should i challenge her intolerances before the appointment?

[spod]

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Spod, I don't know about the others, but gluten is a very definite intolerance with very clear symptoms. The normal way of testing is to follow a very strict exclusion diet (with diary) for a period of some weeks, and then reintroduce gluten. The reaction should be immediate. It is a very serious intolerance, you cannot be just mildy intolerant IYSWIM. Some coeliac sufferers (gluten intolerant) are sensitive to potato in some forms. For some reason baked potato seems to be acceptable. Gluten intolerance does not show up on a conventional allergy test. It can be diagnosed with bloods or stomach biopsy. My advice would be to feed her a sensible but restricted diet, and reintroduce one of her problem foods in a controlled manner. For example, if she is sensitive to egg, custard should trigger it: you wouldn't need to feed her scrambled egg. If she really is gluten intolerant, wheat is present in the most enormous range of products, so read labels very carefully.

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I don't know much about gluten intolerance but I didn't think you grew out of it. This website www.coeliac.co.uk/ says you don't grow out of it but that it can be confused with other medical conditions and you need a biopsy for a proper diagnosis. I believe there is ablood test that gives a pretty good indication though.

For party food using xanthum gum allows you to make cakes/ biscuits/ bread that looks and tastes more like conventional cakes. If you have to avoid potato eating out would be really bad, lots of sympathy but no advice, I'm afraid, except to join a support group as other sufferers are the best source of advice.

Spod, you _can't grow out of gluten intolerance but 2 is very young for symptoms to show, so it sounds as though whoever it was was hedging their bets and thinking it was delayed digestive development. If they were doing a proper coeliac screen on her then her gluten-free diet would have had to be halted to undergo the test unless bloods were taken. What symptoms does she show when given potato?

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This is how the coeliac society describe it

"A Coeliac baby would be fit and well until after the introduction of gluten-containing solids. Then the baby would develop typical pale, bulky, offensive-smelling stools, become miserable and lethargic and generally fail to thrive. All the symptoms described can be characteristic of other medical conditions, so people should not jump to conclusions but should seek proper medical advice. "

Also says "The average incidence in the United Kingdom is 1 in 100 people." but many of them don't get diagnosed as babies because the symptoms are not specific.

I don't know what you can do, spod, except avoid foods that seem to make her ill and wait until they are prepared to run more tests on her. Ask them about probiotics, if you haven't already got her on them, as they might help if it as a different type of gut problem. Also make sure she has plenty of liquid to drink as dehydration/ constipation can sometimes cause pain. If she can walk when she has the pain (and I can almost hear the wry laugh at the idea but if she could ...) it may help.

How soon does the pain start - just wondering if it could be a different food causing it.

found this good web page that explains more about the tests and possible alternative problems

www.netdoctor.co.uk/diseases/facts/glutenallergy.htm

is your gp prescribing gluten free foods for you? It would help.

spod, in your shoes, as in the doctor's eyes your dd has no allergies/intolerances, I would feed her gluten and ask them to redo the blood test. I know that would be a complete pain for you and her but it may be the only way to get them to take you seriously (as the gluten antibodies should show up in her blood). I imagine you would need to feed her a full diet for several weeks before you see them.

I know it sounds a bit arse about face but I can't see how else you will get them to take you seriously.

Spod, foxin sox' advice is very good. Also tatt's, coeliac babies as with other sufferers lose weight and fail to thrive, often with very offensive, pale stools, or terrible runs. Your dd's symptoms could be a simple wheat allergy, which causes cramps and wind, but sounds remarkably like the onset of Chrohn's disease which is not an allergy so would not show up on the screening she has had to date. I don't know how young they can develop it, but I have a very close friend who has had it for many years. It is caused by part of the gut failing to absorb food properly. The higher the fibre content, the worse the problem becomes. I believe it is more common in children who may have been fed oats as small babies but I could be wrong about that. There is a helpful society somewhere on the web which should help. Maybe worth considering, that's all. I hope this is of some help to you and her.

