Blood test for coeliac negative but definitely reacts badly. DS7

[WhyisitOk]

So as above, blood test negative and the hospital have now discharged us. We were initially referred to dietician and paediatrician for allergy tests but as blood tests came back clear, so they have both discharged him.
Ds definitely reacts to gluten and is also cows milk intolerant (although non ige), is it possible he is intolerant to gluten in a way that wouldn’t show up on blood Test/biopsy?
really don’t know what to do, he has had all sorts of issues lately as he’s had to keep eating gluten but in light of all this I feel like just giving him a gluten free diet which would be super restrictive as he’s also df.
ahh… I’m flailing and don’t know what to do… help please!

Ask for a second test and opinion.

Non coeliac gluten intolerance, is a thing.

Thanks both, so would non coeliac sensitivity show up on blood test/biopsy?

I thought the blood test was less accurate for children, but I might be misremembering. Think you should push for the biopsy.

No, it doesn’t. If you google non coeliac gluten sensitivity there are some good sites with all the info on.

The tests aren’t 100% accurate is my understanding so if he feels better without gluten and cow’s milk (which is the absolute worst thing any human could consume in my opinion, if you just think about it for a few minutes why on earth would it be good for us to consume baby cow growth fluid) then just crack on and remove them from his diet.

Also, sourdough bread sometimes is a bit better tolerated so you could maybe try that. Good luck!

https://celiac.org/about-celiac-disease/related-conditions/non-celiac-wheat-gluten-sensitivity/

Which I’m presuming you know as you described it as non gluten sensitivity rather than intolerance

Non coeliac

tbh I’ve googled it a lot and there is so much conflicting info it’s hard to get your head around.
I don’t think it’s a full on coeliac reaction, more delayed gastric issues after a certain tolerance level, but I’m certain it’s gluten that does it.

Well all the main sites promote not eating gluten as the treatment of gluten sensitivity/intolerance, so I would suggest that’s the way to go.

Are you absolutely sure it's gluten and not just wheat?
(Just suggesting this as it would make it slightly easier if you could not worry about barley, rye or oats in ingredients)

I was diagnosed with intolerances and put on a low FODMAP diet by my gastroenterologist. It makes a huge difference when I stick to it and I suffer terribly when I deviate.

Have a look at this to see if it resonates with your son's symptoms.

www.monashfodmap.com/about-fodmap-and-ibs/

It may be the wheat rather than gluten he reacts to.

Fructans found in wheat and lactose found in dairy are both high FODMAP and common triggers of intolerances. The app developed by Monash University in Melbourne helps navigate foods and how to test for it by ceasing all the Fodmaps and then slowly reintroducing to determine which are your specific triggers.

I recommend finding a good FODMAP trained dietician and there are also some great FB groups too.

Snap. Bloods don't show anything but definitely coeliac ( runs in family) I avoid gluten now anyway. Ring coeliac uk, you can definitely have it and it doesn't show up- a number if reasons- iga deficiency is one. You can push for biopsy abd gene test so more him onto the diet yourself. Do ask coeliac uk though they ate great.

My multiple allergy child was allergic to the wheat protein - and still is, tho he eats small amounts regularly as he is more 'stable' than when he goes between not eating and sneaking a treat from someone's (shared) snack at school.

Wheat intolerance is very common now and unfortunately does not show up on a coeliac blood test. It can show as elevated inflammatory markers like raised CRP reading. That happened for me and I finally went off both wheat and cows milk, as they were causing severe indigestion, bloating. Give it a try. Honestly lot if options for your child. White rice was my saviour, excellent for the gut and now am able to tolerate oats too.