genes.

 

This is the rest of the story....

 

When my daughter turned 6 all of the "glutening" symptoms returned, but much worse.  I was making myself crazy trying to find "hidden" gluten or cross contamination.  So she finally had the endoscopy with biopsy done.  She was diagnosed with Eosinophilic Esophagitis when she was 6. About 2 years ago the medical community has proven a link between Celiac and EE. Now this is definitely a reason to suggest you do have the full testing ~ including the endoscopy with biopsy.  Pediatric patients present with these symptoms for a lot of different disorders and can not verbally tell you what is going on.  My daughter at 6 describing EE pain, never complained about her throat or esophagus area, she just described belly pain consistant with Celiac.

[africanqueen99]

My daughter started showing signs at 12 months, but wasn't DX until 18 months.  She had the same "rash" whenever she pooped.  I just shrugged it off, but was clear as a bell that there was an issue.  Literally the moment she pooped she would scream bloody murder and her poor bottom would be raw and often have little tears with blood (not from solid stool, but from the feces burning her skin).

 

Without the language she was able to tell us when she got glutened - bloody murder screaming, not sleeping at night, etc.  They make it known.

 

I know it seems far off now, but she's going to need a formal DX for school.  Yes, it will suck to put her back on gluten, but I'd really suggest doing it now, doing it hard core and pushing forward with the doctors.  Once she has been DX then you take her off it for good.

 

Dealing with CC can be a challenge, but start a new thread with that topic and all of us with small kids can help you through it.  Little ones have a difficult time with CC since adults don't see pretzels on the playground and eat them - babies surely do!

[AGsMom]

Thank you all.  We are going to Ped Gastro tomorrow, so we'll see what he/she says.  We have been off of the gluten for over 2 mo.  When I called the office, they said go ahead and keep her off until after the appointment.  I'm gathering from your input that I may end up having to put her back on it to do the endoscopy.  I so dread that.  I hate to do it to her - the diet and the scope, but I do understand your point about needing a formal DX.

 

I have never heard of EE.  Thanks for bringing that up.  I'm going to put it on my list of questions for tomorrow.

 

Really, I truly appreciate y'all taking a few minutes of your time to share with me.  You've been extremely helpful.  I'll try to get back and update after tomorrow's appointment.

[AGsMom]

As you all suspected, we are back on a regular diet for the next 6 weeks in preparation for endoscopy at the end of January.  Bless this baby's heart.  This is the part of being a mother that is really stressful.  She's loving the food, but I can see that she's uncomfortable.  And all to take the food away again.  

 

I know it's the right thing to do, but I sure do hate it.  On top of it all, our house has had a stomach bug and now the kids have a pretty bad cold - maybe croup.  

 

I'm going to try to look on the bright side.  At least she can enjoy our family tradition of gingerbread cookies this year for Christmas.  

[africanqueen99]

Can I say that I'm jealous that you get one more gluten filled holiday?  ENJOY the gingerbread cookies!  And make a gingerbread house - it's a huge PITA finding a gluten-free gingerbread house kit.

 

Poor bub, it really does suck putting them back on gluten for the biopsy.  My oldest remembered every painful school lunch during that time.  She was in the toilet more than sitting with her friends eating.

[sunburst]

Keep us update after the scope. This was our experience, too. Immediate rash and then bleeding blisters just after diarrhea. It was terrible. We didn't get the gene test for our 18 month old and her blood panel also came back negative. My husband is celiac, and she got better on a gluten-free diet, so we didn't choose to do the endo although I understand there are very good reasons for doing so. 

 

Yes, finding all the hidden sources of gluten can be very tricky. Does she stay at home with you during the day or does she go to daycare? 

[AGsMom]

She doesn't go to daycare.  We have pretty good control over what she eats.  We're just still figuring it out.

 

The first few days to a week she had a really red bottom, but it has cleared up.  Her stool has still been pretty loose, but it's firming up.  It's giving me some hope that maybe it's not celiac disease after all.  Of course we need to be sure, since it's a serious thing.

 

She loved the gingerbread (we all did).  I'll keep y'all posted.  The scope is at the end of Jan.  Can't get here and gone fast enough for me.

