mouth ulcers and stomach pains

[HenniPenni]

4 episodes since may/june for my 9 year old daughter, have just googled the symptoms and it points to coeliacs (sp), can somebody please tell me the liklihood that this could be true, have scared myself. Please help.

[lulumama]

don't google! see doc and ask for a referral to gastroenterologist or allergist < is that a real word?>

[HenniPenni]

Lulumama, I never normally google, (I am a non practising registered nurse )but something about her symptoms rang a bell so was just trying to ease my mind!!

Will see Gp on Monday, last time he said it was a virus!! Have already got two daughters with allergies, thought this one had got off lightly! Oh well.

[lulumama]

and now you are more worried? hope you get sorted...

[HenniPenni]

am worried, but what will be, will be. thanks for listening.

[lulumama]

no worries....

[HenniPenni]

Quick update: seeen GP, she is to have bllod work done to rule out any inflamatory causes, if these come back within normal limits then to look at dairy/lactose intolerances before looking at other causes. At least he said that she deffo had a problem and didn't fob us off with a viral cause.

[clerkKent]

They are certainly amongst the symptoms of coeliac disease, but could be other things as well. As a first stage of diagnosis, there is a blood test for coeliac disease. GPs can be slow to try the blood test as it is relatively expensive.

It might be worth keeping a food diary to help you spot associations between food and stomach pains.

[HenniPenni]

Thanks CK, We have already started a food diary and started to elimainate dairy from her diet. (have already got one DD with a dairy intolerance although her symptoms are different).

Bless the poor mite, she was in so much discomfort last night that the brufen only just took the edge off it.

[HenniPenni]

Well her blood works came back as normal, her dairy is showing a reaction to both dairy and gluten (have put her back on dairy so that we get a true picture of the reactions before seeing GP again), Just wondering now whether the dairy will be excluded first or the glutn?

[clerkKent]

HP, I am not sure what you meant to say ("blood works came back as normal, her dairy is showing a reaction").

DS's blood test showed no reaction to gluten, however he has just had a genetic blood test. This will show if he has the genes that make it possible for him to have coeliac disease. A negative result will rule it out, but a positive will mean has heas to have a biopsy.

[HenniPenni]

Sorry I'm never very good at explaining myself!!
What I mean is that her blood test came back as normal, i.e FBC,U&E's, amylase, LFT's, and others that I can't remember what they were!.So we know that the pains aren't caused by infection/inflamation. She wasn't tested for any allergies at that point.

We have kept a food and symptom diary which shows that she gets the pains anything from half an hour to 2 hours after eating a meal and is occuring after most meals, as most of our meals contain both dairy and wheat it's difficult to see what is causing the problem.

On two occasions since my OP her pains have lsated all night and she's has been getting neck pains and a sore mouth again.

Hope your DS gets a negative test, does he have any symptoms?

[clerkKent]

Yes, the main symptom is stomach pain. When he gets the pain it can last 1 or 2 days, and is often so bad he has to stay off school (3 or 4 days this term). It seems to coincide with eating a lot of wheat e.g. pasta, bread. DW tries to keep him on a low-gluten diet, but from time to time he has a pizza or cake.

We hope to hear in the next few days.

For your daughter, it is not too important which you exclude first provided you do not exclude the other one at the same time. e.g. 2 weeks dairy free, then 2 weeks gluten and dairy free, then 2 weeks gluten free (re-introducing dairy). She could have problems with both, so the middle 2 weeks would help to identify that.

[HenniPenni]

Thanks CK, can I ask does your son have any analgesia for the pains? DD isn't touched by calpol or neurofen so was going to ask the doc for something else?

[nightcat]

Don't know if you know, but gluten damages the surface of intestines and they then can't handle dairy. After a few months of gluten free diet, there is a good chance that the intestines will be restored enough to handle dairy.

Don't panic, once you see improvement on the diet you will (probably) not want to even take a risk.

Also, I can't see the point of putting a child through the biopsy (which can be inconclusive: the intestines are 6m long and they only take a microscopic sample); many doctors will accept the blood test + diet response as good-enough for staying on the diet, especially if you do a gene test (our paed did).

There is a terrific support on celiac.com, I would not be without it.

[clerkKent]

HP, earlier on in DS's diagnosis there was a suspicion of intestinal migraine and we tried paracetemol, but it had no effect. My brother (also coeliac) says that he had exactly the same stomach cramps as DS.

Nightcat, I have never heard anyone say that a biopsy can be inconclusive. In fact everyone says the opposite - only a biopsy is conclusive.

[nightcat]

Biopsy is only conclusive if positive and only in adults. Our paed wouldn't even consider it in a child. If negative and symptoms persist, the sample may have been taken from the healthy area of the intestines.
There is a very wide area of symptoms relating to gluten, including autoimmune conditions, not just celiac. My son was diagnosed with autoimmune condition related to gluten through a blood test.
Another good reference is "Dangerous Grains" by Braly Hoggan.

[3frenchHenniePennies]

wow, first day without stomache pains for ?how long!!

[lulumama]

is it possible she has crohns disease... that can cause mouth ulcers and pain in the abdomen.....and it can be intermittent..flare up and die down? glad she has had a pain free night..

[lulumama]

• day...sorry!±

[3frenchHenniePennies]

Thanks lulumama, hadn't thought about crohns, we're at the GP tonight with her food/symptom diary, so will mention it.

I googled crohns last night and she seems to have all the right symptoms- even down to feeling hot when it's not IYSWIM. Also ticks the boxes for joint pain too. Will let you know what the docs say. Day two of no pain YIPEE!!

[3frenchHenniePennies]

Well, the Gp tried to fob it off as constipation!!!!! having nursed for 15 years I can tell whether somebody is constipated or not!! But on the plus side he also thought that it may be a wheat/gluten or yeast intolerance.

[hennipenni]

Well, after 6ish weeks on a very strict wheat exclusions diet we decided to give DD bread to see what happened, it resulted in crippling stomach pains , but at least we have definatly found the culprit.
Does anybody think it would be worth trying to get bread on prescription? We have tried various wheat free breads but she can't stand them.

[clerkKent]

It could still be coeliac disease or wheat intolerance. Have you tried barley or rye (which contain gluten)?

I get Juvela Fresh bread on prescription. It is by far the best gf bread I have come across, but it does contain wheat. My brother is coeliac and wheat intolerant, and he cannot eat it. The alternative is perhaps to make your own bread from gf flour (which is also available on prescription), but we have never done that.

[hennipenni]

YAY, progress at last, DD has at last been referred to peads consultant and dietician, not quite what we wanted but it's a start

[mollicat]

Hi there my sister has been diagnosed with U.colitis I remember her saying that her consultant told her Ulcers in the mouth usually mean somethings wrong in the gut.