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Allergies and intolerances

3 yo suspected coeliac ? no more gluten?

12 replies

mallet · 04/02/2009 15:07

Hi I ahave a 3yo boy born at 29 weeks, reflux, pyloric stenosis ( operated on) cows milk allergy. for the last year i have increasingly concerned with ds2 stomach noises and yellowy sloppy poos ( sorry to be blunt) i took him to doctors last oct and was told "toddler diorreha (sp?) i was not convinced, surely a human body should not constantly make gurgling noises and be so pale ( his torso looks like a road map with just motorways on! I have recently put him on a strict wheat/gluten free diet and within 2 days the noises stopped and his poos were brown and formed. I re introduced wheat and gluten and the symptoms reappeared. i went back to a different doctor and told him all this, he has now referred us to the pead dept to see a consultant in 4 weeks time.

  1. is a biopsy the only test they can do?
  2. if he is coeliac and does eat gluten once in a while how bad is this?

if anyone can help please,
OP posts:
PerArduaAdNauseum · 04/02/2009 16:39

Bumping for you. But I think you've proved yourself that he's wheat or gluten intolerant, whether caused by coeliac or not...

noonki · 04/02/2009 16:49

I would contact the Coeliac UK they answered all my questions brilliantly.

I asked about a test and they apparently only do a bioposy in severe circumstances as it is pretty evasive and uncomfortable.

There is a blood test but it isn't conclusive.

He would have to still be eating gluten before the test as otherwise he could have a false negative.

Coeliac and wheat allergies are different. Coelaic disease is a autoimune condition and can have other implications (such as vitamin deficiency and Osteoparosis)

good luck

LackaDAISYcal · 04/02/2009 16:52

they can do bloods to confirm the presence of gluten antibodies but the biopsy is the only real way of confirming the diagnosis.

it depends how sensitive he is to gluten afaik, but as he is young and if he is coeliac and avoids gluten his gut will more than likely make a full recovery. the problem with eating it, even intermittently is that each time it's ingested it causes gut damage which can take up to 3 months to recover. This gut damage becomes more irreversible over time and the longer the gut is exposed. Aslo, one of the the main problems with coeliac is malabsorption leading to malnutrition and low iron and calcium absorption so repeated exposure can make you very poorly and lead to future problems with osteoporosis. And, coeliac being an outo-immune disorder, means that you are more susceptible to some other illnesses, diabetes and non-hodgkins lymphoma being two of them, so it really is better to have a gluten free regime and to stick to it.

There is more information on their helpline is very good.

mallet · 04/02/2009 22:22

many thanks for your comments perarduanauseum yes the proof is undeniable. I am currently keeping a food diary with poo pictures ( my children think it is hilarious, literally toilet humor!) to prove to the consultant the difference between having wheat and gluten and not.
Noonki thankyou, believe me I would rather avoid the invasive biopsy, I did see on another chat room ( USA dated 2007 ) that gene testing was a new way to test that just invloves a mouth swab, which sounds far better than sedation to me. from what i've read i understand that he needs to be having gluten before he has the tests. i plan to reintroduce next week.
lackadaisycal thankyou for pointing out it takes 3 months to recover each time you eat it, and yes signs of malnutrition he weighed 13kg last october and 12 kg now!
many thanks everyone

OP posts:
glutenfreebabe · 04/02/2009 23:22

I don't think you can confirm it by gene testing but they should be able to do a blood test.

pushkar · 05/02/2009 05:59

i suggest you see a nutritionalisy look up a child fridnly one at bant british association of nutritional therapists, they are inexpensive and can help your child keep on with the g/f c/f diet there are many alternatives in the supermarket

The other thing to try is naet just look up accupuncture and then 23 hre of no gluten and symptons should rapidly improve.
my son has been onn a g/f/c/f diet for 20 months and his asd has almost gone!!

get your child tested for gastroenterolgy a nutirionalist can do this for you,

flamingtoaster · 05/02/2009 17:02

At the moment gene testing is for some of the markers for coeliac disease - but a negative gene test will only tell you your DS does not have the genes they currently test for. There are others so he could still be coeliac even with a negative gene test at this stage. A positive gene test would tell you that he is carrying one of the coeliac genes so might make it more likely that the consultant would agree to "treat as coeliac" at this stage. Given the evidence you are taking with you I suspect your consultant will agree to treat as coeliac given the symptoms your DS has exhibited - especially the failure to thrive.

He does need to be on a full gluten diet for the blood test to be accurate so reintroducing it is a good idea.

mallet · 05/02/2009 18:20

many thanks again to everyone who's posted a reply let's see what happens in 4 weeks time!

