News and Blog

Ages back I gave an update on my son’s health problems having a duodenal ulcer which no one can seem to cure. Well 4 years on from all this having started I thought I should give those who are interested an update. Well, we have done it all:
the dairy free diet,
the wheat free diet,
the blood type diet,
omeprozole for cutting acid from the stomach,
triple drug treatment for helicobacter which has never been found in his system anyway,
steroids,
and now immune suppressive treatment.
So we can’t get much more extreme really for a 12 year old.
He is now (just the last couple of weeks really) keeping much better. We go through stages where he deteriorates though and are not really sure why this ucler keeps recurring. The consultant at Great Ormond Street, where we went for a 2nd opinion before starting immune suppression, did indicate dairy and wheat and perhaps pollen as being the main causes or if not causes then definitely major contributors to internal problems for most people and pin pointed on the day we were there that he had “allergic shiners” or grey bags under the eyes indicating dairy allergy. So as a family anyway that is what we are concentrating on now.
Still under Yorkhill 4 years on we have tried dairy free and wheat free on their own and although his continually blocked up sinuses were much improved on dairy free there was no internal indication of any improvement to the ulcers. The blood type diet we found too extreme for a child as being fussier eaters anyway there was just so much that he couldn’t eat. For an o-type blood: no potato, corn, bread, dairy, but more and more and more that was off the list. The ones on the list were things he hates like fish for example. Just too hard and no follow up help was given.
Now on immune suppression this is really extreme but on a high dose is helping. Or seems to be. In December though I was chatting to one of our GPs who had came across a case of another child who turned out to be allergic to the additives like benzoalate that is in tomatoe sauce and also to tomotoes and this was picked up from a blood test. After taking the child off tomatoes he eventually came off his immune suppressive drugs too and is now healthy. She suggested we get a blood test done to check that and could also recheck wheat and dairy. We had been told all the allergy tests for wheat and dairy and other things had been done and had been negative. However late December results came back showing high intolerance to dairy and a moderate intolerance to wheat. Tomatoe seemed ok. That just added weight to the theory of the consultant at Great Ormond Street that dairy and wheat are problems. In our mind, regardless of whether they are causing the ulcer problem at the very least he must be intolerant to these and going off them in the main must be beneficial. The GP agrees. We have decided to try taking most of us off as much dairy and wheat as we can and strangely certain things have improved for the whole family:
we are losing weight
we are no longer feeling bloated and lethargic
everyone is regular!
the son with the ulcer has had no stomach pain at all
and has not been woken in the night with pain.
There is so much wheat especially in everything we eat that it is very hard to be coeliac and cut wheat completely. Especially for a child used to eating it. However there is so much available on the market now to be able to swap over and reduce the intake that it isn’t impossible. More restaurants too are adding gluten free diets at least. Dairy free is a little tricky. Basically plain cooking with meat and vegetables and no added extra sauces is easy enough, though a little boring.
After chatting to the favourite local Italian restaurant they were nice enough even to make dairy free gelati for us and have introduced a home made gluten free pasta so we can still visit but just no milkshakes.
Also we tried out a clinical nutricianist who has agreed in general that the wheat and dairy will be a problem but also indicated that because of the ulcer ALL FOOD will be a problem anyway as it will go into the blood because of the hole in his gut. She has not removed any consultant tablets but added in vitamins and minerals to help “balance his system” so we will see what happens. I am sceptical but she has had excellent results for various problems with a whole range of people so is worth a try. Anything is really.
Fingers crossed that we can eventually come off immune suppression with dietary changes but we are all using guess work and gut feel I suppose so will have to just watch this space.