To ask you to help me diagnose my daughters stomach issues… I’m desperate!!

[AuntCrystal]

I’ll give a quick summary of symptoms…

DD started suffering from nausea after eating nearly 2 years ago (when she was 8. She’s now 10). Initially, we all thought it was an anxiety thing as covid restrictions had meant we ended up in a long isolation around that time (we don’t live in the U.K.).

This persisted, despite support with her emotional well-being becoming a big focus for us. Other signs of anxiety dissipated, except the nausea. I went back and forth to the GP and they didn’t do much, until one GP suggested trying omeprazole. Finally, that helped! However, it didn’t get rid of the nausea completely. We had a referral for gastro, and they did a gastroscopy. She had to come off the medication for 4 weeks before that. This made her very unwell. She was barely eating at all and the nausea was causing her to spiral into panic attacks after eating, when she did try to eat. The gastroscopy showed esophagitis, gastritis and the valve that stops stomach acid coming up was open. We resumed the omeprazole, which does help to an extent, but the nausea still persisted. She then had a PH test, to check acidity levels over a 24 hour period. They did this test when she was on omeprazole to check if it was fully blocking the acid reflux. The test is come back that the acid reflux is under control. They have done bloods, and she had to do a lactose breath test and they have shown up nothing. They are saying there’s no more they can do to help her. They want to try to withdraw the omeprazole at the end of the year to see if she can now cope without it. I’m afraid for her. She doesn’t like going to friends houses, or school trips or anything like that. She will be sitting with her head in the toilet after 50% of the meals she eats. This has gone on too long now and I don’t know how to help her.

any advice much appreciated.

Sorry, that was supposed to be a summary but I’ve gone a bit OTT with the details 🤦🏻‍♀️

OP, is it purely nausea that she feels after eating, or is it sharp stomach pains? I'm just wondering if the gastroenterologist mentioned dysbiosis?

That's tricky but my dd who is autistic had similar. She was nauseous and anxious. She swore she wasnt tho. All test clear.

No she is out of school and so much better Only really suffers Pre periods now.

She was masking

Obvs everyone is different but anxiety can manifest in mysterious ways.

@Willow12345 its purely nausea. I’ve asked if there is any specific place she feels it but there’s not any pain type feeling.

@HeBeaverandSheBeaver its only associated with food. She absolutely loves ice cream, but you’re lucky if she can manage more than a small scoop in a bowl before the nausea kicks in. Just showing that it happens even with her favourite foods. It will happen after anything really. Toast has always been a safer breakfast option for her but today she only managed half a slice before she felt sick.

I have a similar thing - I have reflux and suspected achalasia - I take Ondansetron as and when needed to keep the symptoms under control.

She would have felt worse coming off the Omeprazole because initially it causes a flare up of symptoms when you first stop it and then it takes a couple of weeks to settle down again - it’s like a rebound effect.

HOWEVER, I definitely noticed my symptoms were worse when my anxiety was bad and when I was almost expecting to feel like that every morning/after eating then sometimes in my head it would make me feel ill even when I wasn’t - now that my anxiety is a bit better it’s made me realise how much my mental health and that expectation of feeling crappy every day actually made me feel physical symptoms that I hardly get now.

Please say she has been check for Coeliac Disease? If not you need to have her checked for that.

Could it be a food allergy? Could she try the plainest of plain diets and then add things in gradually? Could be worth talking to a nutritionist/allergy specialist. Hope you get sorted. Miserable for you and her.

Coeliac disease? What's her ttg? Has she lost weight?

I would consider doing a food diary if you haven't already. Is it all food or specific foods? A lot of children have allergies such as to cows milk protein which is different to the lactose which is sugar. Also I'd ask them what their long term plan is because omeprozole shouldn't be used long term and a cause should be found.

As above - had she been checked for Coaliac? It was one of my symptoms before I was diagnosed later on in life.

Firstly Omeprazole restricts the uptake of nutrients so it's important to get her off that.

Secondly acid reflux symptoms can more frequently be caused by low stomach acid than high.

When you eat chewing stimulates acid production and acid hitting the stomach valve causes it to close.

Omeprazole disrupts this process and conversely weakens the valve although what comes up is less acid to be fair.

Once off meds there's a simple at home bicarb burp test you can try to see if her stomach is acid enough.

Google Dr Myhill Acid burp test.

You may need to supplement with vitamin c after meals if found to be low.

