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Gluten intolerance vs insensitivity


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#1 HeroOfCanton

Posted 29 December 2012 - 06:17 PM

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 sad.gif - 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 original.gif

Edited by HeroOfCanton, 29 December 2012 - 06:18 PM.


#2 Luxe

Posted 29 December 2012 - 06:26 PM

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.

#3 sad small umbrella

Posted 29 December 2012 - 06:30 PM

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.

#4 FiveAus

Posted 29 December 2012 - 06:32 PM

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.

#5 HeroOfCanton

Posted 29 December 2012 - 06:32 PM

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!

Edited by HeroOfCanton, 29 December 2012 - 06:37 PM.


#6 Beags

Posted 29 December 2012 - 06:35 PM

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.

Edited by Beags, 29 December 2012 - 06:36 PM.


#7 sad small umbrella

Posted 29 December 2012 - 07:03 PM

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.

#8 Chocolate Addict

Posted 29 December 2012 - 07:09 PM

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.

#9 Zahhy

Posted 29 December 2012 - 07:13 PM

QUOTE
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.

#10 HeroOfCanton

Posted 29 December 2012 - 07:17 PM

QUOTE (Tonberry @ 29/12/2012, 08:13 PM) <{POST_SNAPBACK}>
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...


#11 sad small umbrella

Posted 29 December 2012 - 07:18 PM

While my DH and DS went back on gluten after ten years of GF eating and both of them had zero issues at all.

DH is back on gluten prior to a coeliac biopsy and he is going to be livid if he is coeliac.

#12 Zahhy

Posted 29 December 2012 - 07:24 PM

QUOTE
While my DH and DS went back on gluten after ten years of GF eating and both of them had zero issues at all.


I wonder if it has something to do with the length of time GF? Your DH and DS would have had time to heal whereas DP would have only just been starting to heal?

Can't believe the difference it's made to him by the way - Like your DD OP, he had the run around from GPs for years, diagnosing various bacteria and sticking him on all sorts of antibiotics, nothing helped, but he started feeling better in a couple of days from going off gluten.


Hope you can get some answers soon for your DD.

#13 Meelamay

Posted 29 December 2012 - 07:27 PM

Definitely get the blood tests as a screening measure... if they come back as a positive you'll get your referral to the paed gastroenterologist for an endoscopy to confirm any diagnosis.  My daughter had it when she was 2... my GP considered that young, but the specialist had dealt with those who were younger.  They consider only the biopsies to confirm diagnosis.  

After the bloods came back positive for elevated IGa we eliminated both lactose and gluten from her diet.  Her improvement was almost immediate after eliminating gluten.  It may have not been in line with what the doctors wanted to get the most emphatic diagnosis... The endoscopy was 6 weeks later and even with this her biopsy came back positive... but as far as I was concerned it was 6 weeks of her life she wasn't suffering with constant acidic runny poo... and her response was enough for me without a definitive diagnosis in case it came back negative.

Also be aware of how the villi work... removing lactose from the diet shows improvement because its the tips of the villi which are first damaged - and they are what process the lactose.

If it is CD.... it is a great age to discover this.  My daughter is now 4... she understands what she can and cant eat and how she will feel if she eats the wrong thing.  It is just her life... she knows nothing different and loves her meat and three veg!  Not only that but in changing the families diet you'll notice yourself the difference in how you feel when you have a binge on bread or pasta versus when you're all eating gluten free.

#14 sad small umbrella

Posted 29 December 2012 - 07:28 PM

I definitely think DH's gut has done some healing but I don't think he is coeliac.  None of the issues which led to him going GF have come back.

DS is allergic to virtually everything and we ended up with him back on gluten after he developed a rice allergy. At least the decade off gluten meant we had a food in reserve to trial wink.gif

#15 FiveAus

Posted 29 December 2012 - 07:37 PM

QUOTE (HeroOfCanton @ 29/12/2012, 07:32 PM) <{POST_SNAPBACK}>
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).


Yes, these pretty much are "last resort" procedures. My daughter is losing too much weight and no matter what they try she's not gaining. She's getting to a point where it will start to effect her heart and repro system.
She has constant diarrhoea, and has done for months.

I hope you find answers for your poor little mite soon. it's such a worry.

#16 sad small umbrella

Posted 29 December 2012 - 08:05 PM

A routine biopsy in a symptomatic child is not a last resort procedure.  It simply is not a huge drama if it is necessary.  Some of us with very sick kids have them done quite regularly.

This is not meant to be snarky BTW, it is meant in the spirit of do not build this procedure up into a major major last resort test.  If your kid needs it, they need it.  Mine's undergone way more unpleasant testing with the scopes from both ends added on as while he was under we may as well check if there is anything new and exciting.

