New here - I'm another with foul nappies!!

[JaynieB]

Hi - new here so I'll say Hi all...:thumbsup:

Have read a few posts here and feel quite at home after reading Lou C's post about frequent and foul smelling nappies...

DS who is now 7 months had antibiotics at New Year and since then we haven't had a normal nappy until last week!!!:o although we can't say for sure but I'm wondering if the antibiotics has triggered something - anyone had similar??

Anyway after 6 trips to the Dr and my HV I've finally been advised to switch to Soya milk which we've done. After a short spell of not going to nursery he has totally improved... however he went back to nursery yesterday and he had one yuck nappy yesterday and 2 today, they are 100% sure he's not had anything other than soya milk - so now we're wondering if, as they cook their own food he's also Gluten intollerant - at home I usually use jars so far and was about to switch to making my own but will now stick to jars until I am comfortable about what he can and can't have...

Couple of questions - is there any definate way to tell if it is gluten intollerance?
can any lasting harm be done as he's obviously been exposed to the gluten for quite a long time - since end of January at least! I feel awfull if that is what it is but I had no idea where to start...

Thanks everyone
Jayne

[Lou C]

Hi Jaynie, sometimes antibiotics can kill off the flora in the gut (friendly bacteria) and it can take a while for them to get back to normal levels, this can have quite an effect on digestion, so could well be this.
With regards to the Gluten lots of jars will contain it, unless you specifically buy ones that haven't, certainly any of the pasta based baby jars do
I've just been to my GP today and shes writing to my paediatrician re the possibility of a gluten/wheat problem. I cut it out for a week and we were down to one or maybe 2 nappies a day and they smelled normal. Reintroduced the gluten and back to 4 nappies a day and the smell!!! Also you can tell almost exactly what he's eaten as it doesn't seem to have been digested at all.
They can test for Gluten intolerance/caeliac disease but it's a blood test and a biopsy, which I'm not keen on to be honest, and they have to have gluten in the diet for anything to show up. It can cause problems long term, as in years rather than months.

Tigerlily (another mum on here) has lots of info re the Gluten problems, so I'm sure she'll add to this.

Take care, Lou xx

[matt]

welcome to the site.

as has been said the gluten prob can be diagnosed with a blood test as long as the patient had been eating gluten in the days before. shows up as antibodies then they can do a biopsy of the guts to see if the damage is being caused.

the gluten can be the underlying problem as it means that the gut can't digest the other foods so it causes the dairy and other problems. then if removed sometimes all the other problems go away as the gut returns to normal and digests all the other food properly. so cetainly worth investigating, first stage eliminate yourself see if that makes an improvement then reintroduce and see. then to the doctors while gluten in diet.

godd luck

[rebecca c]

My understanding from allergy consultant at Guys is:

coeliac disease can be tested for.

Gluten intolerence can't. Only way to know is to eliminate then reintroduce by giving 4 normal portions over 2 days. If there is a reaction in 4 days then Bobs your uncle. However if the reaction is just a tummy ache the baby cant tell you this. So bob isnt.

[JaynieB]

Wow what a mine of info here... loads of follow on questions too tho:lol2: !

OK we've cut out dairy for 2 weeks.. and the nappies took about a week to improve, at the same time (and completely by conicidence) we cut out Gluten.

So 2 weeks have passed, he had some pasta on Monday and had 1 yucky nappy.. then as far as I can tell (they don't keep a list of ingredients used for the food) he had just a few mouthfulls of weetabix with Gluten in for breakfast and had a further 2 yucky nappies...

As far as eliminating both dairy and gluten how long do I have to wait before I can start introducing them one at a time to find 'Bob' as Rebecca C says! and do I need to see the DR or my HV before I do any of this - I'm still worried about lasting damage etc...

Thanks again
Jayne

Oh and I've been buying Gluten free jars pruely by conicidence as I was buying dairy free ones anyway - one jar that did have gluten in did give him a yucky nappy - I only linked the two when I looked back over his food diary I've been keeping..

