Advice please

[Katiexox]

Desperately in need of some advice of possible 🫠 (sorry for the long post but I’m one exhausted mama)

My daughter is just gone 2 years old, for as long as I can remember she’s had problems with her stomach, she was diagnosed with a Dairy and Soy allergy so has been dairy and soya free since around 7 weeks old. I’ve been begging the doctors to listen to me and to look into it, I came across celiac disease a few months ago and pushed for her to be tested. Some of her symptoms are 

- Extreme stomach pain, she’s never had a night where she isn’t rolling around in her bed screaming in pain (not just a cry, she will be fast asleep and then let out a high pitch scream and start crying) this will go on all night!
- Gas, I know gas is normal but she just doesn’t stop all day and night, and it smells so so bad! You can hear her from the other rooms in the house 
- Bloating 
- Slow growth and weight gain she’s still in 9-12 size clothes at 28 months
- Iron deficiency 
- Diarrhoea or constipated, or really mushy 
- Constantly tired 
- Complains of leg pains and gets cramps
- Mouth Ulcers 
- Gets infections like ear and tonsillitis every few weeks

She’s super super fussy with food and just won’t eat! So trying to get gluten into her wasn’t easy as most days she just point blanks refuses 

She had her blood test done last week and they said it came back clear but was showing she was pretty anemic! We are currently waiting for a referral to see a pedantic doctor and her dietician. 

Im just completely exhausted, she’s constantly poorly and miserable and I hate seeing her like this and being fobbed of by doctors who just don’t seem to understand that I know my baby and I know something isn’t right! 

Can the test be unreliable? 

Any advice welcome🥺

 

[trents]

Can you post what blood tests were done specifically for celiac disease, the results and reference ranges if available? If her gluten intake was reduced prior to the blood draw it certainly could result in false negatives on some tests. There is also the possibility that she has NCGS (Non Celiac Gluten Sensitivity). 

[Scott Adams]

Parent-to-parent, I hear your exhaustion and worry loud and clear – what you’re describing goes far beyond typical toddler troubles. Your daughter’s screaming night pain, terrible bloating, stalled growth, and constant infections are textbook red flags for celiac disease or another serious gluten-related condition. While her blood test came back negative, there are critical reasons not to rule it out yet. First, celiac tests are notoriously unreliable in kids under 3 – their tiny immune systems often don’t produce enough antibodies to register on standard blood work, especially if she wasn’t eating consistent gluten beforehand (which you mentioned was a struggle). Her iron deficiency alone is a glaring clue, as it’s one of the most common signs of undiagnosed celiac in little ones.

The fact that she’s already dairy/soy-free yet still suffering suggests something bigger is at play. It could still be celiac (a pediatric GI should consider an endoscopy with biopsies, the gold standard for diagnosis), or possibly non-celiac gluten sensitivity (NCGS) – which doesn’t show up on tests but can cause identical agony. Her recurring mouth ulcers and infections also hint at the immune dysfunction seen in celiac. Until you see the specialist, I’d quietly start a gluten-free trial (after documenting her current symptoms carefully with photos/videos of the bloating and pain episodes). If you see improvement in 3-4 weeks, that’s powerful evidence to bring to the doctors.

You’re not being dramatic – you’re being the exact advocate your daughter needs. If the pediatrician brushes you off, look them in the eye and say: “What else could explain ALL these symptoms together? If it’s not celiac, what’s our next step to stop her suffering?” Keep pushing – moms’ instincts are rarely wrong about this stuff. For now, focus on small wins: snap daily pics of her belly to show the distension, ask for a fecal calprotectin test (checks gut inflammation), and know this internet stranger is rooting for you both. She’s lucky to have you fighting for her.

[DebD5]

10 hours ago, Scott Adams said:

Parent-to-parent, I hear your exhaustion and worry loud and clear – what you’re describing goes far beyond typical toddler troubles. Your daughter’s screaming night pain, terrible bloating, stalled growth, and constant infections are textbook red flags for celiac disease or another serious gluten-related condition. While her blood test came back negative, there are critical reasons not to rule it out yet. First, celiac tests are notoriously unreliable in kids under 3 – their tiny immune systems often don’t produce enough antibodies to register on standard blood work, especially if she wasn’t eating consistent gluten beforehand (which you mentioned was a struggle). Her iron deficiency alone is a glaring clue, as it’s one of the most common signs of undiagnosed celiac in little ones.

The fact that she’s already dairy/soy-free yet still suffering suggests something bigger is at play. It could still be celiac (a pediatric GI should consider an endoscopy with biopsies, the gold standard for diagnosis), or possibly non-celiac gluten sensitivity (NCGS) – which doesn’t show up on tests but can cause identical agony. Her recurring mouth ulcers and infections also hint at the immune dysfunction seen in celiac. Until you see the specialist, I’d quietly start a gluten-free trial (after documenting her current symptoms carefully with photos/videos of the bloating and pain episodes). If you see improvement in 3-4 weeks, that’s powerful evidence to bring to the doctors.

You’re not being dramatic – you’re being the exact advocate your daughter needs. If the pediatrician brushes you off, look them in the eye and say: “What else could explain ALL these symptoms together? If it’s not celiac, what’s our next step to stop her suffering?” Keep pushing – moms’ instincts are rarely wrong about this stuff. For now, focus on small wins: snap daily pics of her belly to show the distension, ask for a fecal calprotectin test (checks gut inflammation), and know this internet stranger is rooting for you both. She’s lucky to have you fighting for her.

This. Scott said it beautifully. Document and start a trial gluten-free diet. I can also recommend an inflammation dietitian I saw last summer if interested. She’s the only one who helped me on a path to healing through an elimination diet. Which is tricky with your little one. But I completely trust her, she’s very expensive though. I figured out I’m sensitive to so many things and follow a gluten-free diet religiously. Just had an upper and lower endoscopy/colonoscopy and zero signs of celiac disease so they said. I’m a celiac since 1997. But my 33 yr old daughter is very gluten intolerant since 20 yrs old.