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What is the most common symptoms of celiac in a 11 year old

teresagreen profile image
22 Replies

My son has been having pain in his tummy like a sharp stich and has now been getting worse and more painfull his legs give way he feels tired alot of the time he had a blistery itchy rash on his foot that ended up thatvhe had a cut underneath his big toe he has vomited when had a curry ready meal and has had very smelly diarreha for about 5 years the docs have said he has ibs but im not convinced he has had to take 11 tabs a day in pain relief but they didnt work I would be very gratefull of some advice on this if or if anyone else has had sim symptoms please let me know

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teresagreen profile image
teresagreen
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22 Replies
teresagreen profile image
teresagreen

Sorry the sharp pain has only been the past 9 weeks the smelly dirreha the past 5 years

Regalbirdy profile image
Regalbirdy

I think I was a coeliac as a child but it did not get diagnosed until they few months ago, so speaking from personal experience:

I was a skinny kid;

I had concentration issues - a lot of my school reports came back saying "could try harder" and "is a daydreamer" but I could never understand why because I knew I was trying my best (gluten and dairy affects the brain in my case - I get brain fog);

I often got tired;

I was hopeless at School PT- I could never keep up especially with running events;

I was often subject to low-level bullying as a kid due to being quiet and withdrawn.

I had poor dental enamel - part of the malabsorption issues;

I used a ton of air freshener every time I went to the loo (and still got a lot of complaints from the family about the smell) but never had diarrhoea until I was in my mid 20s.

I had a lactose intolerance as a toddler but grew out of it (and now back into it!)

I had a delayed puberty.

Now I know that many of these symptoms do not match with what you have said your son is experiencing but I have shared them here in case any of them also ring any bells with you.

I hope you can find some answers for your son.

teresagreen profile image
teresagreen in reply to Regalbirdy

Thanks yes some of these ring bells he was very active and is in the top sets at school but since having alot of pain his activitys have gone down his teeth havent been what they should for someone who brushes daily and since having so much pain he is quite sleepy and quiet and complaines of feeling weak and joints hurting thank you

MrsJourns profile image
MrsJourns

My eldest son was diagnosed aged 14. We had him tested after his younger brother was diagnosed (he was 2 and had classic symptoms- swollen belly, vomitting, pale loose stools, losing weight, chronic fatigue) and at the time I didn't think his test would come back positive, yet they did. However, although he didn't have the classic symptoms of his younger brother there were signs - he was always tired (we put this down to him being a teenager) and whenever he picked up a bug it would really wipe him out (he would have a terrible chesty cough, would also complain of tummy ache alongside other symptoms and would end up needing 3-4 days off of school). He did start getting tummy pains just before diagnosis. His bloods tests showed he also had a severe vit D deficiency.

Since going GF and having a course of vit D tablets his energy levels have massively increased.

Have you been referred to a paediatric gastro consultant? If you haven't I would recommend pushing for this. Good luck.

teresagreen profile image
teresagreen in reply to MrsJourns

Hi yes I got a paediatric appointment tommoz hopefully they will get to the bottom of it thank you

Chester31 profile image
Chester31

My son is 14. He hasn't been diagnosed yet - waiting for endoscopy appointment. He had numerous symptoms which we only put together recently. He was always tired (as above we put that down to him being a teen), pale, skinny - can't seem to put on weight, chronic mouth ulcers, cracks in the corners of his mouth, poor appetite, stomach ache after eating, going to the toilet 4-5 times a day - smelly diarrhoea and the list goes on........ Things have really improved since going gluten-free, not sure how he's going to cope eating gluten again before his endoscopy though.

teresagreen profile image
teresagreen

Yes my son also gets sores on his mouth and he is also skinny and lost his appetite to what it used to be is it safe to try avoiding gluten free foods before a diagnosis

Chester31 profile image
Chester31

No - you need to keep eating gluten to get diagnosed. We were so fed up and felt like we weren't being taken seriously and so decided to go gluten free. My son has no ulcers at the moment - first time in years and is feeling so much better that it will be difficult to go back to get diagnosed.

teresagreen profile image
teresagreen in reply to Chester31

Glad ur son is feeling a bit better I will leave his diet how it is at the mo then and see what the hospital say but I get what u mean by not being taken seriously I feel the same

Regalbirdy profile image
Regalbirdy

Reading Chester 31 comments reminded me of a another thing to add to my list above. So many family members were always commenting how pale I was.

I don't remember having any stomach pains though, which I think now was one of the reasons why it was never picked up.

I remember battles at home about being called a lazy teenager as well - but to a certain extent it was true! The thing is I knew no different.

Fortunately I consider myself to have a fairly good level of intelligence, so did ok at GCSE's. It was very hard work mentally, emotionally and physically to get decent grades. I cannot help but wonder how much better my results would have been if I had known about the Coeliac issue.

To be in so much pain as well as dealing with the other symptoms must be so hard for your son. Unfortunately he needs to stay on the gluten until all the tests are completed and this can be extremely tough to do. I found it was getting mentally (nevermind physically) hard going between the positive blood test results and the endoscopy towards the end. After the blood test I strongly suspected what was causing the problem but I wasn't allowed to stop eating it. It was kind of like realising that banging your head against a brick wall hurts but been told to keep on doing it - any sensible person would want to stop! Very frustrating!