OP posts:
pumpkinsoup · 08/02/2009 21:56

if you're still there... can I ask how long he's been off gluten/wheat? I'm worried you may be falling into the same trap we did, by being persuaded to cut out/ reduce gluten before the right time - I know it seems very sensible and like the best thing when you see the difference in your child. But it has caused us, and will cause us many extra problems, and much MORE pain in the long run.

If it has been months, then do as you plan. If it has been days/weeks - get him back on gluten NOW! check out the CUK website, but I think it is 4 portions of wheat a day - eg weetabix, slice of bread etc. A toddlers bowel can recover very quickly, making diagnosis difficult. He will need to be on gluten (as above) for 6 weeks/ (now changing to 3 months) before both the anti-body (blood) test and the biopsy to avoid false negatives IMPORTANT.

Apparently the biopsy isn't very uncomfortable at all, and having it done now, rather than in four years time (like my daughter) will avoid the pain (and embarrassment) resulting from reintroducing gluten after the coeliac body has ceased to produce 'gluten' anti-bodies - the reactions to gluten often get dramatically worse once this has happened.

It sounds like your son has a big problem with wheat/gluten, so it needs to be cut out of his diet ASAP. BUT if it is coeliacs this will be for the rest of his life and he will benefit hugely from knowing his diagnosis for certain. Think reluctant-to-help health professionals and teachers etc, rebellious teenager, laid-back student.

Sorry if this sounds overly dramatic - I just hate to see people following 'common-sense' advice like I did and then paying the price later. BTW, as a nursery nurse I have seen quite a few pale 'road-map' tummies, but all the other symptoms you describe sound very suspect - does he have any behavioural/ emotional issues as well?

loobeylou · 09/02/2009 16:32

OP, I echo what others have said about your DC being on a full gluten diet, before testing. Even though you know it is harming him, it is to his benefit long term. My DD was diagnosed by biopsy aged (just) 5, and I just wanted to reassure you that though it was very frightening at the time, the biopsy is actually very simple and straightforward, DD was only in the room about 10 mins and another 10 mins to come round - we were allowed to be there with her when the anasthetic (sorry, sp!)was given and be waiting for her to come round in the recovery room. The first thing she said was "why has that nurse got 4 eyes?" LOL

lots of great advice on here so ask away!

BTW regarding what happens if he is coelaic and does accidentally or occasionally eat gluten - it varies. Some people cannot even eat one slice of GF toast from a contaminated toaster without being ill for a few days, others cannot bake for their family using normal flour as even inhaling some makes them ill. Others can "cheat" occasionally without obvious ill effects but they are probably doing damage inside even if no bowel etc symptoms - which gives a false sense of security but we have been told it is the repeated dmage and healing that is indicated in bowel cancers in coeliacs.

edinatimea · 14/04/2009 12:34

hi Mallet,
How is your son now?
My daughter is in similar situation. She is 21 months now, was diagnosed with cow s milk protein allergy and reflux at the age of 2 months. Reflux is gone, but milk (perhaps soya allergy is still there). I am a coeliac for almost 30 years, my daughter just started to show symptoms 1 month ago. She was put on gluten free and wheat free diet too. She seems so sensetive even to the gluten free wheat strach, I can not belive it (I am fine with it). She has diarhoerra now and then. How long did it take you to fix your son s digestions? It seems to take ages for us.
How is the milk allergy going? Can he take soya? rice milk? Here reaction to both too.
About the diagnosis, we only had a IgE blood test taken (but she was gluten free for a week already). The test was negative! cant belive is right. We were told to hold off biopsy, and on milk, soya, gluten, wheat free diet for now as she is not even 2 yet. Introduction of soya, then milk will happen first around of age 3, and gluten, wheat will not happen around the age of 3,5-4. Not the happpiest about not to have biopsy done, but because of her age (under 2) dr was not sure if the results would be conclusive.
Hope you still watching this sight, and will answer. All the best

MotherElle · 29/01/2012 10:07

Hi Mallet, I am a coeliac & in answer to your questions:

  1. is a biopsy the only test they can do?

A.Yes, a biopsy is the 'gold standard' test .
It is the typical damage done to the gut as found on the biopsy which shows the patient is a coeliac (villi lining the gut are damaged).
Another biopsy 6 months to a year after the first (when patient has been strictly gluten free) should confirm coeliac disease if the gut has returned to normal & the villi have healed.

It sounds cruel to subject a child to a biopsy like this but you need to know for sure if the child is a coeliac since untreated coeliac disease leads to complications later.

  1. if he is coeliac and does eat gluten once in a while how bad is this?

A. Very bad, the damage to the coeliac's gut can take about 3 months to heal after gluten is eaten so he will not be absorbing nutrients properly in that time & even tiny amounts of accidental gluten can cause great pain and diarrhoea (I know, I've been there) for a day or more.
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