[HeroOfCanton]

Hoping someone can help me out with any suggestions to discuss with our GP in the new year - I'm a bit all over the place with this, so bear with me!
Long story short is this:

DD (2.5) had a terrible nappy rash that started almost 18 months ago, we had no luck with anything we tried, saw saw 3 GP's who prescribed different AB's to see if it was something in her gut, didn't work. Went to a dermatologist, and after trying disposable nappies, more AB's, creams and fairly harsh steroid creams, we got almost nowhere. The only thing that ended up helping was cornstarch, but it only helps to a degree. It finally came up at mothers group, and another mother mentioned that her son had been through something similar, and that it ended up being a problem with gluten that was making his poo so harsh it basically burned his bottom. It also meant he had a lot of trouble becoming poo-trained, although he had been dry for quite a while.

I saw our GP, and he said it didn't sound like a gluten problem, but in his experience, gluten issues are often quite far from 'textbook' - I had told him that she was a bit better when DD had less bread (often has 2 slices at lunch) . He ordered a blood test for DD, testing for Celiac disease, along with other deficiencies (iron etc).
We went and had the blood test, but DD was very distressed, and they didn't get enough blood for any of the tests - they needed 3 vials.

Before going back for a re-test, I did some research, and decided we would try a week of lactose free eating, then a week of gluten-free for DD. The lactose-free week helped a little, and the gluten-free week seemed to help a lot - DD had poos that I could roll into the toilet, instead of scrape off her nappy.

As I told the doctor, she doesn't seem to have any classic signs of celiac disease, but that bread is her main problem. I'm concerned that a blood test will only tell us if she has celiac, but not if she has a sensitivity (if that's the right word) to gluten.
I'm hesitant to take her off gluten altogether, because I've been led to understand that gluten is important in a diet if you're not intolerant.
Sorry for the life-story, all I really wanted to ask was: Is a blood test the best answer? or is there something else I could bring up with the GP to try first - I'd like to spare DD the trauma again if possible!

Thanks

This post has been edited by HeroOfCanton: 29/12/2012, 06:18 PM

[Luxe]

It's definitely part of the mix to find out if you have gluten issues. If they are going to do the blood test (IgA, IgG etc), make sure they do the Gene test at the same time to cover both bases.

It's possible to get a false negative on the blood test from what I understand. I was very high in the range but not a positive, yet I have two gene's that make it possible I have Celiacs.

Don't go completely off the gluten like I have. The symptoms are much worse going back on to it again. Do all the test's first before stopping the gluten.

[Sinister Bonnet]

If the issue is intolerance it's OK to go gluten free for a trial period of time as a method of testing the idea.

The conventional testing is really only useful to rule out coeliac--a gene test is a very good idea as well as the bloods.

I've never known anyone with an intolerance who did a trial of GF to be really sick when the trial ended. It's a common experience for coeliacs but it doesn't seem to be for those with intolerance.

[FiveAus]

My teenage daughter has just been tested for coeliac disease. The blood test was negative, the gene test was positive (it's rampant in my family) so they did a gastroscopy and she doesn't have it. So next step is a colonoscopy to see if it's Crohns disease.
Whatever she's got it's nasty, she's down to 42 kgs (should be around 48-50).

Would the doctor so a gastroscopy on a baby? It gave the definite answer for coeliac disease.

[HeroOfCanton]

Thanks Luxe, I'll be sure to mention those to the GP, as IgA, IgG weren't on the pathology request - the only gluten related one was HLA...?
I'm trying a few gluten-free and low gluten recipes to try & limit her intake, would this affect her blood test results at all? as in, does she need to have lots of gluten in her system to see if she can't handle it?

Balzac, I'll be sure to ask about the gene test too.

FiveAus, our GP is pretty 'hands off', and tries to avoid procedures on kids (well, anyone) until they are really the last option, so I don't imagine he'd order a gastroscopy for her at this stage.
I was a little surprised that he didn't discuss going gluten free for a while before the blood test even, but I didn't have the chance to question as DS was being very fussy & DD was upset from having her tummy examined (he checked for a bowel impaction or blockage I think).

Thanks for the suggestions everyone!

This post has been edited by HeroOfCanton: 29/12/2012, 06:37 PM

[Beags]

The blood tests for coeliac disease are not definitive, they can have false pos and neg results (the ttg and IgA tests) and the gene test just shows there is a chance of cd. The only way to truly diagnose cd is via a small bowel biopsy. Also a blood test won't tell you if she is intolerent to gluten either. She should be having gluten though in order for the cd tests to show if she may have coeliac disease, after the tests though I don't think gluten is essential in a diet as long as she eats healthy foods.
Also the symptoms of cd are widely varied and many people don't not have the typical symptoms.

This post has been edited by Beags: 29/12/2012, 06:36 PM

[Sinister Bonnet]

The gene test is useful though for ruling out coeliac--if you don't have the gene it's incredibly unlikely to the point of impossible that you have coeliac.

Biopsy is the gold standard and you do need to be eating gluten to get a result. Even a biopsy can miss coeliac though. It is rare but can happen.

The GP is not the person who would order the biopsy. That would be the gastro or the surgeon. You're well within boundaries to request a referral to a paed surgeon. Unfortunately you're unlikely to be triaged for a gastro without way worse symptoms.

FiveAus when they do the colonoscopy, ask them to do another biopsy. It's possible to have damage to villi in other areas of the bowel and feasible that the gastroscopy missed damage.

[Chocolate Addict]

I wouldn't cut out gluten if you are having blood tests done.

We had my son tested a few months back and one reading came up a little bit above where is should be. Should be 20 or lower and one of his was 25 (no idea what the test was).

We have to go back next month for another blood test to see if the levels have changed. I thought the Pead would say to cut back on gluten but he said to get more in to my son if I could. lol

I am hoping the number comes back the same or lower as I am not keen on him having a biopsy which is the next step.

[Tonberry]

Don't go completely off the gluten like I have. The symptoms are much worse going back on to it again. Do all the test's first before stopping the gluten.

Second this. DP was GF for about a month, then decided to try some garlic bread, as he thought it wouldn't affect him too badly as he hadn't seemed overly sick while eating gluten foods before.

He honestly swore he was dying, was sick for two weeks and ended up in hospital for a night with 5 IV fluid bags put through him - all from 4 slices of garlic bread.

He hasn't had the proper tests done as there is a wait to see the specialist, and he's not sure he'll bother now as he doesn't want to have to eat gluten containing foods before having the tests.

[HeroOfCanton]

Second this. DP was GF for about a month, then decided to try some garlic bread, as he thought it wouldn't affect him too badly as he hadn't seemed overly sick while eating gluten foods before.

He honestly swore he was dying, was sick for two weeks and ended up in hospital for a night with 5 IV fluid bags put through him - all from 4 slices of garlic bread.

He hasn't had the proper tests done as there is a wait to see the specialist, and he's not sure he'll bother now as he doesn't want to have to eat gluten containing foods before having the tests.

God, that sounds awful!

Thanks again for the advice. I'll just keep doing what we're doing for now until we see the GP again soon after New Years. I won't make an effort to keep her off gluten - maybe just start keeping he rot one slice of bread a day...