Reaction to gluten or gastro bug?

[Beck1430]

Hi there,

I'm looking for some advice for my 2 year old.

After he turned one he started eating more foods like pasta and breadsticks and our supermarket finally started to stock a soy free bread (he has an intolerance to dairy and soy) so he started eating bread for the first time. 

He began having foul, loose nappies, which I assumed must be teething, but this went on and on for a couple of months. Coupled with that, he started having patches of red scaly skin, a little bit like eczema but more widespread. He was also very tired and quite miserable. Given that it all coincided with him starting to eat a lot more gluten, his dietician recommended I eliminate gluten to see what happened. His poos immediately changed back to normal and were finally formed, and he’s been off gluten since last summer.
 

Fast forward 6 months and we did a wheat challenge yesterday, giving him a small breadstick at about 11am. He seemed ok through the day but 11pm he woke up vomiting, and was sick 3 more times over the course of 90 minutes and was writhing in pain on the floor crying about “poo” which never came, and today he has done a normal poo. 

My two questions are:

Is it possible that this was a reaction to the gluten if it came 12 hours after ingestion? Or is that too long to cause vomiting? I wonder if it’s more likely an unrelated bug but can’t work out where from as we’ve had a quiet week. Would there not be loose stools too if it was a reaction to gluten? Before going gluten-free, this was his main symptom!
 

If it could be the gluten that caused this, where do we stand with ever testing for coeliac? Now that I know more about the testing I don’t know why his dietician didn’t recommend we do that before removing it from his diet before. Seems cruel to make him ill for the sake of a test.

Grateful for any pointers or advice. Thank you! 

 

[cristiana]

Hello @Beck1430 and welcome to the Forum.

I am sorry your little boy is going through this.

Your question is an interesting one.  I would say the majority of posts I have read since joining this forum speak of a fairly quick reaction, and that has been my own experience.  The only major gluten hit I've had in more recent times resulted in chills, dizziness and vomiting about 2-3 hours after eating gluten.  It was truly horrible. 

The fact that I vomited was new for me - I didn't get diarrhea which had been my classic reaction in the past.  It was as if in going totally gluten free my body has decided to react more violently to gluten, and quite differently.  Reactions can change over time - the fact that your son is reacting differently doesn't necessarily mean that gluten isn't the culprit.

Anyway,  this study is interesting in that it states that it is possible to react 12 hours later.

https://www.schaer.com/en-us/a/how-long-after-eating-gluten-do-symptoms-start#:~:text=A survey published in Alimentary,by 12 hours or more.

I am afraid the only way you will probably know for sure is to repeat the challenge again, but I can completely understand your reluctance to do that. 

I wonder if I can ask a couple of questions:

Regarding the rash - has that also subsided since giving up gluten?   There are quite a lot of photos of dermatitis herpetiformis to see online, I wonder if you think what your son had/has was similar? Also, do you have coeliac disease in the family?  It is inherited and if you have others in the family, that could point more strongly to your son having coeliac disease.

Cristiana

Edited January 23, 2025 by cristiana

[trents]

I think you know enough to conclude that your son either has celiac disease or NCGS (Non Celiac Gluten Sensitivity). As soon as you removed gluten from his diet his stools firmed up. It is also very common for celiacs to be intolerant of dairy and soy, so that is another piece of corroborating evidence. If I were you, I would consider getting your sone genetically tested for the genes we know are associated with celiac disease. There are two main genes looked for, HLADQ2 and HLADQ8. Having either or both provides the potential for developing celiac disease. But since about 40% of the general population have one or both of the genes it cannot be used to diagnose celiac disease. But it can be used as a rule out measure if both are absent, thus pointing one in the direction of NCGS. If one or both are present, there is the possibility of either celiac or NCGS. NCGS is 10x more common than celiac disease by the way. The two conditions share many common symptoms. The difference being that NCGS does not damage the lining of the small bowel as does celiac disease. Celiac disease is actually an autoimmune disorder. At any rate, both conditions require a gluten free diet so, at the end of the day, that is the antidote for both. Some experts feel that NCGS can be a precursor to the development of celiac disease. 

I would also make mention of the fact that once gluten is removed from the diet and then added back in for the gluten challenge, reactions are often more violent as all tolerance has been lost.

[Beck1430]

Thank you both so much for taking the time to reply. 
 

Cristiana - yes the rashes seemed to resolve when he came off gluten too. I haven’t seen those pictures before, thanks for pointing me to them. I’d say his rash isn’t like the more severe photos which are scabbed and very bumpy. His rash is more like lots and lots of patches of eczema than spots. No we have no celiac in the family to my knowledge, though my mum and sister both have autoimmune diseases and wheat sensitivity. I think you’re right and I’ll have to do another trial to confirm if it was the wheat. I’ve been hoping all day that I come down with the bug to rule out the wheat reaction! But the rest of the family are absolutely fine. 
 

Trents - thank you for the info regarding the genes. That’s very interesting and I’d definitely consider doing that as a way to rule it out without putting him back on wheat. I also didn’t know celiacs were commonly intolerant to dairy and soy. I think you’re right and there is definitely enough factors to show something is going on. I think I’ll do a repeat trial of the wheat challenge and if he reacts again I shall look into the genetic testing. 
 

Thank you both so much for your time.

Becky

 

 

 

 

 

[cristiana]

Hi @Beck1430

You are very welcome.

I am looking at your spelling of coeliac disease and see you spell it the English way.  If you are British, like me, perhaps you could update us if you are successful in getting genetic testing.  It seems more commonplace in the US.   I have been a diagnosed coeliac since 2013 I have not yet met anyone with coeliac disease who has had this testing, or members of their family, through the NHS, and I'd be most interested to know if you are offered it.  

Cristiana