Coeliac - just diagonosed - still reeling

[Friendlypizzaeater]

My just 7 yr DS has had chronic diahorrea for over 2 years now, he is currently on 3 adult imodium a day and it just about keeps him in check. (1-2 accidents a week as opposed to 7-8 a day)

He had a biospy/blood test 1st Sept and we've come home today to find a message on answerphone telling us he tested positive in bowel and blood for coeliac disease and would be in touch shortly - wtf !!!!!

Luckily I do cook 90% of our meals from scratch so know its just a huge learning curve for me but hes also allergic to eggs/seafood so could be a rough ride - most of the GF biccies seem to have eggs in

I'm so sorry to hear this. The good side is (despite the ruddy pain of the cooking) that once he's on the diet he should be totally ok.

My DH is coeliac (diagnosed aged 40!) and since developed an egg allergy. We are also vegetarian!!!!

Since then, DS2 has been diagnosed with type 1 diabetes, linked to coeliac genetically. DS2 is the least problem to cater for!

You will sort this, honest. It becomes a way of life. Friends support you or you just get good at sending things with your child.

Give yourself a hug, allow yourself to feel sad and then, chin up. xx

Big hugs! It will be more difficult but, on the plus side, you will be able to help DS manage his condition and his tummy should settle down.

Hopefully, somebody will come along with recipe suggestions. I think my MIL uses cornstarch or corn flour instead of normal flour for making something a bit like shortbread (corn is OK, no? It's just wheat, oats, rye, barley?).

Good luck and maybe ask for a referral to a nutritionist/dietician. Is there a British coeliac society?

Ah! Coeliacs and egg allergy IS going to be a right tit, there's no doubt about that.

BUT he will GET WELL and while it might be a steep learning curve, it won't be long before you are used to the new way of doing things - you might even find that you all feel better for cutting down on gluten-y things.

Chin up, this is GOOD news really, not awful news.

I would check the egg allergy is DEFINITELY DEFINITE if you haven't already.

The egg is def def - hes had that since 9 months old, I did ask at the hospital to retest this at the same time to make sure of this as I think he is outgrowing it (when hes had a little it just seems to give him exema on his earlobe )

Joined the Coeliac UK website. How long is referral to dietician normally ?

Luckily have a great village doc/pharmacy so off there in the morning to talk to pharmacist

DH is type 1 diabetic so used to cooking SF

Just feel like getting drunk, got a horrid chest infection and feel crap

I would look here at the Coeliac Society pages for help.

Depending on the severity of your DS's coeliac disease, he might be able to tolerate oats as the gluten is significantly ddifferent from that in wheat, barley and rye - but to start with it's probably best to keep him free from all gluten until his gut has had a chance to heal. When it heals, he may well recover from his egg allergy (but he might not).

look at this page for some recipes and some companies who do gluten free, egg free foods. Orgran are very good - they do some good pasta alternatives. My favourites are the rice & millet and the rice & vegetable ones.

Cookie recipe which is gluten, egg and dairy free:

5 oz Doves Farm wheat/gluten free plain flour
4 oz DF marg - I use sunflower pure
2 oz sugar
2 oz ground almonds
1/2 teaspoon almond essence
Couple of tablespoons of glace cherries, roughly chopped.

Mix together into a cookie dough, shape into balls, flatten onto a baking sheet, bake for about 15-20 minutes at about 150 deg centigrade.

Gorgeous with a cup of tea, and non-restricted DS loves them too!

If it's a chest infection, have whisky instead of wine

He might outgrow the egg allergy in time. When off gluten, his gut function should improve and he might just recover enough to be able to digest egg. Many drs will tell you that it takes 3 months to recover, which is rubbish, for us ("only" gluten intolerant) it's been 4 years so far and we are still discovering deficiencies and absorption issues that need addressing. And coeliac gut damage is worse that intolerance, so prepare for a long but very rewarding journey back to health.
Celiac.com is a great resource and it also has the best expert forum I have come across.

