coeliac disease?

[teta]

I have a 4 years old ds who has always had upset tummies and persistent vomiting He also has an enormous distended tummy.We thought he would eventually grow out of it but that hasn't happened.Whats worrying me at the moment is that he eats a lot but has a very small frame and doesn't seem to be growing as fast as his friends.Does anyone here have experience of a similar situation and or lactose intolerance?.I have also posted on the parenting thread as I didn't tealise there was an allergy thread.Many thanks!.

you do know that coeliac disease is gluten intolerance, not lactose intolerance, don't you? Just asking as your post is a little contradictory.

I have a friend who had early coeliac disease who technically grew out of it but not really - I mean, she didn't have the strong reactions to gluten any more but she has all sorts of health issues that could be gluten-related (hormonal and digestive issues) and they do improve if she cuts gluten out.

Lactose intolerance - This is due to a lack of the enzyme lactase - so generally people don't grow out of it, although the reactions may lessen with time. The dairy intolerance that people can grow out of is intolerance to cows' milk protein.

Has your GP agreed to test for coeliacs disease?

Sorry, pressed post too quickly. If there is any chance that it is coeliacs disease, it must be tested for as it can cause malabsorption of nutrients to the point of malnutrition - the villi in the intestines get "flattened" by the immune reaction which drastically reduces the surface area for nutrient absorption. I would get it tested for asap if you have concerns about his growth.

Yes I do.My dh is lactose intolerant and so for a while i thought he was probably that.Now I think that he has some sort of digestive problem as the amount he eats means he should be enormous but he is tiny and [TMI alert] poos about 5 times daily and these are always sloppy!.I havn't had him tested yet as have just been reading-up on the symptoms.I am just posting this to see if anyone else has had a similar problem and can shed some light on this.

I should add thumbwitch that most of my family are medical and hence hate going to the doctors![but not in gastroenterology]

I can understand that! But seriously, if you are concerned about the possibility of coeliacs, either get him tested asap or if you can't face going to the GP, try him on a gluten-free diet. Thing is, if you then decide to get him tested, he'll have to go back on the gluten before being tested so that they get a proper result (although you probably already know that). Also, if he is coeliacs you can get stuff on prescription for him (although there is plenty of choice now and I don't know how much is available on the prescription list)

Sloppy poo 5x a day does rather suggest malabsorption; most of the water is absorbed in the small intestines so if he is affected then the water wouldn't be removed effectively either.

I hope you get answers soon - I'm sure you realise that malabsorption at his age could have longterm effects on his health.

Get coeliacs tested ASAP! It's a horrible thing left alone!

teta - I am a coeliac and gluten intolerance and lactose intolerance go together. It can be passed down the generations as a genetic condition. Most people do not realise they have it for many years (as I didn't).

The sysmptoms sound similar to coeliac but could also be many other things. I strongly suggest you have your DS tested. He does not sound well at all.

Incidentally, intolerance to gluten is not an allergy it is an autoimmune condition. The body attacks its own cells. In this case the part of the bowel just below the stomach. The attack is triggered by gluten proteins in things like wheat but after a while a lactose intolerance also develops.

This wikipedia link is pretty good and uses almost your exact words:

"Coeliac is an autoimmune disorder of the small intestine that occurs in genetically predisposed people of all ages from middle infancy onward. Symptoms include chronic diarrhoea, failure to thrive (in children), and fatigue, but these may be absent, and symptoms in other organ systems have been described."

This link is also a good place to read more.

Beenbeta many thanks for that link .It is incredibly informative and technical.I obviously have no choice but to take him to the gp-much as though I hate it!.Many thanks to everyone else for all the helpful information.

You must and ask for a referral to a paediatric gastroenterologist (or see one privately if you have insurance). Our oldest was diagnosed at two and he was a different child within a week. He was terribly skinny (although growing vertically) pale with a swollen tummy and paleish stools also tummy pains and occasional vomiting. He had some blood tests (anti TTF and anti gliadin I think) and these were strongly sugestive of coeliac disease and it was confirmed by endoscopy and biopsy.

I should clarify 'he was a different child within a week of starting a gluten free diet'

Hi, just came back on to check my thread posted few weeks ago re. coeliac and read this with interest. My DD grew ok although a little small and was originally diagnosed with sucrose and maltose intolerance which is quite rare so we cut out sugar. However, this didn't completely work so went back for another biopsy which showed damage to intestine, then had blood test which confirmed coeliac. Her main symptoms were gassiness, distended tummy, erratic constipation/diarrohea. This was 6 weeks ago and we have cut out gluten but so far still has symptoms. Have been told it may take a while for enzymes that break down sugars to heal, so may not see change just now. Anyway, just confirms that can be a bit of both lactose and coeliac, although is sucrose in our case. Havn't heard about this with anyone else? Would go and ask for blood test and biopsy if you want it definately confirmed.

