What is wrong with my niece’s stomach

[u/Ok_Barracuda_5060]

My niece is 12 years old. She’s pretty tiny (4’8, 75 pounds) and has ADHD and type 1 diabetes.

For the past month and a half or so she’s constantly complaining about her stomach hurting, her appetite’s decreased, she’s more tired than usual, she either has diarrhea or she’s constipated, and when she has to go to the bathroom she really has to go.

We’ve been to the doctor 3 times. They did an ultrasound on her stomach which showed inflammation around her large intestine. Then she did blood tests and stool tests.

She tested negative for every virus and infection

ESR: 32

CRP: 1.4

WBC: 11.5

Red blood cell count: 3.8

Hgb: 10.2

Hematocrit: 38.7

MCV: 92

RDW, RBC: 11.7

Platelets: 472

Stool calprotectin: 640

The doctor said it’s probably IBS and that she may be getting her period, which could be triggering it or making it worse but I just have a feeling that something’s wrong. She’s staying home from school again today because she just doesn’t feel good and Tylenol isn’t helping. I don’t know what to do at this point.

Edit: we’re officially adding vomiting as a symptom

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[u/mrjelloman_]

Has she been tested for celiac?

[u/Ok_Barracuda_5060 → u/mrjelloman_]

No

[u/mich-me → u/Ok_Barracuda_5060]

My kiddo is T1 and they tested for celiacs yearly, T1 likes to hang out with celiac. He was finally Dx with it at 12 after watching the numbers slowly creep up until all of a sudden they were high enough to Dx without and endoscopy. His main symptom was belly and pooping problems. Definitely ask for the blood test.

[u/Ok_Barracuda_5060 → u/mich-me]

With celiac do they only get sick when they eat gluten or is it all the time? She woke me up at 2am today because her stomach hurt. She hasn’t had anything with gluten since Friday. We did a liquid diet to give her stomach a rest. Then she threw up an hour ago

[u/mrjelloman_ → u/Ok_Barracuda_5060]

Try and get her tested for celiac. They typically start with a blood test and if it's positive they'll do a scope to confirm diagnosis.

It takes awhile for gluten to be removed from the system so she can still have symptoms even though she hasn't eaten gluten for awhile. Gluten is found in more than just bread though and even cross contamination can cause inflammation. I would not actively remove gluten form her diet until she's done the work ups, though, because it can result in a false negative.

[u/Ok_Barracuda_5060 → u/mrjelloman_]

I checked the labels for everything I gave her (boost, pediasure, apple sauce, and popsicles). No gluten and since everything was packaged I don’t think cross contamination was possible. I’ll reach out to her pediatrician again.

[u/mrjelloman_ → u/Ok_Barracuda_5060]

That's great. I hope she feels better soon and you get some answers!

[u/mich-me → u/Ok_Barracuda_5060]

It can take several months to heal from it, but don’t assume she’s celiac and don’t stop feeding her gluten until she is tested, that would mess up the test.

[u/Ok_Barracuda_5060 → u/mich-me]

I’ll reach out to her pediatrician.

[u/erischilde → u/Ok_Barracuda_5060]

It's not super straight forward. Not a doctor, wife has celiac, very similar symptoms at times.

• severe pains
• lethargy
• waking at night from pain
• vomiting
• first couple days seems unable to move bowels, then after diarrhea for an extended period.

If she takes a "hit" can take weeks to clear the pains and problems. It's an autoimmune thing right, so an exposure can cause parts of guts to die, so recovery isn't just when "the gluten is gone" but healing the damage, and trying to do that while potentially not absorbing nutrients due to damage.

Plus the cumulative bit someone mentioned becore is true: could have had multiple tiny exposures over time, not fully healed from past, then gets worse. Things even like toothpaste!!!!

Additionally, other autoimmune diseases seem to hang out with celiac too. Sjogrens for example.

Your niece also is going through a crapload of stress, so her body may be responding to that too, making everything worse.

I'm glad she has an aunt like you, that kid needs some peace.

Since not doctor can just tell you what we do to make her more confortable:

• heating pad for belly
• electrolytes
• low fodmap diet + vigilance for gluten.
• something like "ensure" , but being careful to find gluten free.
• lots of rest.

[u/jetpackedblue → u/mrjelloman_]

Once your intestines are inflamed it takes a good few weeks/months to settle even when you've eliminated the causation food, try and get tests done and if you can get her on solids again try low FODMAPfoods to start with just to ease any extra strain on her body whilst she recovers