Allergies, grumpiness, hurting tummy and fatigue

[BlueBumedFly]

My DD (5) had to go to the out of hours doc service today as she has had 2 weeks of tonsillitis and now ulcered tonsils. When we walked in he asked what her allergies were before we'd even discussed them. Apparently her lip was a give-away, showing signs of permanently being swollen. Embarrassingly enough I thought it was just always like that ....

She was diagnosed with penicillin allergy at 8 months, eggs at 3 y/o, wheat intolerance and is allergic to atopic anaesthetic. However, I though we were past the eggs and wheat. He was so concerned about a chronic underlying issue that he has referred us to Great Ormond Street Hospital.

Usually she is a bouncy tigger type child, very funny and happy. However in the last month she has been practically morose, sad, struggling with friends etc.

Does anyone else have a link with allergy and mood with their DCs? I just want my happy girl back :(

You mention wheat intolerance but has she ever be tested for coeliac disease? It would explain her symptoms but of course so could many other things. It's good that your GP is referring her, hopefully you will get some answers that way. In order to be tested for coeliac disease she would need to be eating gluten for at least 6 weeks so might be worth discussing this with the GP before the referral.

Yes, she was tested for wheat and it came back ok.

Sorry but I'm not sure you we're talking about the same thing. I'm not talking about being tested for wheat intolerance or wheat allergy but coeliac disease which is an autoimmune disease, not an intolerance or allergy at all. Coeliac disease causes the body to react to gluten found in wheat but also barley and rye. There are specific blood tests for coeliac disease that test for certain antibodies. However, the blood tests are not always accurate and if there is a strong suspicion of coeliac disease but a negative test result then it is sometimes recommended that the person has a biopsy as this is the 'gold standard' for diagnosing coeliac disease.

My DH has coeliac disease. A couple of years before he was diagnosed he suffered a bout of mild depression. Although this was sorted out with some counselling and a few lifestyle changes, we're now sure that this was probably due to his undiagnosed coeliac disease (in retrospect I think he'd had it at least 10 years before diagnosis). When he eats something contaminated he gets really miserable and grumpy. We've found that GP's (well ours particularly) don't really believe in the neurological symptoms, but I can assure you that they exist. Definitely get a test as if he has coeliac and continues to eat gluten, it can damage his insides.

Very true 2madboys, my DD totally lost her sparkle before her diagnosis, it was like the light had gone out in her eyes. It was so lovely to get my girl back once she was gluten free.

Very similar symptoms to my DS before he was diagnosed for coeliac (age 4).

A blood test for coeliac will help. However, if you have already cut wheat out of her diet, she may be having too little gluten for a positive test but enough to do damage (gluten is also in barley and rye - plus it is a cross-contaminant in many items like oats - don't know how careful you have to be with the wheat allergy but coeliacs have to scrupulously avoid cross-contamination).

I would definitely start with a coeliac blood test. Your DD also sounds like she could be anaemic (a frequent side-effect of coeliac) so that should be tested for too.

Oh, just re-read and it looks like you're not cutting wheat out of her diet.

Definitely coeliac test. And don't change her diet at all before the test (blood test and then biopsy if blood test positive) because that will stop the test from being accurate.

Everyone I am so happy to read that I was not going mad. I cut out wheat this weekend, noticed an immediate and I mean a 24 hour change. I went to parents evening today and the teacher said (without any prompting) that she is a changed child. I feel I am among people who really understand here, and like you say, the GP won't have a bar of it!

Freefrommum - you totally put it in a nutshell, 'lost her sparkle' it is so true, I am so happy to finally be seeing my bouncing child back, even if she is half crazy now :)

A question, if she is intolerant and not full coeliac, does that mean total irradiation? Or can she have cake but not pasta/shreddies/bread? How strict are you all if a child is only intol? Thanks.

blue - what makes you think she is not coeliac?

I don't know .... unfounded simple plain hope? :(

It is not so bad being coeliac / having a coeliac child - honestly! Once you've got to grips with it, anyway.

But, if there is a possibility your DD is coeliac, it is really important to get her tested. Undiagnosed coeliacs tend to have all sorts of problems in later life - short stature, infertility, higher chance of some cancers, higher chance of diabetes, pain and discomfort, moodiness. Etc. etc.

Diagnosed coeliacs who follow the gluten-free diet strictly have no more chance of any of those things than anyone else. It is quite a magical transformation.

It is really important to get a proper diagnosis, because
a) Without a proper diagnosis, people tend to 'cheat' their diet
b) With a proper diagnosis you get more support from the health system (dietician appointments, specialist appointments if you need them - we see a paediatrician regularly, prescriptions for some g-f food products)
c) Without a proper diagnosis, you don't get enough support from the wider community (e.g. schools/hospitals etc may not provide g-f meals without a doctor's confirmation).

I think you should ask your GP for a blood test for coeliac in the first instance. It is REALLY REALLY REALLY important that you do not cut gluten/wheat etc. out of your DD's diet at ALL before you have this test. The test checks for antibodies produced by the body in response to gluten. If you haven't eaten enough gluten, you won't produce the antibodies and you'll have a false negative. She needs to be eating plenty of gluten (our dietician says a significant amount in at least two meals a day) for at least 6 weeks before the test. Longer is better.

It really will be much better for your DD if you get this checked out. I am a bit evangelical about it - I have seen how much it has transformed DS1's life. We believe DS2 is coeliac too, but are having more problems getting a confirmed diagnosis (he is very young which complicates the testing).

Great advice from bedhopper. And it really isn't that bad to be diagnosed as coeliac.

Yes, thanks ladies. Dr appt on Friday to push through the Great Ormond Street referral so we can get tested fully. I'll report back how much I had to stamp my feet :)

It's amazing how reluctant doctors can be to test - still regret the fact it took an unnecessary 2 years for DS1 to be diagnosed, if I'd been more clued up I'd have known what tests to push for, but I wasn't.

There is loads of help here if it does turn out to be coeliac. Freefrommum - you have been a big help to me esp in the early post-diagnosis stage!

Ah, thanks bedhopper. Nice to know that I was able to help in some small way