So, does she have gluten allergy?

[spod]

well...to cut a long story short, have suspected for some time that dd is gluten intolerant (symptoms being bloating, severe wind, or difficulty passing wind more acurately). She's been gluten free since October. She is now 15 months and her wind problems stared shortly after weaning, at around 8 months. Every night, she wakes screaming in pain, and has done since 8 months old. These days she is far better than she was, but still has some trouble with wind, and does have episodes of it being a real problem. dd's test results were negative for gluten antibodies... so consultant says she dont have celiac... but since the tests she has accidently had gluten a couple of times (in wheat) and has reacted badly (wind, bloating, pain) every time. Saw consultant again today and he says she dont have celiac cos she is healthy and thriving and all blood levels are normal etc... but they still cannt tell me why she has such painful wind at night or why she is reacting to gluten. They also said that there were no other tests that they could do to test for allergy. Is this true? They did say that they could do a biopsy (to retest for celiac disease), but as this involved feeding her gluten for a time and involved a general aneasthetic, I have said no. What can I do... she is obviously reacting to gluten and I need to know why? and then perhaps I can help her with the wind... She has been prescribed gaviscon, but I'm not holding my breath. Any ideas?

[alison222]

Is it just wheat?
DOes she also react to Oats, barley, and rye?
My dad is coeliac and reacts to all of them.
He was diagnosed at 28 though and was pretty ill by the time they did the biopsy.
It is possible that it my just be wheat and not the gluten if this is so. - Not that this helps but if it is the case may help the restricted diet

[ChicPea]

Spod, could you try DD on oats for two days leave it for four days and then try her on rye bread and see how she is? Was she on a gluten diet when she was blood tested? I presume she was as you would have been advised by the Consultant as to what to do. If the tests are correct, it could be that she has a gluten sensitivity (if she reacts to rye and oats) and therefore you may wish to keep her off of the above so that she doesn't have the painful symptoms you describe.

[spod]

she does react to oats and rye, all gluten... and she was gluten free for a few months before the tests

[ChicPea]

To get a proper results to the tests, the patient mut be on a gluten diet!! I think a solid two weeks is enough to get the antibodies going. Did you see somebody privately or on the NHS? Whatever it is, it's not right. Have you read up on coeliac disease and how difficult it is to diegest gluten ordinarily. It is a very sticky substance and whether somebody is allergic or intolerant or sensitive it makes eating and digestion difficult. Could you get a second opinion?

[bubbaloo]

i would definately get a 2nd opinion on this.i have food intollerances to gluten(gliadin),wheat,yeast,cows milk(slightly),ginger and cola nut and find i get similar symptons to what your describing when i "overdose" on these foods.i also get a very bad tummy upset and im confined to the loo for most of the morning.
i had loads of tests on the nhs and they told me it was just IBS but i paid and had a private test with yorktest laboratories who found the offending foods and i couldnt recommend them enough-it was the best money i have ever spent,well worth it
i dont know whether they would test babies/children but i dont see why not as all they do is send you a kit in the post,you prick your finger with the stuff they provide and post it back to them for the results in about a week.you could try phoning them to ask as they are really helpful.if anyone wants to CAT me i can give you their details.
at the moment im really happy as im 5 months pg,very constipated and eating loads of wheat based foods and really enjoying them which is a real novelty for me
hope this helps!

[spod]

I'm so fed up! i dont mind dd being gluten free (of me, as i'm still bf'ing and even through me, the gluten upsets her) but I kept asking the consultant if there were any other tests to see if she is gluten insensitive and he kept saying no. They seem to be concentrating on celiac deisease, which, okay she may not have but she does def have a gluten problem, and I feel we should know more definately. All they have said is to keep her gluten free for another 12 months (she will then be 2.5yrs) and see how she goes. But, because she is obviously otherwise healthy (at the top end of all the growth charts) it feels like they just dont want to know. Would skin prick tests tell us anything? They keep mentionning having a biopsy to definately rule out celiac, but i am not keen, as a) would have to feed her gluten (its just too awful to contemplate) and b) shed have to have a general (i can't do that to her) here must be another way. Thing is, from what I've researched about celiac disease, people exhibit poor health symptoms like weight loss and anemia because the intestine has become damaged and thus can't absorb nutrients. but, she only had gluten for a few months before we cut it out, so perhaps the damage wasnt done and therefore she continues to thrive whilst being gluten free. I feel very lost... difficult to get a second opinion as we're in a small town and very few peads here.

[bubbaloo]

spod,
i had the skin prick test with yorktest and i know for a fact they were spot on because as soon as i eliminated the foods they said from my diet,i felt better.
i thought i might have had coeliac disease at the beginning and went to my gp who told me that normally you lose a fair amount of weight with that and according to him it isnt very common.dont know how true this is though but i definately havent lost any weight-fat chance of that
you could also try contacting the coeliac society as they might be able to point you in the right direction

[foxinsocks]

spod, I think (and I'm no medical expert but my dd has been for allergy testing) that when they test (the blood test) for gluten they look for 2 types of antibodies - 1 which would be there had they eaten gluten and reacted (so probably wouldn't have been there for dd) and another which is there in coeliacs whether they have had gluten or not. From what I remember though, these tests are still fairly new and I think there may be a small proportion of coeliacs that aren't picked up.

I know that the only definitive test is the biopsy.

If I was in your shoes, I would follow the gluten free diet for another year and then take it from there (as the paed said). We did this with milk and egg (she tested positive for egg in her blood but not milk even though she was reacting to it at the time) and we found that after a year, she was fine with milk but still isn't with egg (age 4). I know a gluten free diet is more restrictive but if you believe it is best for her, then I would do as they say.

Other than the biopsy, I can't see what else you can do and I wouldn't be keen on that either.

[spod]

thanks for your help... I will def stick with gluten free diet... i just wondered if there was a way to be more definate... would just like to know what causes her all the pain.

[alison222]

From what I remember my dad telling me about it, yes there is damage initally to the intestine when your are eating a gluten diet if you are coeliac, but after a time on the diet it grows back and recovers. The main damage is to the villae - tiny hair like structures through which nutrients are absorbed - fat in particular so this is why in adults one of the main symtoms is huge weight loss.