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spod, based on our experiences with dd (i.e. not from any medical angle!) an immature gut can have a major impact on their ability to digest food. Dd almost certainly had an immature digestive system - she had other clues as well though - reflux, difficult feeder right from birth. She was milk intolerant (never reacted to any tests - blood or skin) but if she was fed it, she came up in a rash and vomited. By the time she was 2, she had outgrown this. Still today if she has too much, her eczema worsens. Her only confirmed allergy (blood test) was egg.

However, I know how you are feeling. When dd was around 1, she would react to any fish, peas, milk, egg and chicken (rash and vomiting). The GP and specialist thought I was completely mad as the only 'confirmed' allergy was egg (although she did fail her milk challenge) and they insisted I start feeding her the other foods I was excluding. I did - after she had passed her milk challenge at the age of 2 (slowly but surely, one by one and little at a time) and over the course of a year, she could eat everything except for egg.

What I'm trying to say (in my ridiculous round about way!) is that I think it is totally possible for children to react to certain foods but not actually be fully intolerant or allergic to them. It may be that her digestive system still needs to grow a bit but I think 2 is quite a critical age and I seem to remember reading that most milk intolerant babies start to outgrow it at this age.

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I honestly think in your position you will have to try the gluten.

I am going to be tested in January and I'm going to be filling my gut with nasty white bread up until then!

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Spod, may I ask you what test your DD had for intolerances? DS had one that showed a high grade of intolerance to glutten, had the blood test for coeliacs and allergy, which turned out negative.

We also tested for other ingredients and DS came very allergic to egg, milk, fish and above all soya. Now that we are going through a exclussion diet the symptoms I originally blamed on glutten have dissapeared.

I wonder if your DS had an ELISA test (York test?)? did she?

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spod, this is quite an interesting look at the different tests written by a very reputable doctor.

controversial tests

york tests are not available on the nhs because they are not a reliable or proven predictor of allergy/intolerance.

DS had the York test, I had the same questions you have about it, now I know why. I think is good if you use it only as a reference, but it can give you lots of false negatives or positives. DS showed an intolerance to little less than 100 of the 113? ingredients tested, trying to cook a rotational diet with so much constraints has been a nightmare and we were not able to make a balanced diet out of the few food he could have. Now that we are in the exclussion diet (for the allergy ingredients only), most of DS' problems are gone. Sure, there is always something that makes you think there's something there (he also seems intolerant to potatoes, bananas, etc), but we have got to a point that I wonder if it is actually better for him to have some of these things from time to time just not to miss the nutrtional value.

My dog had the York test as well (not that I'm paranoid about allergies, it was actually my vet offering the york test (vet version) for my dog what made me decide to go ahead with the York test (why my DS can't have it while my dog can? sort of thing). Anyways, to cut the story short. DThe dog has very simple repetitive diet so it's easier to check on reactions than DS's so, after receiving the results of YOrk test for allergies and intolerances (for the dog), and noting the dog was NOT allergic and slightly intolerant to Turkey, I gave it a bit... poor dog had such a bad reaction that she couldn't even stand up, she kept vomiting bilis for a week. I still can't understand why the test didn't pick up such severe allergy, and that has made me think whether I have been worrying unnecesarily (or not) for so many things in DS' diets.

Hope this long post could save you some money...

P.S. But all the intolerances that received a score of 4+ on the York test, came back as allergies when he had the RAST test.

How soon after eating does she react? My DS has allergies to a host of things. His reactions are usually the swelling of the lips and tounge and hives. The reaction is instant.

Our Paed does a 'challenge' in a ward over a day. They introduce the suspected allergen slowly over the day and watch for a reaction. If he reacts he returns a year or so later and they repeat the test. Our consultant maintains that this is the 'gold standard' test as the other tests can give false positives and negatives. We follow an exclusion diet between tests.

If your child reacts fairly quickly perhaps they could test on a ward in hosp?

food challenge allergy testing

Eaney, how old is your child. The paediatricain told me last week that they don't do food challenges for under 5s. Wondering if I should ask for one on the next appointment...