Could my 2.5yo dd have Coeliac Disease?

[thatsnotmymonster]

She is my middle child.

As a baby she used to scream and writhe with abdominal pain.

After she was weaned she suffered from Chronic constipation until we switched her from dairy to soya when she was 2yo. She is still a bit constipated but doesn't scream like she used to.

She couldn't hold anything till she was 8mo and for a long time she would only hold things for seconds because her arms jerked a lot and objects would just fly out.

She didn't roll or crawl.

She bottom shuffled from a year old and walked at 20mths.

She has no muscle tone and is very weak, she also gets quite shaky and cries if she has gone a long time between food. She is usually quite a good eater.

She is very small and is not gaining weight (currently on 2nd centile was on gthe 9th a year ago and 50th when she was born).

She also cries/whines all the time. I know this can be par for the course with toddlers but sometimes I think it's more than that. Sometimes she says she's got a sore tummy but her language is not fantastic although she is really catching up.

What do you think?

[KnickersOnMaHead]

Message withdrawn

[seeker]

What makes you think she might? Is there a family history of coeliac disease?

[meandjoe]

i'd deffinitely get it checked out. the crying whinging might just be her personality combined with a bit of frustration from lack of language but should get better if as you say she is catching up with vocab.

the weakness and low muscle tone would concern me along with the slow weight gain. i wouldn't worry overly but would deffinitely go to gp and tell them your concerns.

good luck xx

[thatsnotmymonster]

Thanks. I don't think she is but I just worry about her due to the combination of symptoms and the fact that she is just not happy a lot. Whereas my other 2 are so different.

[thatsnotmymonster]

seeker- no family history- does there have to be? Would just feel dreadful if she did have it and I hadn't done anything. Would she be really ill if she had it? I read it can be mild.

[seeker]

I only asked because the symptoms you list don't seem to add up to coeliac disease in mt (admittedly pretty limited) experience, and I wondered whether you had other reasons for thinking that might be what it is.

It does sound as if you need to take her to the doctor, though, if only to reassure yourself that it's just one of those things and she'll catch up.

[thatsnotmymonster]

seeker- I don't know much either. I just checked the ceoliac.org website

I just wondered if anyone has a dc with mild coeliac disease what were the first concerns/symptoms?

[thatsnotmymonster]

seeker- thing is I'm pretty sure the gp will just say she's fine. I mean how often do they really listen to your concerns. I think she probably is fine but it does niggle and I don't want to seem a neurotic mother!

The symptoms I thouht she had are abdominal pain and constipation, poor/no weight gain, poor muscle coordination and poor muscle tone.

Some of the symptoms I wouldn't know about- joint pain, vitamin deficency, tingling hands and feet, poor tooth enamel etc

[nightcat]

There is a link between all the symptoms you list & possible gluten cause. The gut symptoms can be very mild and you can still develop neurological problems - my ds did.
When we took him of gluten, I can only call it a miracle.

You can try taking wheat out to see if it makes a difference (we did). We subsequently were seen by a specialist for gene test to see if he had gluten-sensitive gene - which he did. My ds is not celiac, but his symptoms were far more severe than digestion (like your dd's and more).

If the diet works, you would at least have an option to help. If it doesn't - you would know that you tried.

[http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=10381684 link1]

[http://www.acnr.co.uk/pdfs/volume2issue6/v2i6reviewart2.pdf link2]

[thatsnotmymonster]

thanks nightcat, all the sites seem to say not to eliminate gluten until you know for sure but I think that's just so that the tests work IYSWIM?

I might do a trial gluten-free peiod. Is it really hard? Any tips?

She's on soya milk and is not that keen on potato but loves pasta and soup.

[nightcat]

oh dear, the links didn't work, oops!

When I realised that there was a chance of help, I couldn't just sit and wait for tests - I just had to know if it would work. We were talking supposedly incurable neurological problems(inc tremors). From many research papers I found out that severe neurological problems could be irreversible - I really couldn't sit and wait for them to get worse.

Celiac is a tip of gluten-caused iceberg of problems. For children tests are inconclusive and biopsy could be taken from a patch that is not as severely damaged as drs would like to see. Many sensible experts will acknowledge that diet improvement is the only real proof if it works or not.

As for tips: try to minimise carbohydrates as far as you can and if you can't, use non-gluten grains (brown rice, millet, buckwheat). You can get gluten-free veg/rice/milet based pasta, scrambled eggs/fancy omelettes for breakfast. Soups are great, you can whizz up so much good veg/meat in there. The products you get on prescription in themselves would never be enough to provide all healthy nutrients - they are pure carbs - but you will need wholesome veg, protein, vitamins.

If diet does work, you could try and ask drs for a trial of some of these products on prescription (we never bothered as we try to minimise carbs anyway).
Best book I found is this (and below those links again):
[http://www.amazon.co.uk/Gut-Psychology-Syndrome-Depression-Schizophrenia/dp/0954852001/ref?tag=mumsnet&ascsubtag=mnforum-21 =sr11?ie=UTF8&s=books&qid=1232455751&sr=1-1 book]

Best book to understand gluten problems is this:
[http://www.amazon.co.uk/Dangerous-Grains-Gluten-Cereal-Hazardous/dp/1583331298/ref=sr_1_1?ie=UTF8&tag=mumsnet&ascsubtag=mnforum-21 &s=books&qid=1232456303&sr=1-1 book2]

For us, I noticed positive changes within a week. If it works, you could try convince your dr/s to take it on board too.

[http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=10381684 link1]

[http://www.acnr.co.uk/pdfs/volume2issue6/v2i6reviewart2.pdf link2]

[nightcat]

OK HERE ARE LINKS, sorry for the earlier mess
Best book I found is this (and below those links again):
book

Best book to understand gluten problems is this:
book2

Earlier links:

link1

link2

[thatsnotmymonster]

nightcat- sounds like you had a miracle. I know all about gluten related problems as I used to work in a centre that provided a treatment programme for children with neurological disorders and brain injuries etc.