BTW, we saw a normal paediatrician for about a year who didn't really help, when we saw a gastroenterologist, we started to get some answers so would definately ask for this. No reason why you shouldn;t get it on NHS!

just to post the other side of this dd1 tested negative at blood test (although we have never had the biopsy) but very obviously has either coeliacs or a severe gluten intolerance. supported by the doctor, we still get stuff on prescription, she is a different child completly off gluten and I have never looked back.

DD1 had exactly the same symptoms as you described, and was also tiny with no energy. She was diagnosed with coeliac disease at 2.10, after a blood test and an endoscopy/biopsy. Within 2 weeks of going gluten free she was a changed child.

My DTs had a blood test straight after DD1's diagnosis, but they came back clear, however about 18 months ago DT1 started showing similar symptoms so they were tested again and were both positive. For them, the doctors agreed that, given the family history, they didn't need the biopsy.

From my limited reading, I believe that undiagnosed coeliac disease can lead to lactose intolerance, so there could be a link there, but I am not an expert in this area.

Just to reassure you, going gluten free is very easy now - if your DS is diagnosed, I would highly recommend joining Coeliac UK. They send an annual directory detailing all gluten free foods, both branded and supermarket own brand which is worth the membership fee on its own!!

lactose intolerance could easily be a side-effect of coeliacs disease - as the villi get damaged, production of the brush border enzymes (including lactase, the one for lactose) would be reduced.

Hi this is all very interesting!.I have made an appointment with a gp who has several kids himself in the hope that he will refer me to the right person and have also spoken to family members in the "trade" to find out the best consultant specialising in this area.Just one final question have your dc's diagnosed with coeliac been exceptionally difficult demanding kids-and did they change on the glutenfree diet?.

DD1 was extremely ill by the time she was diagnosed and didn't really have enough energy to be difficult . But I have heard that it is quite a common side effect - I suppose anyone dealing with constant tummy pain, lethargy and frequent diarrhoea and vomiting would be demanding...I'm sure I would be .

also certain nutrient deficiencies can affect mood and behaviour, notably zinc and iron, so restoring full digestive/absorptive capacity will probably improve things.

dd1 was incredibly demanding and hard work, sometimes she has gone again and I check her diet very carefully and realise she has had a tiny bit if gluten, also dd1's behaviour seems to be related to her excema which is quite severe.

Thumbwitch. You do not grow out of coeliac disease. Technically you are correct, as time goes by, you do become more tolerant of the pain/symptoms, but you are still coeliac, and even small amounts of gluten you eat adds to the chances of serious problems when older. (rant over! :-) )
OP. It sounds like your child definately has some kind of digestive problem. You need a referral to a specialist pediatrician. It is very important to do this before you change your child diet in any way, it seems cruel, but if you start experimenting with gf food or cut out dairy, you can reverse any damage already done, making it harder to diagnose.
We were misinformed and put DD on a gf diet straight away. When we got to Great Ormond Street for the referral, we were told to put her back on gluten for 3-6 months. I biscuit had her up all night crying with pain!

Hey, don't pick on me - that's what my friend told me. And as I said, she does still have gluten problems, just chooses not to do anything sensible about them by switching to a gluten-free diet. She decided she had "grown out of it".

Sorry thumbwitch, wasnt picking, just a bit anal about the whole coeliac thing. also am far too opinionated and like to stick my oar in. please ignore me. xx (am jurisfictionoperative, namechanged for the election)

good namechange! (although I hope you go back to previous after cos I like that one too).
I just got a bit het up because of the . after my name - that prize arse, Crystal123 (please tell me that's not you) does that as well and it feels very dictatorial, imo.

Nope, that's not me. I'm also anal about punctuation! Sorry!

Feel am now entering a personal debate!! Anyway, back to question of how difficult, my DD was very difficult as baby as so tired all the time, not so much now!!!! I am quite worried though reading all this, as my DD doesn't sound like this at all. She didn't have all the problems with energy or particularly with weight, mostly just gassiness, sore tummies, etc. And now we are gluten free that hasn't changed much in last 7 or 8 weeks. Should I be worried? Definately not lactose as that showed clear in biopsy but this sucrose thing does seem to be a worry!!! Sorry to go on about it in someone elses thread but anything that relates even mildly to our experience would be so reassuring!!!!

Pevie- I think if you had a gastroscopy and a blood test with a positive for coeliac, your dd is coeliac. Don't know much about anyone elses experiences, but my dd improved fairly soon (a few weeks), but she was very thin/ tired, the only way was up. The symptoms you listed are usual for coeliac, my dd just didn't have many of them. As to weight, my gran was coeliac and she was overweight her whole life. Could it be that dd is allergic to something else as well? Or she may just be reacting slower. Are you sure that you have cut out all gluten? It's quite easy to miss things.