Help for my son, please

[knitwitty]

This is going to be a bit long winded I'm afraid, but hopefully someone can help me.

My son is 20 years old and has been having problems with IBS type symptoms since he was 17. He is in his first year at Uni, having started 18 months ago only to have to defer his place due to his severe symptoms during the first term in 2015.

We first visited the GP when he was at home, and studying for his A levels, and the symptoms were put down to exam nerves and he was given buscopan and colpermine, they didn't clear up so we saw a consultant, eventually, who put his symptoms down to a reaction to food poisoning some months previously and said they could last up to 18 months.

He went off to university (200 miles away) and things got progressively worse he eventually was able to defer his place on medical grounds and he came home. He was referred for more blood tests, stool tests etc when back at home but each time they came back as normal. In addition he was prescribe anti- depressants. He seemed much bettered and returned to Uni last September.

His symptoms returned, and he now tells me that they never really went away, he has been to see his uni doctor who appears to be much more 'on the ball' as it now appears that his blood tests in the past and again more recently have revealed markers for coeliac disease. He is being referred for more tests which I presume will be vitamin deficiency tests, SIBO and possibly an endoscopy with a biopsy.

I am hoping that someone here can list everything he should ask for by way of tests as I do not want to have him fobbed off any longer , I am furious that his test results were ignored previously and that he has had to suffer and be told that anxiety and depression were the cause of all his symptoms when clearly they were not.

I should add that he does not drink alcohol as I know beer can aggravate IBS/ Coeliac conditions.

As his mum it has been awful not being able to help when he has been so far away and it makes me want to weep for him that his experience of leaving home has been so negative.

I apologise for the length of this post, but please help if you can.

[runswithdogs]

It's been a few years, but I had a whole battery of tests. I suffer from cramping, diarrhea and occasional incontinence. A colonoscopy and endoscopy are key. Others included a hydrogen breath test, some sort of urine analysis (chromatography maybe? To check liver function I believe?), ultrasound to check the condition of other organs and to check the thickness of my intestinal wall (sounded like a new thing at the time, had to go to a specialist, not a regular ultrasound technician).

He should see if he can get academic accommodations for his condition - maybe writing exams separately from other students so he can use the washroom.

Also he should consider getting a phone ap to track food and symptoms. It helps identify triggers and is good to show a doctor. It might be a whole host of things bugging him, from multiple foods to stress and anxiety. If he's celiac, gluten is in an enormous amount of foods that you wouldn't expect. People with digestive issues become expert label readers and I started making my own food - from sauces to baking because then I know what goes in it.

Feel free to send any questions my way, and if he needs someone to vent to I'm happy to help. Hope he feels better.

[knitwitty in reply to runswithdogs]

Hi thanks very much for taking the time to reply, I shall make a note of all the things you have suggested that he gets tested for. His current doctor is quite young and seems to be much keener to test him more thoroughly than has happened in the past.

I am ( and he is too) hoping that he does get a diagnosis of coeliac disease as at least it will be a reason for all his problems, he had such a real struggle during that last year of his A level studies and we asked for special consideration when he was sitting his exams but no help was forthcoming, other than sitting near the back of the exam hall in case he had to leave to use the bathroom.

The uni were much better in that they allowed him to defer his studies, but although counselling was suggested, when he returned home, for his anxiety, we had to wait for 5 months for that and it consisted of 5 sessions of about 35 mins and online follow-up if that didn't suffice.

We trusted that it was not anything physical as we had been told that all his tests were normal.

I shall pass on your username in case he wants to ask you anything else, many thanks again.

[runswithdogs in reply to knitwitty]

Unfortunately for IBS, all tests may be 'normal'. It's kind of the diagnosis once they rule out other problems. Finding out triggers and solutions is a lot of work for people that suffer with it, but it's well worth the effort. If he's not deemed to be a celiac, see if he can get a dieticians support to try the FODMAP diet. It was a godsend for me for identifying triggers. It's a short term diet to help exclude and assess some of the major foods that could be involved. But it's not exhaustive. I have triggers on and off the list - but it was a key starting point for me figuring that out.

[knitwitty in reply to runswithdogs]

Thanks again for taking the time to respond, we are hoping that he gets a diagnosis for something positive as he has shown markers for coeliac disease. I think he would be able to cope much better with that than not really knowing what is the underlying cause.

He like the idea of an app on his phone's he is much more of a technical whizz than me!

At the moment I am advising him to eat as much gluten as possible before he has the more extensive tests in the hope that it will help to identify any problems more easily.

We have noted all the tests you have suggested.

Thanks again for your help.

[knitwitty in reply to runswithdogs]

I also meant to say that I hope you are feeling much better and in control of your condition.

[Nicki1984]

Hello everyone's symptoms and treatments are different and can be trial and error much like what he is going through at the moment. I paid privately for food intolerance tests through Cambridge nutritional health as felt I had an issue with certain types of food but tests said otherwise. The paid tests showed I was sensitive to gluten, wheat and dairy rather than allergic so cut these out of diet. He may also want to consider the FODMAP diet which covers this plus other food items that can be problematic. I take mebeverine prescribed by docs for the ibs and really helps. I also suffer with anxiety and stress can affect IBS symptoms not easy when you don't know what's going on with your body so really feel for him. It's going to be a combination of cutting out the right foods, taking the right meds and stress/anxiety management even counselling or cbt. Good luck x

[Nicki1984]

Ps I've also started taking a probiotic tablet bought in holland and Barrett expensive but heard it's good supposed to promote the good bacteria in the gut. Only been using for a week so can't really report back yet but something else to consider x

[knitwitty in reply to Nicki1984]

Thanks very much for you reply, I hope you have some benefit from the probiotic tablets, There is a product available from Natures Best called "flourish" that helps to increase your good bacteria in your gut but I'm not sure if it is less expensive than probiotic tablets it is in powder form and you either add it to drinks or food.

[Hidden in reply to knitwitty]

Probiotics are only good if they are purchased from a cooler unit in a store. They have to be alive. They're specific strains for symptoms being suffered...so research is vital for the correct one/s. A broad based probiotic pill, powder can do harm as well.

[knitwitty in reply to Hidden]

Thanks very much for you response I shall look into this before recommending he tries any.

[Lolacabana]

I have recently undergone the York ibs testing to identify intolerances, and am feeling optimistic after only a week of cutting dairy and yeast, as the ibs seems to be improving. It is expensive (£319), but worth it if the results are life changing.

May be something to consider.

Hope you find the answers soon, and your son starts to enjoy life.

[knitwitty in reply to Lolacabana]

Thank you so much for taking the time to respond, I am glad you are starting to feel better.