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to ask for advice from coeliacs/parents of coeliacs

(16 Posts)
drivenfromdistraction Wed 12-Mar-14 11:49:31

Sorry for using AIBU, but not sure that all coeliacs look in the woefully-misnamed allergies topic.

My 6yo DS was diagnosed coeliac 2 years ago, but his antibodies are not yet normal. They are low positive. He was off-the-scale at diagnosis with total villous atrophy, so it was expected that healing would take time, and his levels have dropped considerably since then. However his latest (Xmas) blood results were only marginally lower than the ones 6 months ago, so I am concerned that small amounts of gluten are creeping into his diet somewhere. If anyone can be bothered to read this long post, I would appreciate your advice as to where the problem might lie.

It is possible the last result was a blip (we think that there was an accidental very low-level cross-contamination glutening over Christmas while visiting relatives (he had a tummy ache and pale poo the next day) - tho' not sure that one incident like that would be enough to raise antibody levels?)

We are very strict about the diet. Totally gf at home for everyone so there should be no risk of cross-contamination. No oats, even gf ones. We hardly ever eat out (about once a month, usually Pizza Express and no symptoms after those occasions). At friends' houses he takes his own packed tea usually (the mums are scared of catering for him).

School provide cooked gf lunches. This is obviously a possible source of a problem but I don't want to rush into changing this - he loves the lunches, which are healthy and cooked on site, and hardly anyone else has packed lunches at school so it would be detrimental socially for him to stop. The staff are very careful, have had special training in gf food provision, and liaise with me continually (I provide some gf substitutes like bread, sausages and fishfingers).

He does not have any symptoms (tummy aches etc.) that I can link to times of having school lunches. They did make two mistakes in the very early days (and both times he had severe vomiting/tummy aches within 2-3 hours, which is also what's happened on the (very few) other accidental glutenings we know of outside school - the last one of those was over 9 months ago.

He has occasional tummy aches, which I cannot link to anything specific (usually weekend / holidays so don't seem to be linked to schol lunches, nor to any particular food that I can identify, nor to going out.) His poos also sometimes look pale (he doesn't let me check often so don't know how common this is for him! - they are solid though, not 'frothy' as they used to be pre-diagnosis). I am wondering if Codex wheat starch might be the problem - it is in his prescription bread (Glutafin Select). I have rung up today to ask for his prescription to be changed to the other Glutafin bread that doesn't contain Codex.

I have also rung the paediatrician to ask if we can have another blood test in a couple of months (with no Codex) to see if antibodies have gone down (and therefore the Christmas one was a blip) or whether we are still hovering at the same low-positive level. Should hear back in the next day or two. If we get a blood test soon and it shows no improvement then I think I will have to stop the school lunches and see if that helps.

If anyone has read on this far - and many thanks if you have! - does anyone have anything else to suggest?

canyou Wed 12-Mar-14 12:08:33

sad No real suggestions on what you ask but
It took my Mum months to figure out that some gf products did not suit so yes the bread may be a problem
How strict are the school re butter, sauces (ketchup, mayo etc) cross contamination ie not washing knife board etc between products. This is where Mum finds all her cross contamination occurs. Also if ketchup/ mayo have been changed the stabilisers may make the unsuitable
Hope you get anawers soonthanks

canyou Wed 12-Mar-14 12:11:26

Also a cousin is so sensitive that airborne cross contamination can affect her. ie if I make scones clean down and then make her tea the flour particles in the air can affect her if she has been around and ingested a lot of non gf product cross contamination

Ephedra Wed 12-Mar-14 12:14:09

I would double check with the school about any cross contamination, make sure they are using seperate things when cooking gf foods.