[mommida]

My only concern if it is not Celiac, that the time window for proper diagnoses is still there.  In the case of Eosinophilic Esophagitis, there is also a seasonal trigger.  My daughter was diagnosed when she was six and she is now 11.  We have seen how things really flare up in late summer early fall.  The winter deep freeze that hits (and it came early this year) helps her feel better.  This is a pattern for many EE patients, and most diagnoses come from the late summer flare ups of symptoms.  She had a follow up scope done in late January (after her December diagnoses, it was during a warm December and the deep freeze had not happened yet) after diagnoses and to check the success of an elimination diet, ~ it was free from eosinophilic damage.  Having lived with the diagnoses for 4 years of experience, there is definitely a seasonal "trigger" in her case.  She does avoid other food triggers that were determined from her elimination diet.  Usually in October she will cough up food particles that have become stuck in her throat from the damage.

[foam]

One of my doctors told me I can feed my son gluten without worrying about permanent damage before he's about 8 years old. We had planed to do the gene test sometime about now and see if his WBC count was normal (mines stuffed up with an eosinophilic disease) but I've decided to just not bother him at the moment and raise him grain free. He's six and a half months old only been on solids for about three weeks (just feeding him sweet fruit (mostly mango, apricot, apples, pears), a lot of blended meats and avocado so far but he's doing very well on those foods, the only thing we cook is the meats. He's a bit dodgy with banana so we cut that out for now. He's still on breast milk also but his muscle tone and general feel is very good since he started on solids. I'm totally not a fan of eating grains or legumes any more so feel he's better off without those as they have no real nutritional importance anyway. All the other babies who were born at the same time, whom we hang out with once a week are already on rice and biscuits so I'll watch with interest the difference in diets on how they all perform over time. 

[AGsMom]

We are 3 days away from the scope.  I'm so nervous.  

 

We had some blood work done last week and there were some abnormalities.  After about a day and a half of a lot of anxiety, I've chosen to just believe that those abnormalities are due to the Celiac that we'll be getting positive diagnosis on after the scope and that a gluten-free diet will take care of them.  That's all I can do for now.

 

Poor Baby Girl has had a bad 5.5 weeks on this regular diet.  There have been days of no bowel movements and days of 8-9.  Most days its 4-5 mushy poops and red bottom.  If this is somehow not Celiac Disease, I sure hope they can find an answer quickly.  

 

Please send positive thoughts our way as we prepare to put her under on Friday.  I dread it, but am confident it's the right step for her.

[mommida]

Definitely sending you some positive thoughts!

[ryo]

sending you some positive thoughts.  my daughter was diagnosed in august of this year and i was so nervous going into the scope. she is 5 so was able to understand a little of what was going to happen to her.  it was over really quickly and within a few hours she felt great.  we also were advised to take her off gluten before we went to the GI dr.  I was so mad when we had to put her back on gluten but one doctor pointed out that she had stopped eating right after her blood work was done.  if we had kept feeding her gluten at that point she would have gotten much sicker.  her body needed the quick break before it tolerated the one serving of gluten a day for 6 weeks.  we also have some abnormalities in her blood work that we still don't know if it is related to Celiac.  The first step was the biopsy and official Celiac diagnoses.  we go back to the dr in a few weeks for her 6 month checkup. fingers are crossed these other issues have resolved themselves. 

 

i am not sure why i shared so much but wanted you to know you are not alone  one step at a time and keep trusting yourself.  bug hugs for you and your little girl!

[AGsMom]

Hello Again, All!

 

We finally met with the doctor to go over the biopsy results.  They are all negative! No Celiac.  Great news.

 

She still struggles with diarrhea, but has started to gain some weight.  The plan right now is to get her weight and measurements every 2 months and keep track of the growth chart.  In 6 months we may do some allergy testing.

 

Otherwise, they believe we may just be dealing with an immature digestive system.

 

I've gotta say, I'm still skeptical.  But I'm trying to take it all in as good news and move forward with cautious optimism.  

[mommida]

OK.  Get the full written report.  Did you get pictures of the scoping?

 

While this may seem like a step backward, it still has some valid information for you.  The scoping may have been delayed too long to show the full picture.

 

Keep a food journal.  I say journal, because activities need to be listed.  (i.e. Going to visit farm animals and feeding the horses oats.)  You may be looking for a very long reaction time pattern.