Gluten Free Guerrillas
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My son 14 is having IBS like symptoms - suggestions please

My son 14 is having IBS like symptoms, he was prior to endoscopy/ colonoscopy in Sept having constipated issues, he is now poohing between 3/5 times a morning (normally 3 times before school) as you can imagine it now affecting schooling, and causing him to get really stressed.

Tests seem to have come back negative for coeliac disease both previously (few years ago) and recently (September) as I have not heard from the consultant until our appointment which is tomorrow.

He feels nausea, tightness in chest - reflux feelings, aching limbs as well as the constant poohing, he is now complaining of sore eyes and headaches for the last few days. He is also under weight for age but constantly eating, having looked online to try and get other ideas I have come across Eosinophilic gastrointestinal disorders (EGID) and also Diverticular (Which I suffer from) any one have any teenage experience in these problem areas?

Does any one have any similar experiences or suggestions for other test we should ask for. As the doctors are now putting it down to anxiety! which yes, maybe some of the cause is anxiety (maybe 30% ) but there are real symptoms there and it is heartbreaking to trying to find a solution. They are offering CBT sessions but I would like to get o the root of the problems and believe the CBT will help as well.

Responses greatly appreciated.

3 Replies

Hi benjac64.

As you say it could be a number of different things. Have your son's medical team ever spoken to you about Non-Coeliac Gluten Sensitivity? You can still have a serious intolerance to gluten without being a coeliac.

It may also be a completely different food intolerance. Have you ever spoken to a dietician to have these ruled out?

I have friends who are intolerant to a wide range of other foods. They include onions, mushrooms, eggs, monosodium glutamate and cashew nuts. I am intolerant to dairy and Soya besides being gluten-free. Anything like this is worth considering.

There is a small chance it could also be something else in his environment. A guy I know cannot go anywhere near burning incense because it causes headache and vomiting! Maybe this is also worth considering.

It is a known phenomena that anxiety can (and does) cause IBS in many people; however I think you are right to resist going down the mental health pathway until EVERY other physical reason has been ruled out.

Btw, I've read somewhere that there is going to be a free lecture/event taking place at the Oval (the home of Surrey Cricket club) on 25th November. I believe it will be specifically covering IBS and other gastrointestinal problems. Sorry I don't have a link but I think it is being hosted by an organisation called CORE. It may be worth googling for more information on it. Many of these type of lectures are actually very good.

Good luck and best wishes with your son. I hope you can figure out what is causing him to be so unwell.


Hi benjac64, Sorry to hear about your son's problems. That many bowel movements in a morning do sound more like a bad reaction to food rather than anxiety alone. I'd second RegalBirdy's suggestion of asking the specialist if it could be Non Coeliac Gluten Sensitivity. I have NCGS and it caused me IBS, plus a host of other horrible symptoms like aching, low energy, memory fog and even anxiety for many years. You can find out more about it here

The University of Maryland, USA, in particular Dr Alessio Fasano, have done lots of research that confirms the existence and seriousness of gluten-intolerance and its links to auto-immune disease. The UK is way behind on this, so you may have to be pro-active on your son's behalf! The trouble is that NCGS doesn't show up in coeliac tests, but the symptoms gradually worsen over time and can trigger other problems, such malabsorption of nutrients.

Another very in depth article that might be of use is this:

If you don't get any help from the specialist, it may be an idea for your son to do an exclusion diet to cut out all possible food "triggers" like wheat, milk and processed foods. The idea is to slowly introduce them while keeping a food diary looking out for reactions.

This is quite difficult as gluten containing cereals like wheat and barley turn up in the oddest of places and aren't always obviously labelled as ingredients, even the tiniest amount can cause a reaction (For an example oats can trigger a reaction because of cross contamination with wheat, or because of it's own different form of gluten). I think it would be worth the effort, because if it is NCGS affecting your son he will be so much healthier and happier once he feels empowered to deal with it.

Good luck and please keep us informed of your progress or if there's any other info you need. Best wishes, Rita


Hi Benjac64, So sorry to hear about your son, especially at such a sensitive age. I would only add asking your doctor for a lactose test. It is non evasive, you just have to drink a substance a bit like a really thick milk shake and then you are checked every 45 mins I think, cant really remember exact timings, but it usually takes around 3.5 hours or so for a diagnosis. After 1.5 hours I was told to go home as I was definitely lactose intolerant. A bit trying at times trying to avoid all dairy as well as gluten, but it works and has certainly stopped me from being in the loo all the time. I too have diverticular disease, but have never heard of children getting it. Good luck.


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