[Lou C]

Hi Jaynie, It's good that you've been keeping a food diary, I think maybe you've done what you need to do to be able to justify mentioning it to your Gp/HV You are probably best asking your GP to refer him to a paediatrician, as I don't think GPs do the testing. Lou xx Any more questions just yell, someone will be able to help.

[JaynieB]

He he Lou - we're having two conversations here - I've just replied to your post on the 'New Here' forum!!:lol2:

Yes def think a trip to the HV tomorrow to get her thoughts and then make an appointment with GP next week perhaps when I've tried the milk / gluten introduction again so I can be sure..

It's great to know I'm not alone in celebrating when he has a normal poo tho!!:lol2: :rolleyes:

Jayne

[Lou C]

Hi Jaynie, just a note about nursery, are the meals cooked on the premises? I would ask them to list everything your little one has, if they are cooked on site then they will normally have a menu plan which they rotate. The cook will probably have some standard recipes that she uses, and I'm quite sure they would be able to provide you with the information if you ask them. This was certainly the case in the nurseries I have worked in. In the "baby room" the parents were provided with a sheet daily which showed when they had slpt what they had eaten and how many wet & dirty nappies, if they don't do this, I can get a sheet for you and e-mail then you can ask them to consider introducing it. This is standard practice at the local authority nurseries here.
Lou x

[JaynieB]

Hi Lou - Yes nursery have been very good, they have a chef on site that does all meals - they have the sheet you talk about which lists everything he's eaten too which has been really usefull tracking down this problem...

I've asked them to go with the jars / packets for now as I know what is in them... once I've worked out what it is he's intollerant to I may ask them to accomdate his intollerances into the menu - they have a section on the application form saying they'll accomodate any food requests wherever possible so I can only ask...

Just glad I'm making progress at the moment!

Jayne

[heatherb]

Hi Jayne, fancy meeting you in here!! We are in a similar situation to yours. Callum was a very sicky baby and has been through loads of different tests, (including barium meal, sweat test, urine and bloods) and we have found nothing yet. I have been on a dairy free diet since November now, and he has got better. However, he only really got a lot better when we cut gluten from his diet. We have had the coeliac test, but because we had already cut gluten out, it came back negative anyway. We are going to have to introduce gluten and have the tests done again - dietician said it would take 2-3 weeks of gluten in the diet to show up a positive result.

He has also had RAST tests for dairy, soya and wheat, but they came back as GRADE 0 negative (only got results last friday), but apparently they are not very reliable either.

I was really interested to read this:
"the gluten can be the underlying problem as it means that the gut can't digest the other foods so it causes the dairy and other problems. then if removed sometimes all the other problems go away as the gut returns to normal and digests all the other food properly. so cetainly worth investigating, first stage eliminate yourself see if that makes an improvement then reintroduce and see. then to the doctors while gluten in diet."

Callum seems to be so much better without the gluten, and I have been able to eat more and more dairy (I'm finding it harder and harder to resist things) and it doesn't seem to be affecting him anymore, whereas before it did. I will be very interested to hear the response when I mention this to the dietician.

I would definitely seek medical advice before you try testing out foods yourself. This is our next route, but Callum is still not even on the weight charts, so we don't want to risk him being very vomity again until he has put some weight on. The paediatrician said they would do controlled testing where they will have us in for a day at a time to test different foods. Next appointment with him isn't till 20 April, seeing dietician on 3 April.

I really hope you get to the bottom of it soon. I know it is hard restricting everything he has, but as you have seen already, it does make a difference. How is his weight?? Callum has been so much happier without the dairy/soya/gluten in his system.

