Anyone else confused??

[Dawniep]

My 4 year old daughter has been diagnosed by one consultant at my local hospital with Coeliac disease whereas her Great Ormond St consultants say it is Gluten allergy. Both have seen her biopsy results which show damage from inflamation and blunted villi both upper and lower parts of gut. Her blood tests keep coming back negative when on prolonged exposure to gluten. She still reacts badly to gluten with tummy pain, severe constipation, bad mood swings and, more recently, rash on her botton (which i have been assured is esema by consultant). I am confused and wondered if anyone has had similar experiences nd/or can shed some light in idiots terms.

[Elspeth]

I thought that Coeliac Disease and a gluten allergy were the same thing? Are they not? Seems I am confused too and I have had it for 5 years!

[NorthernSoul]

No, coeliac and gluten allergy are not the same thing. They are two different types of immune process and involve different immune cells and antibodies.

Although they can cause similar GI symptoms, some presentations differ. The eczema, for example, can be exacerbated by gluten allergy but would not be caused by coeliac disease. Anaphylaxis is a symptom of allergy but not coeliac disease.

The flattened villi seen in your daughter's endoscopy are typically seen in coeliac but a variation can occur in allergy called 'eosinophilic gastroenteritis' (which basically means inflammation and damage caused by the eosinophils- the immune cells that play an important role in allergic reactions). Without seeing the biopsy results themselves, it's difficult to know what exactly they meant. However, the fact that her blood tests are repeatedly negative for coeliac means that if she probably doesn't have it. She may have a condition that is considered to be on the 'coeliac spectrum' called 'non-immune gluten sensitivity'. It's easiest to think of it as a less severe form of coeliac mediated by a process that we don't fully understand and have not yet developed a test for.

It may be that your daughter has both: gluten allergy and gluten sensitivity. Or your consultants might simply have tried to explain the whole thing in layman's terms and gotten you even more confused. Ask them to explain what they mean! To be honest, though, the treatment for both conditions is the same so I wouldn't get too bogged down in it all.

As for the rash... Eczema is unusual on the buttocks (also known as one of the extensor surfaces) of a 4 year old, particularly if it's only developed recently. If she does have an allergy then this may be to blame. As she's negative for coeliac-associated antibodies then dermatitis herpetiformis is unlikely but it might be worth asking your consultant if it hasn't improved on a gluten free diet or is becoming very very itchy.

I hope that helps and feel free to message me if I've only confused you even more!

[Dawniep in reply to NorthernSoul]

thanks so much....this makes more sense. certainly will ask again if need to.

[meanioni]

As NorthernSoul said, treatment is the same regardless - i.e. put her on and keep her on a gluten free diet. If consuming gluten damages her villi it will cause problems with the absorption of essential vitamins and minerals and could lead to other problems, such as difficulty digesting lactose. In a young and growing person you don't want to be exposing her to this (aside from all the other unpleasant symptoms).

[Dawniep]

That is fantastic, thankyou all so much. Beginning to get my head around it, especially the part about lactose...her blood test show a mild milk allergy, but up until recently, she has never had a problem with milk...i know this because her gluten free diet has always resolved her symptoms. However, i have had to reduce her milk intake and find dairy free alternatives as milk is starting to give her tummy pain.

She is, and will be kept on a gluten free diet and the rash is going.

Thanks again...it is much clearer now.

[meanioni in reply to Dawniep]

Ah milk problems - I could write a book

OK - Alpro is good, avoid the soyas flavoured with apple juice they taste like pants and kids tend to avoid them. Alpro do small flavoured cartons (Oys) which are gluten and dairy free and contain calcium. Their soya yogurts and deserts are great too.

Watch out for milk in processed foods, though - it is more of a problem than gluten. As well as obvious sources like milk, cream, butter, yogurt, cheese, check out for: whey powder, casein, buttermilk and caramel.

Most margarines contain milk, Vitalite and the Pure range do not and Aldi do a nice, cheap milk free sunflower marg.

Most chocolate has milk in it, there are more choices in the free from sections now.

Beware of gravy - most have gluten and milk in them. Just Bouillion justbouillon.co.uk/ do a nice range of gluten and dairy free gravies.

Most DS foods have milk in them (apart from breads), similarly the new Genius range of pies, etc have milk in them too.

Overall need to watch calcium levels - if you can encourage your child to have an Oy and a soya desert/yogurt a day they will get 60% - 70% of their calcium intake, the rest can be made up from calcium in food. Danger signs that calcium is getting low include leg and other cramps.

If you want any more advice, shout....

[Jacks in reply to meanioni]

The reason we consume 'milky' products past weaning is due to rather effective advertising. In reality, the west has the worst osteoporosis yet consumes vast quantities of milk. 50% of the World have lactose intolerance because we aren't meant to have the stuff.

I once read that rhinos and elephants manage to develop massive bones on a green food diet. Thought provoking stuff..

[meanioni in reply to Jacks]

Indeed. I am astonished that milk had found its way into so many of the products we consume....

Evil stuff.

I am told that humans are naturally cow milk intolerant and that cow milk tolerance evolved as a genetic variation in Scandinavian countries.

Can't shake the memory of having to drink warm milk from a milk bottle as a kiddy in primary school....yuk

[Jacks in reply to meanioni]

Hated this too - it was torture so used to swap it. Margaret Thatcher would have done me a favour then!

