my learning disabled non verbal son I suspect has IBS. He is under the care of a gastro consultant who is treating him for constipation and we thought he was poo holding. Recently I’ve thought this is not the case and he is actually experiencing cramp in his colon when it looks like he is holding. I’ve also noticed certain foods eg pasta give him pain (I can tell by his colour).
We started 3 drops a day of peppermint oil and it does seem to be relaxing his colon and we’re now changing his diet (tricky as he is autistic).
What a horrible condition. Any tips welcome?
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Hello, do you feel the gastro is listening to you? After all, you know your son better than anyone. Do you think he has constipation, as the person who is directly helping him? If he reacts to pasta, does he struggle with other wheat based foods? Sorry, so many questions. My gut health has been much better since eliminating wheat from my diet, including wheat derivatives. I find brown rice pasta works pretty well, and is fairly widely available. Is there any coeliac in your family? I know you will be advocating for him. I wish you all the best.
I thought he was gluten intolerant years ago and so he was tested for celiac disease by gastro, came back negative. He struggled with cows milk which we replaced with almond and he mainly has gluten free pasta but not always (for example if we are out and they don’t have it) which is how I noticed the reaction.
It does appear he has constipation and we thought he had started to hold but when I feel his stomach I can feel what is more like a cramp in his colon at the times we thought he was holding.
I shared with gastro my thoughts which is why he prescribed mebeverine to take before meals. We just can’t get a supply at the moment (widely available in tablet which we crushed and put in liquid but made him sick, I tasted it, it was awful!) so until we can get in liquid form pharmacist suggested peppermint oil.
Interesting about the pasta. That could be a good indication. Peppermint oil helped my son when he had IBS in his late teens. His was due to stress apparently. Although I have a slight reaction to gluten, not enough for a coeliac diagnosis, I eventually found I am very allergic to wheat and react within 20-30 minutes to the slightest cross contamination. You will get some answers, but it might take time.
thank you, I read a very interesting research paper form Norway where they found for most people it’s not gluten they are actually allergic to but fructans which are found in wheat for example. It resonated with me for the types of foods I think my son struggles with
Hi, I take Peppermint oil capsules that I buy from HnB especially when they have them on offer. I take Meberivin tablets for when I get IBS cramps. Someone years ago gave me a Colpermin IBS tablet that you can also buy anywhere and I found that it settled my symptoms. So I went to my GP and I asked if I could have these on prescription? And the answer was no. But he said Peppermint oil capsules do the exact thing. So this is where I've been buying them from HnB .I don't know how but I have come across other people that do get the Colpermin tablets on prescription so I guess it's my bad luck or my GP being tight because they have a certain budget. But I do find the Peppermint oil capsules work and they are also good for if/when you get heartburn/indigestion.
thanks so much for replying, it’s HnB I got the peppermint oil from, goodness it is so strong, got to be very careful it’s only a drop. Pleased to hear it works for you.
Try Heather's peppermint tummy tea from Amazon. My wife of 60 years has IBS, Parkinson's and a colostomy to boot and loves that stuff! I add a tsp of honey to it. She can't wait for that time of day when she can lie down, turn on the (stupid lol) TV and have her tea!👍😀
brilliant! He loves peppermint tea, we have used it for years to release wind. It isn’t strong enough to relax the bowel though sadly, not for him anyway.
Hi I too have a daughter who is autistic and severely learning disabled. Bowel problems sadly seem to go hand in hand with their already complex conditions.
We have struggled for years since baby really and she’s now almost 21.
I can only really suggest things which we have found helpful, which may be different for your son, it’s trial and error. Funnily enough, after much going and going to GP these past 2 years, they have reluctantly agreed to her seeing a bowel specialist! It’s such a fight for good care isn’t it?
So we have noted that certain foods cause flare ups, too much bread/pasta , so these are limited through her week. Fruits/veg with skins on( hard to digest so always peel) I suffer with IBS so this is also my experience and having done the low fodmap diet a game changer!
Onions/garlic sadly too wind inducing. So minimal on these.
Certain cereals particularly wheat based cause a lot of wind/bloating.
Medication wise: buscopan can help and mebeverine has been the most successful to date which she is now prescribed. She takes powders daily to prevent constipation.
Anxiety is also associated with bowel pain, so it may be that your son is highly anxious and this is having an effect on his ability to I open his bowels and cause that pain. I can vouch for how painful it is ( think early childbirth pain) I’ve been hospitalised with it. My daughter self harms whilst on the toilet due to pain, it’s bloody awful to see/hear.
Peppermint is good for releasing wind, however be careful with it as it can also irritate the oesophageal tract and cause discomfort there( just in case he also has ulcers).
My daughter had a colonoscopy at 3 which showed ulceration of the small intestines. Has your son ever had a colonoscopy? It’s worth asking to make sure they aren’t missing anything especially if nothing else treatment wise is working for him.
Good luck and I hope things improve for him soon. X
thank you for sharing! I will definitely ask re colon ulcers, the consultants have agreed to exploratory but it would involve him being under GA and he has a breathing condition so something not to take lightly.
Sorry to hear about what your son is experiencing.
Although not yet proven, there are some thoughts amongst the scientific community about a connection between the microbiome and autism. I wonder if a 3 month trial of Alflorex probiotic is worth a try? I have IBS-C and it has helped me a lot, especially making me more tolerant to a wider range of foods including wheat and the increases in fibre that I have needed to have a BM.
You can also try ground flaxseed on his breakfast, starting at 1 teaspoon and increasing at 1 teaspoon every 2-3 days (to a maximum of 1 tablespoon / 3 teaspoons) - he'll need to consume extra water with it.
I have other tips on increasing fibre, but this might be a good initial start.
If he has been getting on with peppermint, how is he with small pills? I know that enteric coated peppermint delivers more of it to the gut.
Can I also say, what a wonderful mother you are, to have such a handle on what your son is experiencing and taking such great care of him. Well done.
Thanks so much, he takes probiotics, but after researching IBS I have added prebiotics. He won’t take flax seeds sadly even mixed in other foods. He can’t swallow pills at all, even tiny ones, shame as would be a lot easier for him if he could. Thank you for your kind comment, I can only do my best to try and find what is wrong, mothers love 💕💕
very interesting indeed. The gene flaw my son has is also linked to constipation and intestinal issues. As this research says the link has been made but they don’t understand the treatment path yet.
When I had a lot of flare ups (before I realised that artificial sweeteners especially sorbitol were the reason!) I used peppermint oil tablets from Holland and Barrett and they helped to keep everything calm. I would suggest keeping a diary of everything that your son eats and drinks and log any symptoms that happen.
Does he have hot drinks? There is a PHGG which is a prebiotic fibre, it's called Optifibre in the UK and I think sunfibre in the US. It's good because you can put it in a tea or coffee and can't taste it at all. Whereas other stuff you can only put in water and I can't stomach the change in consistency or taste! You would gradually have to increase the dose to prevent bloating and gas. Have a look at the reviews etc
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Anyone used or using Linzess?
Does anyone know if they do SIBO testing on the NHS?
Bloating and peppermint capsules
Constantly taste peppermint 
Does anyone think their IBS is caused by stress/anxiety?
