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What Do You Think?

Heartmum2Jamie

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Heartmum2Jamie Newbie
Heartmum2Jamie
Posted

Hi all! I am a British mummy looking for some advice, as I can't seem to find a decent uk celiac site.

I have a son, who is 17 months and has never really been in good health. He was a very ill baby who cried all the time and failed to thrive. He was eventually diagnosed with congenital heart problems at 9 months old and underwent open heart surgery in April this year, at 9.5 months old. He was like a different baby after his surgery. He has always been a little guy, and is currently just above the 2nd centile for height & weight (after dropping off the charts before his op) We were hoping that we could relax somewhat now that he is better, but have recently discoverd that Jamie has some food allergies. Although he has yet to be tested, we know that he is allergic to milk & eggs. He come up with hives and red rashes.

Now he has started to get alot of dirty diapers. He used to average once or twice a day, now it can be anything upto 6 times a day. It's not diarrhoea, but it's not formed either. It can be very smelly, like slightly rotting fish or garbage and sometimes looks like it has half digested food in. It also almost always has mucous in. This has been going on for about 3 weeks. His gp has already tested a stool sample which has come back normal. Jamie doesn't seem to be bloated but sometimes looks like he is rubbing his tummy and I have noticed that he has more wind than normal. He is also more irritable these days, but it is difficult to tell if it is due to teething, or because his BP has risen again after his surgery. I also haven't noticed any obvious weight loss, but can't say for certain as he hasn't been weighed for a while.

So what do you think?? I am trying deperately to get Jamie allergy tested before xmas and was going to ask them to test for intolerances too while I was there.

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Smunkeemom Enthusiast
Smunkeemom
Posted

If you can talk them into testing him for celiac disease I would go that route. It sounds like it, but I am not a doctor, all I have is stories from others and experiences with my 2 girls. If they won't test him (some doctors are weird about it) then I would just try to put him on a restricted diet (gluten free, milk free, egg free) for a while and see if he doesn't feel better. If he is allergic to things, he may be having trouble digesting for a while and I have been reading about how gluten is difficult to digest in normal people.

Jnkmnky Collaborator
Jnkmnky
Posted

Kids that young generally come up negative on the current tests. It's best to try the diet 100%-no cheating or it doesn't show any results.... Kids under the age of 5 aren't testing well with the current tests, so dietary challenge is the route you should go. I recommend the book Dangerous Grains for a better understanding of Gluten grains in the diet. Good luck.

Jnkmnky Collaborator
Jnkmnky
Posted
If you can talk them into testing him for celiac disease I would go that route. It sounds like it, but I am not a doctor, all I have is stories from others and experiences with my 2 girls. If they won't test him (some doctors are weird about it) then I would just try to put him on a restricted diet (gluten free, milk free, egg free) for a while and see if he doesn't feel better. If he is allergic to things, he may be having trouble digesting for a while and I have been reading about how gluten is difficult to digest in normal people.

I don't understand this. Are you in the U.S.? Your doctor works for you. They don't deny you testing. They can talk you out of insisting on one... but that's your decision. You get the tests you want if you're in the U.S. You may have to pay the $300 for it, but no doctor can deny you a test..weird or not.

If the child has celiac disease, his villi may be damaged enough so that lactose is not digesting properly. This is a temporary situation as villi grow back. Takes between 6-9 months on average. Older folks may take longer, but kids are pretty quick.

nikki-uk Enthusiast
nikki-uk
Posted
Hi all! I am a British mummy looking for some advice, as I can't seem to find a decent uk celiac site.

I have a son, who is 17 months and has never really been in good health. He was a very ill baby who cried all the time and failed to thrive. He was eventually diagnosed with congenital heart problems at 9 months old and underwent open heart surgery in April this year, at 9.5 months old. He was like a different baby after his surgery. He has always been a little guy, and is currently just above the 2nd centile for height & weight (after dropping off the charts before his op) We were hoping that we could relax somewhat now that he is better, but have recently discoverd that Jamie has some food allergies. Although he has yet to be tested, we know that he is allergic to milk & eggs. He come up with hives and red rashes.

Now he has started to get alot of dirty diapers. He used to average once or twice a day, now it can be anything upto 6 times a day. It's not diarrhoea, but it's not formed either. It can be very smelly, like slightly rotting fish or garbage and sometimes looks like it has half digested food in. It also almost always has mucous in. This has been going on for about 3 weeks. His gp has already tested a stool sample which has come back normal. Jamie doesn't seem to be bloated but sometimes looks like he is rubbing his tummy and I have noticed that he has more wind than normal. He is also more irritable these days, but it is difficult to tell if it is due to teething, or because his BP has risen again after his surgery. I also haven't noticed any obvious weight loss, but can't say for certain as he hasn't been weighed for a while.

So what do you think?? I am trying deperately to get Jamie allergy tested before xmas and was going to ask them to test for intolerances too while I was there.

