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Allergies and intolerances

coeliacs disease

9 replies

simpson · 10/07/2010 11:10

Hi

My DD is 2.5 and is severely intolerant to lactose, soya & oats.

However recently she has developed an intolerance to something else (no idea what ) and is pooing her clothes every day etc

Her dietician (had appt on Monday) has suggested that maybe she has coeliacs diseaseand she needs to be tested for it.

What are the symptoms of coeliacs? (she complains her tummy is sore and presses it on cold surface ie floor or wall all the time)

And how do they test for it?

Thanks

(Have also posted this in childrens health)

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becstarlitsea · 10/07/2010 11:20

I have this, as do my mum, niece, and sister (there's a genetic component).

On the plus side - as long as I stay away from gluten (easy once you're in the way of it) I am perfectly healthy with no symptoms.

On the down side - if I accidentally eat gluten I have lots of symptoms including:
stomach cramps
irritable bowel type symptoms (was wrongly diagnosed with IBS before realised it was coeliac)
nutrient deficiencies (I've had scurvy! Arrrharr me hearty!)
fainting
immune system doesn't work as well after I've had gluten
I get allergic/intolerant to other things if I've had gluten eg I was lactose intolerant, but when gave up gluten stopped being lactose intolerant.

They can do a simple blood test, which is what they did for my mum and my niece, but by then I'd got a positive diagnosis and so had my sister (we had gut biopsies) and the family history plus positive blood test was all that was needed for other family members.

Have a look at this about the tests on the NHS.

These days it's much easier to get gluten-free food that tastes like normal food, and no doubt with her other intolerances you're already used to reading labels. There is an organisation for coeliacs too which people say is good, but I haven't bothered with it - I'm sure someone else will post the link and people do say how good it is.

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simpson · 10/07/2010 11:27

Thanks for that

Will have a look at link now.

Dietician did mention something about a gut biopsy which sent me into state of panic She has refered us back to pead who will do the test.

Unfortunately we don't have any family history for her father because he is adopted. But dietician said coeliacs is much more common in the irish (which he is) Don't know how true that is...

Interesting that other intolerances can develop when gluten has been eaten though....

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becstarlitsea · 10/07/2010 11:51

Yes coeliac is more common amongst irish - also finnish, swedish etc.

I have a (very personal and probably a bit barking) theory that it's because us far-northern europeans have only just (in past few hundred years) started growing and eating a lot of wheat, whereas, for example, the Sumerians were intensively farming seven thousand years ago, and wheat was grown in Africa, southern europe etc. in ancient civilisations and empires (roman, greek, egyptian etc). Meanwhile those of us who are of scandinavian extraction (my family) were still herding reindeer and banging rocks together... In other words, I think my gut isn't very highly evolved! That's just my theory though and isn't very scientific

You might need to keep feeding her gluten before they test her, otherwise you can get a false negative. Ask your doctor on that one.

Hope her tummy ache is better soon, and that you get a helpful diagnosis.

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simpson · 10/07/2010 13:23

Thanks for your help

ATM she is dairy, soya & oats free and I suspect she has a problem with barley too

I am still giving her wheat/gluten atm.

I think she had a blood test for coeliacs when she was under a yr old which came back ok but will have to speak to the pead again.

Unfortunately one of the peads at the hospital thinks DD is fine and its all in my mind...

[angey]

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Danthe4th · 10/07/2010 14:31

If she had a blood test 18 months ago that was ok doesn't mean she is ok now. Definately get her tested again, you may find it takes years for full blown coeliacs to be diagnosed.
I started with intolerances in childhood which didn't become coeliacs until I was 35!! by then I had borderline malnutritian.
We also have a family trait to auto-immune diseases which has only in the last 10 years become obvious.

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simpson · 10/07/2010 15:12

Dan - eeek I don't want that. for you for it to take you to 35 to get diagnosis.

Is a gut biopsy accurate at 2??

Funnily enough my family have history with auto-immune diseases too Never thought that would be a link tbh

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BeenBeta · 10/07/2010 15:47

simpson - I agree with everything everyone has said. It is a complicated and poorly understood condition by most GPs so you are lucky your GP is on side and has suggested this possibility.

Coeliac condition is not an allergy but an autoimmune condition caused by gluten in the diet. Eventualy it can lead to lactose intolerance as well. It has a definite genetic linkage down the generations.

Autoimmune linkage in the family makes total sense. I used to have terrible joint pain, poor skin condition, as well as 'IBS type symptoms' in my guts. I used to feel very weak at times and generally unwell almost all the time frm my early 30s. It got worse as I got older.

The standard test is a blood test and gut biopsy. However, not all coeliacs test positive. I tested negative for coeliac in blood test and gut biopsy. However, after I had had the tests I removed all sources of gluten and also lactose from my diet had a dramatic improving effect on my health about 2 years ago. Some people do test negative but are actually coeliac and a total exclusion diet with a dramatic improvement in symptoms is a sure sign.

I am 47 now, have lost 2 stone in weight and feel the same as when I got married 21 years ago. My friends say I look ten years younger.

The only thing that slightly foxes me about your DD is the soya intolerance as soya does not contain gluten or lactose. I drink soya milk for that reason. The Coeliac Society is a real mine of information.

The only thing I would say is dont remove gluten or lactose from your DDs diet until she has had the tests. Even if tests are negative - try strict exclusion afterwards.

Sainsbury and Holland & Barret have a good range of gluten free and lactose free foods. I cook my own gluten free bread and cakes with Doves Farm gluten free flour. Dont despair, a lot of people hae the condition without realising it.

becstarlitsea - I strongly agree about indigenous diet. My father is a farmer and I am firmly of the opinion that our very high gluten wheat flours have increased the incidence of gluten intolerance in recent years. In fact, I firmly believe that people characterised as 'wheat intolerant' are really just intolerant to modern 'high gluten' wheat. I know that when I was younger and working with my Dad we started growing extreme high gluten wheats. It became the main objective as we were paid much more.

When I used to go to southern Europe I noticed my symptoms declined and am convinced that this is due to the much lower gluten wheat they use to make bread.

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simpson · 10/07/2010 19:28

beenbeta - thanks for your suggestions

DD has been lactose free since she was 8mths old, would I have to introduce that for gut biopsy??

She is not gluten/wheat free atm and tbh I am reluctant to do so without help from dietican or pead as her diet is so restricted anyway

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BeenBeta · 10/07/2010 20:30

Definitley ask your GP. The test is for gluten intolerance so it should be OK to stay as you are withut bringing lactose back in I would think.

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