Daughter having stomach aches again, 7 months out from diagnosis

[E's mom]

Hello! I'm new to posting here but have observed for a little while.  I'll give background first and bring us to my current concern.

My daughter, age 3 at the time, had been complaining for a couple of months of stomach aches. Would sometimes alter her activity levels or appetite, but otherwise wouldn't change too much of her lifestyle. She also had an extremely bloated belly, but at the time I didn't consider it a symptom as I assumed it was just toddler tummy. After two visits to her pediatrician, they ran the blood test for celiac. It came back glaringly positive. We followed up with an endoscopy; positive also.

So since June she's been gluten free.  She also has two other AI diseases - lichen sclerosis and alopecia arreata, as well as chronic ear infections so is on her 2nd round of tubes. Besides all of that, she's been a relatively healthy, happy kid.  We did have her blood levels run once more a few months after, since she was dealing with chronic headaches that started post diagnosis but are now gone. The only other weirdness we've seen is something she seems to have staring episodes, and once school couldn't get her to really wake up after a nap. Not sure if she's just a deep sleeper or if there's something neuro going on.

She's four now, and we've been gluten-free since June 1. She is in school and although they've glutened her once, we have a great system down and I don't think she's ingesting any gluten there, although she isn't the greatest at keeping her hands out of her mouth. We have a 99% gluten-free household, and anything with gluten isn't around her.  But for the past 2 months she's been complaining of stomach aches again. She says they feel like they did before her diagnosis.  I'm just wondering what I should be looking into, what about or if I should worry. I do have a call into her GI dr. We see a GI at the University of MN who specializes in Celiac, but I do wonder if maybe we should try to get into Mayo. 

I just want my little girl well. Any thoughts?

[cyclinglady]

1 hour ago, E's mom said:

Hello! I'm new to posting here but have observed for a little while.  I'll give background first and bring us to my current concern.

My daughter, age 3 at the time, had been complaining for a couple of months of stomach aches. Would sometimes alter her activity levels or appetite, but otherwise wouldn't change too much of her lifestyle. She also had an extremely bloated belly, but at the time I didn't consider it a symptom as I assumed it was just toddler tummy. After two visits to her pediatrician, they ran the blood test for celiac. It came back glaringly positive. We followed up with an endoscopy; positive also.

So since June she's been gluten free.  She also has two other AI diseases - lichen sclerosis and alopecia arreata, as well as chronic ear infections so is on her 2nd round of tubes. Besides all of that, she's been a relatively healthy, happy kid.  We did have her blood levels run once more a few months after, since she was dealing with chronic headaches that started post diagnosis but are now gone. The only other weirdness we've seen is something she seems to have staring episodes, and once school couldn't get her to really wake up after a nap. Not sure if she's just a deep sleeper or if there's something neuro going on.

She's four now, and we've been gluten-free since June 1. She is in school and although they've glutened her once, we have a great system down and I don't think she's ingesting any gluten there, although she isn't the greatest at keeping her hands out of her mouth. We have a 99% gluten-free household, and anything with gluten isn't around her.  But for the past 2 months she's been complaining of stomach aches again. She says they feel like they did before her diagnosis.  I'm just wondering what I should be looking into, what about or if I should worry. I do have a call into her GI dr. We see a GI at the University of MN who specializes in Celiac, but I do wonder if maybe we should try to get into Mayo. 

I just want my little girl well. Any thoughts?

I would start by asking for another round of celiac antibodies tests.   Be sure to include the ones that were previously positive and then add the DGP tests.  The DGP tests in some studies seem to do a better job of detecting dietary gluten.  All antibodies should be coming down.  

Often it can take a year or longer for antibodies to come down for a variety of reasons.  One main cause is hidden gluten.  If so, consider the “Fasano diet” (see link).    It is basically non-processed meats, veggies, rice and fruit.  Once she feels better, you  can add back in other gluten free foods.  Sometimes, a person can not tolerate a lot of gluten free processed foods.  Sometimes, due to a  leaky gut, it is not just gluten but other foods, like dairy.  Hard to identify, so keep a food journal.  

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So, get that test to see if gluten is the culprit.  I hope she feels better soon!  

[Ennis-TX]

I would say keep a food diary and write down everything she eats, how it is fixed, seasoned etc. See if you can identify a pattern. Many times those of us with this disease develop other food intolerance issues. For now knock her down to a unprocessed whole foods only diet, remove dairy also for a few weeks/months. Dairy, soy, and oats are normally huge issues that many celiacs develop issues with other common issues are things like night shades, and legumes. She could also might have developed another AI issue like UC but at her age  I highly doubt it.  It could also be hidden gluten like playing with playdough or perhaps getting a snack from somewhere at school.

[desirun]

Agree with above- retesting her TTG antibody levels should shed some light on the situation.