Really Need Advice - Son in pain for 7 months

Don't worry if the stool sample shows nothing along with the other tests results.  When this happens, IBS can be diagnosed which is a better diagnosis than IBD.  The fact that a possible food allergy has beeb picked up may point to IBS.   I would keep a food diary to check for food triggers and ask to be referred to a dietician and ask about the Fodmap diet.

When I developed stomach pain and constipation followed by nausea and loose stools last year, seven doctors were baffled as all my tests were negative.  An eighth doctor diagnosed IBS after three and a half months of panic.  After this, my symtoms started to improve.

I am not sure where you live or what type of medical protection you have and also don't know if you have access to a private MRI and if you can afford to get one on your own. I had to this with my hip replacement - pay for my own MRI and show them the results and I finally got my hip surger. I am not deciding to go that same route for my stomach, pay for the MRI and then wait for results and if it shows something I will then be talking to my doctor. It is just a thought and suggestion because as it says we have to listen to our bodies and take our own action if need be as the medical system these days seeems to be failing us. Good luck in getting some help for your son I feel for him because I know what kind pain I am dealing with.

Hi Michele,

Feeling for you!

The Calprotectin (a white blood cell protein) is a good start.

Though be aware (and docs often take lab results far too 100%) that it is a great parameter to confirm inflammation of the bowel, but not to exclude it.

in 8% of children, in 6% adults this test is false negative, looking in more 'biopsychological' publications, their statistic says 'only 2% false neg', which is still not 0%.

As to Eosinophilic oesophagitis, it is an immunesystem disease, allergic reaction, can be food, but also asthma triggers pollen and other. Please search the internet for it since it can cause abdominal pain. One would also need to know how many eosinophilic leucos were found per unit since this diagnose actually varies highly from lab to lab as count cut off, as when to call it eosinophilic oesophagitis. What some call positive for it, others still count into the normal number. Please read about it.

You should have a blood IgE, the stool can be tested for IgA and Alpha1 Antitrypsin (we did this together with Calprotectin test since the constellation can say something about if food triggered allergic or not), skin patch test for foods.

I would not wipe a positive eosinophilic oesophagitis from the table just like that.

It's a positive test, hence should be started to be tackled and investigated (like mentioned above). Pain is usually more upper belly, but not neccessarily.

Biopsies should have been tested for enzymes (fructase, maltase, lactase) and gluten intollerance to be sure that is ruled out.

To constipation (my girl suffers ascending colon constipation due to a big hanging down loop of transverse colon most likely plus gastroparesis (gastric emptying study confirms it, easy , pain free test) indicating a slow transit function everywhere in GI).

We were on Movicol daily and were asked to increase dose when still pebbles would appear. The experience: yes, Movicol helped, but there was the Movicol movement and then the other pebble movement. One could clearly see, which meal it was, that made it out and we did not take Movicol with every meal.

Since I increased the probiotics to twice a day and take Magnesium Citrate ('Calm' bubbles up in hot water, dilute it with Orange juice as the taste is yuck othwise. Wanted her to take Mg Malate, but the 'pills' are really too big for her to swallow),

the stool becomes more frequent on its own even when we forget to take Movicol. Magnesium has a tendency to push to the diarrhae side, so 1 teaspoon a day is currently enough. 

Also there is always the possibility of the small bowel to really have something despite neg Calprotectin, that cannot be seen via any scopes and small lesions cannot be seen by an MR enterography.This can be investigated with a pill camera even in children. Usually docs wait until symptoms really persist longer than a year.

(Either they can swallow this thing, practice with jelly thingies, or placed during endoscopy. I was disappointed this pill camera was not placed during endoscopy into the duodenum, when there anyway. No, one has to do one thing after the other and go again.....)

I can only say from our experience, that underlaying Ehlers Danlos disease (collagen disease, genetic) does not help the belly and can cause incurable pain. If we knew earlier, she would have not played oboe, carried heavy school bags and done circus. There is no cure, but one can help by a list of do and don'ts. (just look if your son was hypermobile, thumb to underarm? elbow overstretch?)

We also try acupuncture, cupping, chinese herbs, supplements.

Porphyria sets on often in puberty, you might want to investigate this path too and mention to doc.

All the best!