[SAMISARO]

Although in a 4-year old child I would recommend using fortified soya milk with added calcium, especially when on an otherwise dairu free diet. Even Aldi now do a similarly priced fortified soya milk.

[FionaGFG Administrator in reply to SAMISARO]

I'd personally recommend avoiding all soya products. They can interfere with hormones.

[Jacks in reply to FionaGFG]

My sentiments echoed - I choose to avoid soy. Its estrogenic effect has been indicated in the feminisation of men . Plus the environmental impact of soy and palm oil production are horrendous.

[meanioni in reply to Jacks]

Feminisation of men... you say this as if it is a bad thing. Just think.... a world where the toilet seat is left down, socks are turned out the right way before being put in the wash and we would do our own ironing

[Jacks in reply to meanioni]

Never thought about it like that - was thinking fertility, "m-oobs" and deforestation of course.

[meanioni in reply to Jacks]

Men being feminised creates deforestation???

Are there armies of camp lumberjacks?

Oh I see what you mean!

[Jacks in reply to meanioni]

Ah you're obviously thinking about male facial hair being affected (apparently so)

;-0 )... and a sketch from Monty Python ...

[SAMISARO]

My daugther now 6 years old, reacted to wheat and gluten with severe symptoms. Even as a 1 week old baby she reacted to the w&g in my breastmilk. We had a constantly screaming baby and nobody knew what was wrong with her. Her skin was very red and covered in spots. When she was 6 weeks old somebody finally advised me to change my diet, as I was breastfeeding and she was possibly reacting to something in my diet. I cut out wheat and gluten, dairy, soya and egg for the first year of her life and continued to breastfeed her. The improvement in her health was incredible. After two weeks on the gf diet her screaming and crying stopped. I was very fortunate to find a paediatrician who took me seriously. We made an informed decision not to let her have a gut biopsy as the challenges with a gluten containing diet at age 1, age 3 and again at age 5 ( each time for three months) resulted in her symptoms re-appearing ( tummy ache, diarrhoea, red spots on her face). We have had several blood tests after each time she was challenged with gluten. They were all negative for the antibodies but she does have one of the genetic markers for coeliac disease, HLA DQ8. This does not prove that she has Coeliac disease, but if she did not have the genetic marker we could be sure that she does not have coeliac disease. Her consultant's statement is that his clinical suspicion to 99% is that she has Coeliac disease. He says that we will have to monitor her as time goes on, but as the effects of eating a gluten containing diet could be very harmful to her if she has CD, is is better to protect her by having her on a completely gluten free diet. She also has GF food on prescription on the basis of her consultant's recommendation. Gut biopsies do not always confirm coeliac disease. I know of people who had more than one biopsy before they got a confirmed diagnosis. In any case as some other members have commented, the effects of untreated Coeliac disease can be very harmful ( i.e infertility later in life) , so it is best to be on the safe side. I have also recently heard of two more cases where people in their seventies have been diagnosed with Coeliac disease. One woman told me that she has always been poorly as a child and adult and had come to accept that this was normal for her. She now is diagnosed but has problems with bad osteoporosis as a result of the damage caused. My daughter now has soya and egg in her diet, but remains on a dairy free diet as she reacts to milk protein and lactose too. I hope this helps.

P.S. if you are using a soya milk alternative choose a fortified one, as your daughter will need extra calcium and Vit.B12 at her age.

[SAMISARO]

I also found out that some rice milk brands are not entirely gluten free, as during the processing the rice grains are polished with barley grains. Rice dream for instance told me that they use this method. Provamel rice milk is gluten free. However the rice milks are now not recommended for children under the age of five. Tony, would you mind mentioning which soya milks are not gluten free? I was not aware of this yet and my daughter likes the alpro brands ( chocolate and strawberry). I contacted Alpro and they said those are gluten free. Thank you.

[FionaGFG Administrator]

Alternatives also include coconut milk or almond milk often fortified with Vit D. Holland and Barret sell them as do most good health food shops. Few supermarkets do yet.

[Dawniep]

Yes, we use oat milk and Kara coconut milk as we know that soya can cause similar reactions to milk...we only use soya yoghurts as she loves them but other milk is substituted by the above mentioned. Samisaro, your experience of your daughters early months sound similar, but my child was bottle fed.(i wasnt able to breast feed). She was a large baby (10lb 9oz) and every time i tried to give her a hungrier feed she reacted with screaming for hours, and this after a real trial and error to get any milk to agree with her. Soya milk made no difference either. Thanks to everyone for their advice and help. Helps to know we are not the only ones tearing our hair out....

[meanioni in reply to Dawniep]

Some almond milks have gluten in them so watch out (got caught out by that recently with a shop bought version).

Love coconut milk but as an adult was warned off that by my doctor as apparently it has very high levels of cholesterol. I went for a blood test having drunk it for a few weeks and my cholesterol levels were over the limit (unusually). Cut it out and it was OK. Your child would probably be OK, but maybe mix and match a bit.

[Jacks in reply to meanioni]

Hell! I'm trying to find alternatives to my usual Lactofree milk which I (mostly) tolerate quite well but because it contains a lot of B12 my last blood test showed my B12 levels were too high.

Could you say which brand? - I've just bought some almond milk. Thanks.

[meanioni in reply to Jacks]

Er can't remember now it was some time ago.

Got caught out by Rice Dream Rice Milk with Hazelnut and Almond recently - this has barley in it and gave me a reaction. Shame as it tasted lovely