Take care. Love Heather x

[cnc]

however he went back to nursery yesterday and he had one yuck nappy yesterday and 2 today, they are 100% sure he's not had anything other than soya milk - so now we're wondering if, as they cook their own food he's also Gluten intollerant

If they're not keeping a list of the ingredients used then surely they could be feeding him foods that have dairy in it, that they don't realise??
Sorry I don't know much about nurseries etc.... but just from personal experience know that dairy gets everywhere. I live in an environment where all food is cooked by a chef on site, and very few of the meals are safe for me to eat, because of random bits of dairy used.

[Lou C]

Hi Heather, another newie!!!! How old is your little one? Did he have just the blood test or the biopsy done for the Coeliac, apparently the biopsy is the only reliable test, but I have big reservations about putting a young child through that. I think the recommendation is to have gluten in for 6 weeks at least for the coeliac tests.
Seems like there are a few of us in the same boat here!

Take care, Lou xx

[Lou C]

Hi Jaynie, (again!!) Any good nursery should be able to accommodate a special diet without you having to provide jars, and freshly cooked food will be better for him than jars. I would ask them to ensure his meals do not contain any dairy and make sure you provide them with the list of ingredients e.g. Whey powder etc. (the hidden dairy), with regards to the gluten until he is tested you need to keep it in the diet or it won't show up. As you have already have a record of you excluding and reintroducing the gluten that is really as much as you can do without medical advice. Louise x

[heatherb]

Hi Heather, another newie!!!! How old is your little one? Did he have just the blood test or the biopsy done for the Coeliac, apparently the biopsy is the only reliable test, but I have big reservations about putting a young child through that. I think the recommendation is to have gluten in for 6 weeks at least for the coeliac tests.
Seems like there are a few of us in the same boat here!

Take care, Lou xx

Thanks for your reply, Lou.

He is 10 months old. Sickness started almost from birth. We gave up dairy at around the same time as we started weaning him, so although the sickness slowed because there was no dairy, there was now the introduction of gluten/wheat - shreddies, breadsticks, toast and porridge seemed to make him more sick.

They haven't mentioned a biopsy, and I am of the same opinion that I wouldn't want to put my baby through that at such a young age.

We are in the process of trying to get him to take Neocate, mixed with rice milk at the moment, but not having much success. I still breastfeed him first thing and last thing, and once in the day, but trying to cut out one of the feeds and put him on a the other milk but he's really not keen.

Heather x

[matt]

the thing to remember is that you aren't going to do any serious long term damage by reitnroducing foods that they are intolerant to. short term illness but apart from weight loss nothing unless they are allergic and have serious reaction but that doesn't seem to be the case here.

how long before you reintroduce? when the symtoms have gone otherwise you don't know if the reaction is due to the reintroduced food.

keep food diary and then present the gp with fait accompli evidence to put infront of them, so that they have to deal with it sooner rather than later and can't write you off as a crank panicy mother.

and if the gp is no good then change....

good luck and let us know how things go

[JaynieB]

Hi everyone... thanks for all the replies...

HeatherB - well, how do we keep 'bumping' into each other!! I hadn't realised tho that you were still having problems with Callum as I havenm't seen you about for a while at the other place but it has gone down hill a bit recently so I'm thinking of 'defecting' elsewhere too! Thomas hasn't been particularaly unwell with any of this - the nappies were horrendous and frequent and apart from being fed up because of a sore bottom he was his usualy self - his weight gain hadn't been affected - he was on the 25 percetile at birth and is still on it - he's deviated a little once of twice but always ended up back on it - which is why I never cosidered an intollerance - if it is then it must only be mild... hope you can make some prgress with Callum, must be very draining when this goes on without end for a long time.

Lou C - they are very carefull at Nursery about the food, another little boy in Thomas's room has a milk allergy and so the cook is very carefull with the food and makes soya milk puddings seperate for them etc.. I haven't actaully asked for a list of ingerdients tho so I may do that if this continues... it is possible he has a bit of a tummy bug at the moment - it's so hard to rule this out when he's going to nursery as they are exposed to so many bugs - a down side to nursery I know but in our case it's necessary... I'll see how he goes over th next week or so. I'm off to see the HV this morning to get her input too and see if I can get the milk on prescription as at £9 a tub I it's extortionate!