For me it was definitely worth it in the end. I am one of the luckier ones who have an answer and diagnosis.

Good luck!

teresagreen profile image
teresagreen in reply to Regalbirdy

Hi thanks yes he is finding it hard at the mo hes meant to start his sats tommorow but due to everything going on and havin hospital he is going to do it one to one he has been very emotional which is very unlike him he keeps cryin telling me he wants to be normal just cant wait to get a diagnosis thank you all for your exsperiance they have helped me spot what he also gets that need to b mentioned to the peadiatric

Regalbirdy profile image
Regalbirdy

By the way I've just read the following in the latest edition (Summer 2013) of the Coeliac UK magazine: "There isn't a single test as such for irritable bowel syndrome (IBS). It is diagnosed by ruling out other causes of the symptoms including coeliac disease. So, before being diagnosed with IBS you should be tested for coeliac disease first."

Not sure how much this helps, I hope your GPs were on the ball last time around...

teresagreen profile image
teresagreen in reply to Regalbirdy

Hi thanks he was diagnosed with ibs a few years ago his peaditrtion said today she thinks it might be gluten so I am to try him on a gluten free diet so im going to give it ago hopefully it will work

Regalbirdy profile image
Regalbirdy

Hi Teresa,

it was interesting to read your comments on what the paediatrician said.

Has your son ever had a coeliac blood test? If not it may be worth seeking/considering one of these before he goes gluten-free. It tests for antibodies in the blood, a sign that there is an immune system reaction to gluten going on.

I would also say watch out for other food intolerances - dairy, soya, nuts, nightshades (potatoes tomato etc), yeast, sulphites, egg etc. Sorting out if he reacts to some of these things may be a bit of trial and error over a period of many weeks but may also help him.

Chester31 profile image
Chester31

Good luck! Let us know how your son gets on.

teresagreen profile image
teresagreen

Hi everyone I thought I would let u know how my son is doing hes had celiac blood test done and it come back neg his pediation advised him to try gluten free food he started this on tues and already I have my son back his pains have eased of dramatically he is eating properly again and is looking forward to being normal again thank you all so mch for advice and comments just hope its not a coincidence and I have hopefully got to the bottom of his troubles

Chester31 profile image
Chester31

That's great news - exactly what happened with us. Hope it continues. I think we're in the 4th month now and expecting my son back from an exchange visit to Madrid later today. Don't think he would have been able to go a few months ago - can't believe what a difference it has made.

teresagreen profile image
teresagreen

Yer it is shocking how bad the symptoms were my son is going back to school tommorow after having 2 weeks off so glad I was told to try the gluten free diet and soo glad I posted on here to kbow I wasnt the only one and felt like the gps etc thought I was mad thank you everyone on here that replyed to my post

Regalbirdy profile image
Regalbirdy

I am so glad your son is responding well to his gluten free diet.

Do also remember to monitor him for other food in tolerances (as already suggested above).

Dairy especially can be a source of ongoing brain fog. From what I can understand, it's due to the exomorphin peptide called casomorphin (derived from casein); and how it is broken down and absorbed through the gut. Usually though a lactose intolerance is more common.

It took me five months of being gluten-free before I worked out I had other intolerances - so please monitor your son carefully in the coming weeks and months.

Btw, gluten is another big source of exomorphins which work on the brain and central nervous system. I personally think please are the cause of my Brain Fog.

Very best of luck, I hope you will continue to drop by from time to time.

Chester31 profile image
Chester31

Hope your son is still doing well teresagreen. My son's blood results have not improved despite following a gluten free diet. He has now had an endoscopy and colonoscopy and we have been told that he probably has Crohn's (we are still waiting for biopsy results to confirm diagnosis). We are still on the GF diet for now as it has definitely improved things but it looks like we're heading for a liquid only diet for 6-8 weeks over the summer holiday. Bizarrely I actually felt relieved when we were given the diagnosis even though it's not what we expected. At least we can now do something about it!

bgol01 profile image
bgol01

Hi all, joining this late, my son (13 and a half) is not coeliac (blood test neg) however he has multiple food allergies (gluten/wheat, soya, sesame and nuts) and it is interesting to read the comments about certain breads; we avoid genius because of the nut risk and have warburtons, this is something I intend to monitor closely as he is constantly bloated recently. His consultant suspects an eosinophilc disorder, he has inflammation in his small intestine and stomach, we may also be moving to a liquid diet for 6 weeks, my alternative is to increase his steroid treatment. Thanks for starting this thread teresagreen, I would not have even considered bread as an issue before now! By the way I hope all son's are doing well!!

teresagreen profile image
teresagreen

Hi all chester 31 there is nithing more reliving than getting told a cause of symptoms cause that is then where it all begins to get better my son is still doing pretty well his pain has almost gone completly he is having solid stool which he hasnt had sice he was about 5 he occasonaly feels shaky and sick and occasionnaly having a more looser stool but this is something I will mention at his next hospital appointment tjank you all for ur advice etc it has been very interesting and helfull reading some of the post

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