#17 HeroOfCanton

Posted 29 December 2012 - 08:22 PM

TBH, it's not affecting her as badly as I've been told CD would, it's really only her poo and in turn, her bottom that seem to be the issue.
She's not losing weight, sleeps well, has no behaviour issues etc, so I think that at this point, anything more than blood tests would be a bit drastic - although Balzac, I understand what you're saying about it not being a huge drama.

Meelamay, I get what you're saying about it being a good age to discover it & change her diet - it could end up being quite positive for all of us (DH & I eat rather badly when the kids aren't looking!).

I'm not sure if I want it to be a gluten issue or not though, our families can be rather blaseĀ“ about this sort of stuff, so that part of it could be very difficult.
But on the other hand, we'd like for her to be able to know when she has to poo and not have it hurt her so much.

Thanks again for the advice & stories.

#18 Beags

Posted 29 December 2012 - 09:55 PM

It's still worth checking for coeliacs, I know people who have it (diagnosed by biopsy) but hardly have any symptoms if they eat gluten. However it's best to know and adhere to the diet if you have coelia s to redu e the risk of things like bowel cancer.
FiveAus what your daughter is going through sounds similar to my cousin, he was eventually  diagnosed with ulcerative colitis, which is a horrible disease, so I hope it doesn't come to that for her, but maybe worth considering just in case.



#19 neev

Posted 01 January 2013 - 01:21 AM

We have a similar story with 3.5 DD, her nappy rash was bleeding from when she was 2 from constant runny poos. We went gluten free and it completely cleared up and we were able to toilet train her and she was much happier and healthier.

This year we went to a paed allergist to try and figure out what the exact problem is. She has just finished a 6 week gluten challenge (2 slices of bread a day) and got really sick sad.gif She was lethargic & tired, had liquid poo, bad tummy pains, vomiting at night and pretty awful behaviour unsurprisingly. We will get blood test results later this week and will find out what the next step is.

Someone here posted a link to this helpful info on coeliac testing
http://www.coeliac.org.au/coeliac-disease/diagnosis.html

Also, with the blood test we went to a pathology collection place that was big enough to be good at paediatric blood collection, they made it as easy as possible and 3.5yr DD is very proud of her certificate for being brave original.gif

#20 ~Joanne~

Posted 02 January 2013 - 08:42 AM

QUOTE (Balzac @ 29/12/2012, 09:05 PM) <{POST_SNAPBACK}>
A routine biopsy in a symptomatic child is not a last resort procedure.  It simply is not a huge drama if it is necessary.  Some of us with very sick kids have them done quite regularly.

This is not meant to be snarky BTW, it is meant in the spirit of do not build this procedure up into a major major last resort test.  If your kid needs it, they need it.  Mine's undergone way more unpleasant testing with the scopes from both ends added on as while he was under we may as well check if there is anything new and exciting.


I totally agree! To quote Coeliac Australia....link below "A Small Bowel Biopsy is Essential" for diagnosis. The diagnosis needs to be properly medically established as blood screening is not always accurate especially for those under 4 years of age. A gene test is useful but doesn't mean that a person has CD or will develop CD in their lifetime. It just increases the chances.

http://www.coeliac.org.au/coeliac-disease/diagnosis.html

I have been biopsied along with DH and three children. Turned out whilst myself and two of my sons threw a positive blood test CD was ruled out via a biopsy. I later found out that suffering reflux can affect the results. Unfortunately my other son (21 months at the time) and DH were not so lucky. Their biopsies were positive.

Personally I'm glad we took the extra steps to confirm and exclude a diagnosis of CD. It would have been easy to put the entire family on GF given the screening results but it would have been totally unnecessary given our biopsy results.  




#21 sueb31

Posted 02 January 2013 - 08:56 AM

For the OP, the 'HLA' on the form is the gene test. If you haven't gone back for the bloods, be sure to get some EMLA anaesthetic cream for your child, it's great stuff.
If it comes back negative, it is 99.5% accurate that they don't have coeliac disease and depending on the situation, you may not need a biopsy. If it is positive, there is a 1 in 25 chance it will be coeliac disease so a biopsy is usually warranted.

These stats apply only to the more recent gene (HLA) testing, not to Ig levels.
Sue

PS and of course, the gene test won't be affected by how much gluten you eat, whereas the Ig levels will.

Edited by sueb31, 02 January 2013 - 09:11 AM.


#22 javic

Posted 11 January 2013 - 11:53 PM

QUOTE (neev @ 01/01/2013, 01:21 AM) <{POST_SNAPBACK}>
Also, with the blood test we went to a pathology collection place that was big enough to be good at paediatric blood collection, they made it as easy as possible and 3.5yr DD is very proud of her certificate for being brave original.gif


Where we went was great too. Ds also got a bravery certificate. I wonder if they all do it. He was very calm though. Smiled through the whole thing. Dd went a few weeks later and screamed the place down and got rushed out empty handed!

Definitely get the Emla cream.




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