Many of the children were gluten intolerant.

Some autistic children have virtually been 'cured' through eliminating gluten and other dietary measures.

DD's problems are very mild and it's hard to know whether she's just little and a little bit slow to develop or if it's more than that!

[MrsGokWan]

My middle son (3.4) is gluten intolerant.

He gets a rash on his face, his stomach is distend (it balloon's right up.) He doesnot have solid movements and goes several times a day. He has severe exema. He was speech delay and had stunted growth.

As soon as we went gluten free his movements became solid with in 2 days and he is now being potty trained,which was impossible before. His skin has cleared up. His speech is coming on in leaps and bonds. He is growing now. His stomach is now normal.

We cook everything from scratch. Use gf pasta and bread, I have now started making my own bread though, 100% better, tastier and cheaper.

[nightcat]

hey, monster, that's sooo interesting, your work!!
Mrs GW/monster - yes, speech delay, then everyone says, oh, that's because he is a boy, alternatively that s/he is a middle child..
well, if I hadn't seen the improvement with my own eyes, I would probably be sceptical too I think.

Can't bring myself to make bread, so we try to go for other things.

[thatsnotmymonster]

do you think it can cause mild problems like my dd's as well?

Nightcat you can check out where i worked here. It is truly an amazing treatment! I worked there for 5 years and for half of that time I was head of he Clinical team and so I know what I'm talking about! It is my dream to set up something similar in the future along with the other 2 girls I worked with and bring this treatment to more people.

[Joe90]

Before I got to the end of this thread I thought is she autistic as my son went autistic at 15 months and we were told it was a gluten intolerance causing it when he was 4, and I can vouch for the miraculous effects of putting him on a gf diet, but obviously with your experience you would have recognised the signs for autism, interestingly brothers in law had digestive probs as babies 40 odd years ago and were able to be temporarily on a Gf diet for a short while. Our autistic child now 16 is back on a normal diet, only worry is the other 2 who keep having stomach pains! Definately speak to GP the symptoms sound bad enough to refer to a paediatrician, whilst waiting for tests you could cut down gluten to one meal a day, say evening and see if the rest of the day is better, or as you say, sod the test and start excluding gluen now, but keep a food and symptom diary to show the paediatrician starting with symptoms before diet change.

[nightcat]

wow!! didn't know places like that existed!

Now meet our awesome neuro, world-renowned expert on gluten & neurology (published 40+ BMJ/pubmed papers):pic.

Gluten sticks to gut walls like glue if someone can't digest it. Wheat has been modified to increase gluten content over the years which doesn't help.
If it sticks to the gut like glue, it damages the gut walls and causes malabsorption of nutrients (and slow passage through). It might be that limiting wheat could be enough for your dd (and restore absorption), but if left uncorrected, the gut damage can then lead to autoimmune damage in the gut & in other places (inc brain & neuro cells - eg neuropathy, the tingling etc someone mentioned). It can affect musles and tendons (like it did in my ds), but because the symptoms are so distant from gut, it took me years to get to the bottom of it.

Your dd symptoms do fit malabsorption, so give it a go. The problem is that even if you try to give her vitamins, then with wheat, they will not be absorbed either.
For us this approach worked, maybe it will help you too.

[thatsnotmymonster]

Yes, it's amazing- most people do not have a clue. Most people who came to the clinic would end up in tears on their first visit and say they wished someone had told them about us earlier or that they wished the healthcare system would promote places like that more (not easy I know as you have to be careful).

Nightcat- great article. I've read a lot of similar research in The Autism File magazine. Many autistic children have gut malabsorption combined with an inability to get rid of toxins from their system. As Joe90 knows it is sometimes possible to turn things round completely with diet!

[nightcat]

How shocking that this sort of advice is not available from an average dr, isn't it?!

Here is another good article and her book (linked earlier) provides a lot of practical advice

article

[thatsnotmymonster]

Another really interesting article Nightcat and very similar to many I have read. I have read some of Dr Wakefield's research before.

This bit is particularly relevant to me

'This picture leads us to the fact that these conditions are related to
each other by similar underlying causes. Let us discuss what these causes may be.'

At my previous job that I mentioned we treated one of these underlying causes - neurological dysfunction in the form of retained primitive reflexes and absent corresponding 'adult' reflexes. It doesn't make much sense without a full explanation but basically they are key neurological reflexes that are dysfunctional in many children. Once these are corrected through a specific programme of movement patterns the child's development and abilities in many areas can improve. I have seen some amazing progress.

[nightcat]

please tell me more monster!!

My ds "knee-jerk" reflexes are still almost non-existent (so are our osteopath's, so I was not overly worried), was there a specific program for that at BIRD?

I wish this was a bit closer as we are down south.

[thatsnotmymonster]

hi, sorry not been on here since last night!

The best one for you to check is called the Babinski reflex.

If you stroke the sole of his feet from the heel upwards along the outside edge and then across the base of his toes. You should do in a smooth fluid movement using your finger nail. Do his toes splay out and backwards or curl forwards?

Another one that is easy to test is called the Spinal Galant. Ask him to go on all 4s (hands and knees) and lift his head to look straight ahead. Gently stroke the bare skin of his back on each side of his spine- follow the bottom to top- start just above his waist and stroke up to below his shoulder blade quite quickly. Do one side then the other. Look to see whether his hips move towards the side you have stroked.

The knee jerk reflex is different as it is not controlled in the brain as these ones are, it is a nervous system response.

[nightcat]

Interesting, thank you, I will try testing & look into it further.
Good luck with your dd.