Re the nausea once all tests, focus and discussion around food is removed I'd hazard a guess it will resolve.

Been in your situation. Good luck.

Sounds very similar to my best friends daughter at same age, she had loads of tests as well, omeprazole helping to reduce symptoms. Despite lactose tests being clear her gastroenterology suggested trying dairy free as a last resort when she was 13yr - well low & behold she did turn out to be lactose intolerant. A couple of years dairy free, weaned off medication, all symptos gone. Then reintroduced dairy using milk ladder, she's now in her 20s & not looked back.

My son had this twice, once after the COVID vaccine (finally subsided after 3-4 months) and once after having COVID (again, lasted about 3 months but not as bad as the first episode). I thought it might be constipation and/or anxiety related but he was taking lactulose and that didn't help at all. His endoscope was clear and omeprazol did help but only to a point. It was an awful time and it felt like it would never end. It definitely wasn't just anxiety related although I am sure the anxiety made the whole situation a lot worse. I also found that the less he ate the worse he got and so we had to find ways to keep the intake up. At one point he was eating a tiny amount every half an hour. He is now fully recovered and doesn't get any nausea or gagging. No one was able to give any explanation but I now think it was related to COVID because of the timings and because he never had anything similar before or since.

Have you tried probiotics? If this is partially a manifestation of an IBS sort of picture, they really help some people (though, to be fair, do diddly squat for others).

Weird as my son also has stomach issues like IBS following covid in 2022… it sucks.

Gastroparesis?

My DD is very similar except she actually throws up after eating sometimes. Dr's are next to useless, because she's clinically stable they are taking an age to do anything. Been on and off omeprazole, waiting for a referral to paediatrics. You're lucky to have had a gastroscopy, I wish they'd offer us something like that.

We've tried cutting out food groups to no avail and now she's losing weight slowly so we'll be going back to the Dr's and I'll be stamping my feet this time!

I don't really have any advice just solidarity, it's horrible seeing them go through it. I would be interested to know if you do get a diagnosis though. Good luck x

I vomit after every meal if I forget to take Certirizine.

H Pylori is certainly worth considering. Altered PH levels caused by PPIs (Omeprazole) can make it worse, which could explain why your daughter was worse after stopping the Omeprazole.

Dd was/is like this. She’s been diagnosed with coeliac disease, ehlers danlos syndrome and a hiatus hernia. She struggles eating still. I think she has gastroparesis possibly connected to her EDS.

GP is useless and won’t refer her anywhere. Dd is smaller than a size 4, anaemic, loads of vitamin deficiencies and actually had scurvy earlier this year!

A weird question, it what is her muscle tone like? My daughter has a genetic condition that means she has low muscle tone. Her esophagus doesn’t sit as it should, she has problems with reflux and sickness.

Yes h pylori is worth testing for, it's a simple stool sample and causes terrible nausea and reflux. Can be treated with a combination of antibiotics

I would explore h pylori and gastroparesis. I also struggle with regular nausea, but haven’t found any answers yet.

I could have written this 2 years ago . Dd crippling abdominal , pains horrendous reflux and continual nausea with frequent vomiting. Also.on omeprazole ( minimal.help)and constipation. She was seen by GP and fobbed off untill dh lost it with them peads saw and ran tests . She was tested for coeliac which came back borderline. She by that stage wasn't eating much at all. We had a week with no bread/ pasta by accident, she felt less symptomatic. We cut out wheat / gluten( don't do this unless she's been tested for coeliac) she is now completely fine no symptoms , off meds and more energy than I've ever known. Consultants think she is coeliac as her improvement followed.the pattern they would expect in a ceoliac going gluten free, but we can't confirm as the only way to do so is to restart gluten which she flatly refused to do and at 16 I can't make her.

My son had similar symptoms. Several GP visits, finally gastro specialist and referral for further investigations. It was awful, he was missing school and still had long wait for appointment. In the end we decided to go private to a paediatric gastroenterologist.
First appointment they gave him a fructose solution and he immediately felt horrendous.
He had fructose intolerance - although difficult to manage at least we finally knew what it was.
He couldn't eat anything with any sugar in. After about 18 months he seemed to grow out of it but he still gets relapses sometimes when he's run down or ill.
We might have got there in the end with the NHS but going private allowed us to go directly to a specialist. Obviously I realise we were fortunate to be able to do this.
Fructose intolerance isn't widely known about so something to consider.