Child Not Getting Better After Being Gluten-Free

[ryannshelly]

Hi. My 10 year old daughter was diagnosed Celiac January this year. She was doing great on gluten free diet and 6 months post diagnosis antibodies were 107, down from 218 with nearly no pain. Fast forward to mid September and now almost everything she eats causes bloating, chest pain and headaches. We've removed some suspected food intolerances from her diet (soy, orange juice) with some improvement, but she still complains of lower left abdominal pain constantly although chest pain and headaches have decreased. She has a follow up appointment with GI next week and I'm looking for possible causes/testing I can inquire about. She also struggles with constipation and takes a Miralax daily. Any advise is so appreciated

[cyclinglady]

Is she consuming any milk products? I assume that she is not getting accidental exposure to gluten.

[ryannshelly]

No. No dairy products either and I'm confident she's not getting gluten

[nvsmom]

The lower left pain is may be due to the constipation.  I used to have pain there frequently when I was blocked up.  It took 9 months of being gluten-free before I had any relief of my C, and that coincided with switching to a proper thyroid medication (hypothyroidism causes C too).

 

I would increase her nut intake (they get many people moving), and possibly have her checked for hypothyroidism.  Hashimoto's hypothyroidism has many symptoms that are indistinguishible from celiac disease; it might be something to check out.

 

I hope she feels better soon.  

[frieze]

since it happened after school started, i would suspect contamination at school, purposeful, ie cheating, or accidental, ie art supplies, etc.

[BlessedMommy]

What about her personal care products? Is her soap, shampoo, and lip balm gluten free? Do you have any pets that she feeds? If so, are the pets on grain free food? If it's regular pet food, does she wash her hands well after feeding them?

[MJ-S]

In order of how I would approach this:

1. I second the idea of exploring what's happening at school/sports or with friends, especially since there's been a sudden change. 

2. Doctor's visit to rule out other health issues.

3. 6 months is around the time that some patients start to report increased sensitivity. If 1 & 2 yield no answers, you may need to look more closely at home.

[ryannshelly]

Thank you all for your replies. She has had her thyroid checked, it came back okay. I also suspected constipation but x-Ray in September looked clear as well. She is very fearful of eating anything outside the home and takes food to school, but I will check again for any contaminants and non food culprits since the relapse appeared after school started. I'm less concerned about the lower abdominal pain since it hasn't even been a year since diagnosis and was more concerned by symptoms to foods we eat all the time (Orange juice, tomato sauce, beans). I hope the appointment next week can offer some help but my feeling is the GI doctor will push colon cleansing as the only remedy

[ArPlasma]

I am really sorry to hear that about your daughter. Our son was diagnosed in January as well and we are still cleaning up everything around us. He got contaminated two weeks ago at school by supposedly gluten-free cookies but baked on a cookie sheet sprayed with canola oil spray which contained glutened.

From the lentils to stoneware, gluten keeps creeping up on us. I keep finding it in places we were thinking about.

I hope you figure out quickly what could be the culprit.

[ryannshelly]

Update - we had a follow up appointment with our GI this week and will know the results of her blood work next week.  Hopefully her gluten antibodies are still creeping toward normal.  She does suspect constipation and put us on a bowel maintenance program, which we will start this weekend.  Fingers crossed it is helpful.  ArPlasma - I hope your son is feeling better soon and we both get the knack for finding these hidden gluten triggers!

[mommida]

Go back to the GI.  Check out the symptoms for Eosinophilic Esophagitis

[worriedseattlemom]

Hi there,

 

How are things going now that it's December? I have a nine-year-old daughter going through something similar, though her main complaint is nausea. She also has a slightly hard and distended tummy at night, chest pain and constipation. Also on Miralax daily. We are going to a new GI doc next week. I'm at my wit's end. We're also going to a naturopath and Chinese practitioner out of desperation. I just wanted to see how she was doing and say *Hugs*. It's so hard as moms watching our sweet kids going through this.