Matt - thanks for that reassurance on long temr damage, I worry that all this loose nappy business can't be doing his gut any good, but as he wasn't loosing weight I suppose that is a good sign. I am doing the food diary now thanks and when he's ok I'll try the gluten and then the dairy and see if any reactions... The last GP I saw was actually a trainee GP I think - Nurse Technician I think was her title and she was the most 'interested' Dr I've seen!! so think I'll ask for her again next time, all the others told me it must just be a bug - what for 3 months????? One just told me to switch from a dairy based cow and gate to a dairy based SMA! mmm that'll make a big difference since they're almost identical!

Thanks everyone!
Jayne

[tigerlily]

:) Sounds to me like possible Gluten Intolerance or Coeliac Disease. The earliest they normally do blood tests is age 2. An endoscopy/biopsy will only be done if the tests are inconclusive or false-negative.

Matt: you have to have eaten GLUTEN for 6-8 weeks at least NOT JUST DAYS -otherwise they won't even consider doing blood tests.
Also, C.D. can cause longterm damage to the tongue and intestines -even cancer of the tongue or intestines. So I would err on the side of caution until either gluten intolerance or C.D. has been ruled out, or confirmed.

A smelly nappy after the consumption of pasta or Weetabix sounds a lot like Gluten is the culprit!!!
Eden is now at the end of 8 weeks of GLUTEN in her diet and is vomiting. She'll finally have the blood tests done on Monday!!! Hooray!

If your child is younger than age 2 and shows symptoms of gluten intolerance/C.D.,you can - with the advice of a dietitian ONLY, PLEASE -omit gluten from the diet.

Heather: the RAST is known to possibly show a false-negative in children under 2. We experienced the very same. I'm not keen on the RAST.

Any more questions on Gluten, please feel free to email me.

Vanessa.

[tigerlily]

P.S. Most GPs know next to nothing regarding Gluten -you have to ask for a referral to see a paediatric specialist.

Nurseries and food allergies -tricky one! That's why Eden is with a childminder (only 2x a week)and I supply ALL OF HER FOOD!!! Better to be safe!


Vanessa.

[tigerlily]

I thought I'd add a list of the classical symptoms, just in case. Contrary to popular belief, "failure to thrive" does not have to be one of the symptoms.

The list is long:

Diarrhea (foul-smelling)
Passing of unformed stools
Projectile Vomiting
Distended Abdomen
Irritability
Fatigue
Severe Flatulence
Bleeding from the Colon
Listlessness
Lack of desire to eat
Low levels of Calcium/B12/Folic Acid
Anaemia
Extreme Separation Anxiety
Stomach Cramps/Bloating
Weight Loss
(not necessarily in this order!).
---------------------------------------------------------------------
If left untreated, C.D. can cause the following:

Osteoporosis
Weight Loss
Bone Pain
Epilepsy
Internal Haemorrhaging
Nervous System Disorders
Cancer
Pancreatic Disorders
Chronic Diarrhea
Anaemia
Infertitlity
Lack of Dental Enamel forming
ADHD/ADD
Lactose Intolerance... and others.
------------------------------------------------------------------
It is worth checking whether the parents have C.D./Gluten Intolerance, too, as C.D. is usually inherited. I, for example, am also being tested on Monday. I've had symptoms for years but always put them down to something else.
Some people may have milder symptoms or even no symptoms at all but if you have C.D. there is still damage being done internally.

The main difference between GLUTEN INTOLERANCE and COELIAC DISEASE is that only C.D. will cause longterm damage. G.T. will give the sufferer persistent symptoms, such as diarrhea, but there won't longterm damage.

It is very common for people with G.I. or C.D. to also be Lactose Intolerant or have a Dairy Intolerance/Allergy as the body sees dairy as "intruders"- the same way it does with gluten!