FPE - do you have any bowel ishoos yourself? Or is it more likely that your DS has got this through DH's genes? I only ask because if you have any level or suspicion of gluten intolerance yourself, then steer clear of the whisky - have a vodka or brandy instead (no glutinaceous products involved).

When I think back I can't really remember a solid poo but was all OK till we went to Cuba nearly 3 years ago. He suddenly became bowel incontinent so everyone presumed he had picked up a bad bug hence so long to be diagnosed and on the adult immodium so not sure if genes or just bad luck

For breakfast this morning hes had 1/2 a Mattesons pork sausage thingy, only thing in the house (other than boiling rice) that was GF Been to local health food shop now, so got some food for him. Off to see my GP Thursday as no idea when hospital stuff will come through ....

It will be fine - it's a shock at first but it will soon become second nature!

My son is coeliac, and allergic to gluten, milk and egg. He still has birthday cakes, he still has biscuits! For baking I use Dove's Farm flour and substitute for egg with three tablespoons of water and a heaped tablespoon of cornflour. You could also use a commercial egg replacer as you probably do already.

Ener-G is the brand which has the most items (pizza bases, biscuits, bread, etc.) which are both gluten and egg free. Some Glutafin crackers and biscuits are also gluten and egg free. Barkat also do pizza bases but your own will taste better once you get sorted! If you write to all the gf suppliers (telling them you want egg free as well) they will send you samples. You can then change your prescription if he finds things prescribable that he likes. Loads of the free from stuff in supermarkets are off limits but there are a few things - Tesco free from choc chip cookies are egg free, for example.

This is a very good board:

members2.boardhost.com/glutenfree/

And you will find glutenfree and eggfree recipes saved on the supplementary board here:

coeliac.info/suppboard/

Be careful of cross-contamination - you've probably been told already but he will need his own toaster, and only a clean knife/spoon should go into the butter or jam to avoid contamination with crumbs.

Good luck - given that you do a lot of cooking from scratch already it will honestly be easier than you think!

thehappybellybakery.blogspot.com

Hi there,

My DH is coeliac - diagnosed when he was two as he has it so severely. Yes, it does mean a lot of cooking from scratch, but to be honest there are worse things. DH says it was always worst at kids parties where he couldn't eat anything except the jelly and ice cream!

I think our top tips would be as follows.

• Sainsburys free from range is excellent. They do bread, seeded rolls, focaccia and muffins, all of which (apart from the granary bread) stay together pretty well. I believe MIL says Tesco do some really good stuff as well.
• Breakfast is the hardest meal but Eat Natural do some good cereals - and there are always cornflakes and rice krispies.
• DH's specialist says the risk from oats is that they are often milled in the same place as wheat and it's contamination rather than the oat gluten - probably best avoided for now, but flapjacks are there in the future!
• The absolute best GF pasta we've found is the Salute range which we get from Sainsburys. DH says spirali nicer than penne...
• Dove's Farm gluten free flour is a godsend, we also use xanthan gum with it for cakes, pastry and so forth. You can get xanthan gum from dietary needs direct website. Also, I haven't used it myself but my cousin and aunt get superb results from rice flour on its own used in the same way as normal flour.
• Trick we got from Annabel Karmel to make our own chicken kievs/breaded fish, if we don't have any GF bread handy, is to use crushed cornflakes.

It takes time getting used to but it really does become second nature (DH and I have only been together five years and I've got it all taped!). Admittedly, with the egg problem, cakes etc are going to be harder, but it looks like some other posters have solutions for that. Very best of luck and focus on the fact that he will soon have a perfectly healthy tummy and be feeling absolutely full of the joys of spring.

Thank you all. Just back from Sainburys with a much lighter purse and have supplies for the next few days.

I've got him the Chocolate stars for breakfast and bought the GF flakes to make crispie buns with. Didn't bother with the bread as it looked horrid and will try and get this on presecription till I know what he will eat. Bought a huge bag of rice and some ready packets of it for when we are in a rush.

Got him some wotsits and some snack a jacks as his treats.