Coeliac UK often lists foods that contain barley malt extract as gf. I react to some cereal that has "gluten free barley malt" listed as an ingredient.

canyou Wed 12-Mar-14 12:23:36

Also if the food id deepfried or on a baking sheet ie chips I can gaurantee as a Chef these are not gf the oil will have dust/ flour particles and someone will have put sausages etc in the fryer and his fish fingers will most likely be put on a platter next to the regular fish fingers.
If he needs to be completely gf packed lunch for a while maybe the only way to go. Also is he swapping food with others? Even fruit can have bread or biscuit crumbs on them if stored together

deakymom Wed 12-Mar-14 12:26:44

i get airborne cross contamination (im not coeliac im on a gluten free diet) if im having a hypersensitive week i cant cook gluten containing foods especially if i use flour just breathing near the dust puts me out!

can you not recheck to see if it is a blip?

changing the bread is a good idea but you have to change one thing and nothing else for awhile to see if it reacts then change another thing etc (im sure im telling you what you already know)

personally i would just do a recheck

TheOnlyPink Wed 12-Mar-14 13:15:45

This is probably a really obvious one and I'm sorry if its ridiculous, but are you buying anything that's made with oat flour? Alot of biscuits are made with it.

Just mentioning because my husband (coeliac) was having very mild symptoms after being symptom free for a long time and turned out to be this.

I have no other real advice, you seem to have come at every angle. Seems school lunches is the big possibility.

TheOnlyPink Wed 12-Mar-14 13:17:36

Sorry, forgot to say, the biscuits I was getting for dh had a gluten free label, I wasn't just picking up anything! We just didn't check the ingredients.

Ijumpalot Wed 12-Mar-14 13:44:07

I had the same findings as your ds when I was diagnosed at 19 and it took a long time to get my symptoms under control-around 4-5 years. I didn't realise it at the time as I was so used to living with the symptoms I had, they felt normal to me. Now I look back and realise they definitely weren't! I can't remember if my anti-body levels were also out but my main advice would be to speak to the paediatrician to see if the levels could just be the body's reaction to having been ill for so long or a definite indication of contamination.

Waltonswatcher1 Wed 12-Mar-14 13:49:39

I just don't know how you can get to the bottom of this unless you stop school dinners for a trial run . That would be my first move - I know this seems harsh as he loves them and it also will increase your work load though .

CMOTDibbler Wed 12-Mar-14 13:56:05

Codex can def be a problem.

Have you checked about any sweets being given out at school? I once had a low level reaction for a while as I hadn't realised a particular brand had changed

drivenfromdistraction Wed 12-Mar-14 14:29:24

Thanks for all your replies. In answer to questions:-

- he knows not to swap food with others and is very sensible about this
- school know not to give him sweets unless checked with me, and he knows not to eat them unless checked with me
- I do check ingredients on everything and don't buy any gf stuff with oat flour. Always possible something could slip through so will re-check stuff in cupboards
- I know about airborne contamination and school know to make his food first, then cover it before making others
- school know not to share oil and to cover baking sheets before use and about double-dipping

I have just looked again at the letter about his blood test results. It said that the EMA test was negative, but the TTG test was weakly positive. I will ask the paediatrician what that means - presumably the TTG test is more sensitive.

I will also ask paed's advice about whether we need to stop school lunches or try one more blood test first.

Thank you all

LaGuardia Wed 12-Mar-14 16:28:12

The NHS website states Coeliac disease isn't an allergy or an intolerance to gluten. So I have no idea where all this 'airborne allergy' nonsense comes from confused

cestlavielife Wed 12-Mar-14 16:31:43

my daughters levels took 18 months to two years to go right down ...she also had a second biopsy just to be sure this was clear and showed healing had occurred.

so long as he better in himself and you ahve noticed vast improvement in ehalth which i would anticiapte then just keep going
keep away from things like barley mal etc obviously

drivenfromdistraction Thu 13-Mar-14 08:33:30

LaGuardia - for coeliacs, gluten is not an issue in the respiratory system (i.e. breathing it in is not a problem). However, if someone uses wheat flour to cook with, there will be airborne particles in the kitchen for 4-6 hours afterwards (there has been a recent study on this). These particles will settle on other food in the kitchen. If a coeliac subsequently eats that food, it is likely to make them ill. I think that's what people mean.

The standard guidelines for caterers is to keep all food covered. Make gluten-free dishes first (so no particles in the air) and then cover those thoroughly before cooking with wheat flour.

fascicle Thu 13-Mar-14 09:15:51

The NHS website states Coeliac disease isn't an allergy or an intolerance to gluten. So I have no idea where all this 'airborne allergy' nonsense comes from confused

You are the only person to use that term on this thread.

OP - definitely a good idea to ask the paediatrician for further explanation/interpretation of results and ask what they would expect to see in relation to previous results.

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