Vanessa.

[rebecca c]

That is really helpful Vanessa. I have had the coeliac bloodtest at Guys allergy clinic and they said nothing about eating gluten before the test. I am seeing the gastroentorologist there in the summer so it will be interesting to see what they say. I definitely have problems with gluten and dairy.

I would be loathe to put myself through the biopsy when I know eating gluten makes me ill - let alone a little one. I think the doctors would often like me to make myself ill to prove a point to them when I already know what the situation (in most cases intolerence or immune reaction) is. I have pointed this out to them.

[Freya's Mummy]

Don't know if this heps or hinders, but my niece had many of the coeliac symptons but the tests always came back negative. Age six they were referred to a different consultant who did strict elimination diet .. turned out the problem was yeast.

[Freya's Mummy]

Sorry ... me again. Regarding nursery ... it took us ages to choose a nursery as many said they 'should' be able to cope with Freya's allergies/intolerances but only found one that said they definitely could. Freya has 1-2-1 supervision at mealtimes so she doesn't help herself from other plates, she has her place setting wiped before the others to prevent contamination, they have signs up in the kitchen incase someone is covering the cook, her meal is plated first if they are also preparing meals with dairy or egg, etc etc. We have had one accident and one 'unexplained' reaction but their attention to detail is great. I think the attention to detail really matters. Also ... all F's class now do baking with products she can eat and they even made her an egg free and dairy free b'day cake this year! I'm not on commission ... just wanted to give a +ve nursery experience.

[Lou C]

Hi Freyas Mummy, that's wonderful to hear, as a childcare professional who has worked in some very good nurseries for several years it's really nice to hear a parent give such a positive account. There really are some great nurseries out there, and it sounds like you have found one!! Lou xx

[cnc]

Don't know if this heps or hinders, but my niece had many of the coeliac symptons but the tests always came back negative. Age six they were referred to a different consultant who did strict elimination diet .. turned out the problem was yeast.

I think Freya's Mummy makes a very good point. Just because the kids are showing similar symptons, it doesn't mean they're all suffering from the same problem. I know wheat is one of the most common, but that doesn't mean it is that. I think it's important to consider everything your child eats- Keep a food diary, and you may notice something else that is being eaten regularly that could cause a problem.
I think my point is- don't get wrapped up in convincing yourself its gluten/wheat, list everything they eat now, and then if you end up doing an elimination diet, things will be easier.

[tigerlily]

Good point. I would do elimination first anyway (we have!). Blood tests could confirm any suspicions. I know several people who have problems with yeast or Candida and the problems are similar. Mind you, many of them can't have gluten either!
However, since Coeliac Disease can cause such serious damage, tests should always be considered, even if it's simply to rule it out.

Vanessa.

[cnc]

Its quite a common test to have- I had it recently when they were checking me for all sorts of things, as it can cause fatigue.
Just don't get convinced that they have a certain problem, as you'll only panic if it doesn't make a difference and you had all your hopes pinned on it. Good luck all!!

[JaynieB]

Thanks CNC - a bit of perspective on it for me - I've 'chilled' a bit after my intial 'dive straight in' reaction! I think DS may have a tummy upset or a mild version of this D&V bug that everyone seems to have as he's off his food completely..

Spoke with my HV who was mortified I'd been told to put DS on Soya milk and said as soon as his tummy is better I should switch him to SMA LF lactose free milk to start with. Makes sense I suppose - she said the Soya milk wasn't enough for him and to add weight to her point DS hasn't put on an ounce in the two weeks he's been on the Soya but had been fine up to that point even with the foul nappies!! - great don't I feel like the bad mummy :(

Anyways - we'll be back to eating gluten for now once his tummy is ok again unless he has a bad do again and will try the LF milk first and take it from there - anyone else use this and get it on prespcription? - at £5 for a 400g tin it's bloomin expensive! but she did advise me just as a few of you did on here that providing he's OK with the LF milk to give it a week and then try him with regular milk to get him back the usual stuff as soon as possible if he's going to go back and not hold off.

