Help with test results

[Asterix]

Hi,

I am very new to this forum and have been amazed with the amount of knowledge here.
I am hoping for some help with my situation.

My daughter (age 5) has been having very severe stomach pain over the last 12 months - so bad that she was unable to attend school for the last week.
She was diagnosed with coeliac disease at the start of june and has been on a gluten free diet since then.

We are due to meet with GI consultant next week with the hope of some help.
She has had the following test results -
Calprotectin - 570
lactoferrin - 22.8 (range <7.03)

Just wondering if we should be pushing for more tests or would being ceoliac account for this level of pain.

Thanks for your help.

 

[David]

Welcome to the community. I'm so sorry about your daughter

Has the gluten free diet reduced her pain? Does she have any symptoms besides the gut pain?

If the gluten free diet doesn't begin reducing her pain by the time of the doctor visit, then yes, I'd definitely push for more testing. Though I suspect the doctor would want to do more tests without you pushing.

 

[crohnsinct]

Celiac can raise fecal calprotectin. How was she diagnosed? Were scopes done? Upper and lower?

 

[Asterix]

Hi David,

Thank you for your reply.
Initially we thought going gluten free helped, but over the last 2 weeks it has been pretty tough for her, most days a few episodes of what appear to be very painful stomach cramps.

Isabel has Autisim and limited speech so it can be difficult to know exactly what is going on, although pain seems to be the main symphom, but sometimes she does seem to get relief from burping.

I hope your right about more tests, she has had an MRE,barium swallow and endoscoopy, so maybe a colonoscopy might shed more light on whats going on.

Thanks again.

 

[Asterix]

Hi Crohnsinst,

As far as i can remember she was diagnosed after having an Endoscopy. (She had a few tests done around the same time)

We are hoping on a colonoscopy, but in our last letter the GI contultant said she wouldnt be doing one of those, although we are only meeting her for the first time next week, so will know more then.

THanks

 

[David]

This is all theoretical but it is something I have been working on. The main means of breaking down pesticides such as organophosphates is via an enzyme called paraoxanase. It turns out the subpopulations who have the lowest paraoxanase activity are people with autism and Crohn's.

http://www.ncbi.nlm.nih.gov/pubmed/16297937
http://www.ucdmc.ucdavis.edu/publish/news/newsroom/8978

Point being, you may think about going organic with your child.

 

[Mehita]

It can take a good six months to a year to find relief from a gluten free diet. Typically kids respond faster than adults. We saw an improvement within days, but my son's GI wouldn't officially declare Celiac until he'd been feeling well for over three months on the GF diet.

Another thing to consider is that many newly diagnosed Celiacs are also very lactose intolerant since it's the tips of the villi that process lactose and typically with Celiac, those villi are severely damaged. Have you noticed an increase or decrease in symptoms with lactose?

 

[Asterix]

Hi David,

Thanks for those links you sent, very interesting. We try to have Isabel on as much organic stuff as possible, but maybe we should increase our effort.

Thanks

 

[Asterix]

HI Mehita,

Thank you too for replying to my post.
We are hoping that the gluten free diet will help, but suppose we are wondering if being ceoliac could cause this level of pain.

She has been dairy free for more than 2 years.

Cheers

 

[Asterix]

UPDATE:

Hi,

So following on from my last post, my daughter was diagnosed with Small Intestine Bacterial Overgrowth.
She has been put on an antibiotic for 1 week, off for a week, on a different one for a week, off for a week, back to the first one for a week.....and so on.

I was wondering if anyone has experience with this regarding treatments, probiotic use, foods to eat/avoid..

We havent really been given much more than the antibiotics only to be told that its a very slow process of healing.
Any help would be appreciated.

Thanks