Hi Heartmum,

welcome to the board.

I'm in the U.K too.My husband's a coeliac.

My full sympathies for having to see your little one have heart surgery-my middle son has has open heart surgery twice-so I know what a worrying time you've had.

Regarding tests for coeliac,

The general concensus is that blood tests for coeliac disease are unreliable in kids under 2 yrs old.(something to do with them not having enough antibodies I think)

So,have you discussed your concerns with the paediatrician?

At your little ones age I think alot of docs would advise trying a gluten free diet,to see if symptoms improve,-kind of 'suck it and see'.

Of course another method of identifying coeliac is a small bowel biopsy-but I don't know if docs would recommend such a procedure in one so young.

You really need to see a specialist-preferably a paediatric gastroenterologist(wow that's a mouthful)!

Are you private or NHS?

By the way this uk site is very informative and friendly Open Original Shared Link

Hope you find some answers for your little one & good luck

DonnaD Apprentice
DonnaD
Posted
Hi Heartmum,

welcome to the board.

I'm in the U.K too.My husband's a coeliac.

My full sympathies for having to see your little one have heart surgery-my middle son has has open heart surgery twice-so I know what a worrying time you've had.

Regarding tests for coeliac,

The general concensus is that blood tests for coeliac disease are unreliable in kids under 2 yrs old.(something to do with them not having enough antibodies I think)

So,have you discussed your concerns with the paediatrician?

At your little ones age I think alot of docs would advise trying a gluten free diet,to see if symptoms improve,-kind of 'suck it and see'.

Of course another method of identifying coeliac is a small bowel biopsy-but I don't know if docs would recommend such a procedure in one so young.

You really need to see a specialist-preferably a paediatric gastroenterologist(wow that's a mouthful)!

Are you private or NHS?

By the way this uk site is very informative and friendly Open Original Shared Link

Hope you find some answers for your little one & good luck

DonnaD Apprentice
DonnaD
Posted

Hi everyone,

I'm a UK mummy too, I live near Cambridge. My 11yo daughter was dx by repeat biopsy last month. Her initial biopsy was inconclusive. I was told to feed her gluten for 3 weeks before the repeat which due to holidays was actually 6 weeks later. Her bloods were all negative. (I don't know which ones were done or the actual results yet I'm going to to ask for copies

)

I have IBS-C, fibromyalgia, irritable bladder, chronic sleep problems, visual problems, chronic pain, heartburn, teeth grinding, have cold hands and feet that hurt and only feel well on an Atkins type diet!! I have gained 2 1/2 stone over the last 1 1/2 (due to amytriptolyne etc I think) and have a big tummy (better now after going gluten-free more or less) I was dx with a 'spastic colon' at 16. I think I might have night blindness as I turned my car over after being dazzled and can't understand why anyone would drive at night :ph34r: :My knees make a crunchie noise when I go upstairs. I have a very low pain threshhold and recently had surgery and had enough morphine to kill an elephant ;) D I have 1 sister with exactly the same symptoms and one with IBS only. My mother has rheumatoid arthritis. My father had MND and came from a family of overweight short people. My 11yo's Dad has alopecia all over his body but his blood test (only one I think) came back normal, he didn't ask which test was done.

Anyway, my daughter was 7.9lb at birth, 50th centile. OK until 3 months (when she started cereals) and she went down to 3rd centile and stayed there. she is 11 yo and 26 lbs. 130cm tall. She is a head shorter than her classmates. She had terrible asthma cough (same as me) which cleared up in 24 hours when we ran out of her fav chocolate milk on holiday when she was 3. I have since had allergy testng postive for diary and wheat myself. So we are pretty much a milk free, wheat free family. She has heartburn, pain below her belly button, nausea when eating (I assumed she didn't like my cooking!)but I'v always felt the same (as do my entire family) so didn't realise she was suffering so much until we went to our GP re her bladder problems.

She had started having reccurent 'urine/bladder'infections but nothing ever showed on the tests. Our GP thought she may have kidney stones. we have health insurance from my previous job so I asked for a referral and saw a Paed consultant he did an endoscopic exam under GA, found inflamed stomach, covered in pink spots, evidence of a reflux and some damage to the villi-not enough for a conclusive diag with a 'normal diet'. So we had to repeat the biopsy. She has been gluten-free for 3 weeks and all ready I'v had to buy bigger shoes!!! Her attention span has improved but she is having visual probelms at school. I am lucky, I have an organic veg garden and we eat organic meat. I suspect this is why we lasted so long without getting really sick.

So I suppose what I am trying to say is that us Mums know something is wrong with our kids. I am so angry that I have suffered so long and my children have issues also. I'v ordered the Entrolab full test as I really need to KNOW what is going on. I had French apple pie in a moment of weekness lastweek in Toulouse, France and had immediate heartburn and then the lower right sided pain I used to have as a teenager.

Why do we have to struggle so hard for good health?

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