Jayne
- I'm building quite a formula tin collection in the cupboard under the stairs - cow and gate premium, sma gold (2 tins!), infasoy, wysoy, sma lf - :rolleyes: I'm only short an Aptimal and farleys and I'll have the full range!!!!!

[JaynieB]

FreyasMummy - glad you've found such a good Nursery - I'm sure DD's and DS's would be acomodating too - apparently the cook was most insistant that Thomas have his special Soya pudding and was quite put out when Thomas's keyworker told him that I'd supplied a soya yoghurt! :)) needless to say Thomas ate ALL the pudding and the yoghurt came home with us!

Jayne

[Pam]

Jayne - soya formula is as nutritionally complete as any other formula, it is the soya milk that comes in cartons from supermarkets and health food shops that you shouldn't give to babies as it isn't enough for them. I think I would use up one of the tins of soya formula that you have and then try a couple of bottles of normal milk formula to see if there is any reaction, or maybe try the LF version before going for the full strength stuff. If necessary you can then go back and use the other soya formula.

If all this has been due to the D&V bug then Thomas may well be able to take normal milk without problems once he has had chance to heal. However, if there is still a problem you may find that reintroduction causes a worse reaction than before.

If after reintroducing milk there is still a problem ask your doctor to prescribe a hypoallergenic formula, that way you are cutting down the risk of developing a soya intolerance too.

[Copper]

A dose of D&V can cause lactose intolerance BUT this is only a temporary problem. After a couple of weeks or so the intestines should have healed and recovered, which means the enzyme lactase is produced again. Lactase breaks down the lactose into smaller parts (molecules to be scientific) which can then be absorbed by the intestine.

There is hope for your son. Pam's advice is very good :)

[JaynieB]

Thanks everyone for your advice - I'm feeling much more positive after my inital panic!!:rolleyes: :lol2: :lol2:

I'll update you when / if I think we're getting somewhere! I've started him on the SMA LF for a starter and providing we are OK I'll give it a week or so and then try the regular stuff.

Pam, when I read your reply I started to wonder if the HV misundestood me (or maybe me being vague again!) and thought I meant the cartons of milk - can't rememebr whether I said Soya Formula - have a sinking feeling I didn't might just have said Soya Milk:rolleyes: I never even gave that stuff I thought.... anyway the SMA LF shouldn't make any difference - and maybe he'll like the taste better and drink it!!

Jayne

[Pam]

I've just had a mega rant about your HV on the infertility thread. Sorry!

[JaynieB]

LOL Pam, don't worry about it - no skin off my nose!! I do feel a bit like a rubber ball at the mo - try this, no try this, no no try this.. and I don't mean here - I mean from my GP (all 4 of them recomended different things!!) and now my HV!!!:confused:

DS has definatley got a tummy bug and poor DD has now started with it.. looks like I won't be working this week:rolleyes:

So my plan is that once he starts to get better to get an apointment and get this SMA LF or pepti on prescription short term..

Jayne

[Pam]

Good luck, I hope the bugs clear up quickly and you don't get it yourself.

[JaynieB]

Pam - had a bit of a think last night after I'd posted.. and couldn't understand why I didin't remember if I said Soya Milk or Soya Formula and suddenly realised why not - because I called it Wysoy so she did know I meant formula and she definatley said it, quote - 'has nothing in it for him'!! I know I had heard of issues with hormones in it which is why I was happy to switch away so didn't really question her comments.. but it just shows how different the advice can be between so called 'health professionals'.

Thanks for the 'wishes' but DD has started with it this morning:rolleyes: oh well I suppose it confirms it's definatley a big anyway!

Jayne

[Pam]

Print out the stuff from the SMA website to show her - some of these so-called professionals are nothing short of dangerous! There is an awful lot of ignorance out there, even amongst doctors and other health professionals.