I am soooooo pleased he isn't a fussy eater and pretty much eats everything I have ever given him (only thing he doesn't like is sweet potato ???) Will sit and eat plates of dark green cabbage, broccolli, cauli etc so meat and 2 veg it is. Bought the flours too to attempt to make some biccies/bread.

Big hugs - bonding over the fact that we are cooking for t1 diabetic and coeliac xxxx (I don't cook sf for son; we carb count and match that to insulin - very liberating - and he has a pump!).

Bulk baking and freezing will take on a whole new life of its own!

Try genius bread from tescos - fantastic, like real bread. x

Genius is good bread.
I quite like the Ener-G flax loaf for toast, or their Gluten-Free loaf for sandwiches (it's much lighter than the rice loaf which is like a brick) - but I only ever managed to find it in Waitrose. Some other GF people on these threads aren't so keen on Ener-G but that may be because they had recently had real bread, iyswim - I hadn't eaten bread for 5 years by the time I found the Ener-G so was thrilled with it!

Hi thumbwitch , good news is that any spirit is gluten free, the gluten is not carried over in the process of distillation.

Bad news is ordinary beer & lager is not gluten free.

However, more good news is that gluten free beer is now available!

Please be careful with the wotsits and snack-a-jacks - they are not guaranteed GF. Also, you need to read EVERY label - stuff like soy sauce has gluten in, and other foods the "full fat/normal" version will be ok but the "low fat/reduced" won't. Same with stuff like ketchup, brown sauce etc.

On prescription you can get pasta, lasagne, biscuits, cheese biscuits, flour, bread, bread rolls, gnocci, xantham gum, etc. Register with all the GF suppliers and they will send you sample boxes to try along with the PIP codes to give the GP

Ds1 was diagnosed just under a year ago at 11. He could not deal with lactose either, but after 6 months or so on the gluten free diet this cleared up and he is now back on dairy. He had egg allergy as a baby ( had anaphylactic shock) but out grew it at about 7.

He used to like genius bread best, but now prefers the tesco own brand. It looks bad as is in vacuum sacks rather than real break bags but he thinks it is better.

For snacks that are also egg free we have chocolate rice cakes, marmite rice cakes and sesame snacks ( all from waitrose). He also likes ' munch' as a breakfast cereal - corn balls and sugar.

School lunch can be a pain (he has to have lunch at his school) but now he can have dairy it is better.

Not eating out and always having suitable snacks is the hardest part. But we have now found a local pub with proper gluten free choices ( chefs daughter is a coeliac I think).

This thread is 2 years old.

Who is bouncing the bloody zombie threads????

Friendly - this seems a huge thing to deal with considering the massive change in diet but I was diagnosed with coeliac about 2 years ago and have to say it is a small price to pay for not having constant runny poo and feeling dreadful.

I went to a seminar on food intolerance yesterday and the expert there said that 25% of people have some gluten intolerance but about 1% have full blown coeliac.

It is likely that your son either has a genetic disposition from you or Dad (and that needs to be investigated) or that the bowel infection in Cuba made his gut so permeable that it set off the train of immune responses to gluten and now very likely lactose as well. The constant damage to the gut from eating gluten has probably also led to his egg intolerance too.

Don't panic. You will need to start strictly excluding all gluten from his diet and giving him lactofree dairy products. These are easily available in supermarkets but to be honest I cook all my own food from scratch including nice cakes and my whole family eat gluten free now. DW says she feels much better as she has slight IBS when eating UK bread.

Do also remeber coeliacs eat normal meat and veg and even hard cheeses (as it has no lactose in) so it really is just gluten (and possibly lactose) you need to guard against. His egg intolerance may well diosappear after a while.

The main problem is that so many things have gluten in as wheat is a cheap thickener and even things like cornflakes are sprayed with barley malt. If he has lactose intolerance as well buying lactofree milk is easy and I put lactase in cream and make my own ice cream etc.

Oh by the way. Don't start a gluten free diet without talking to the doctor first. Further biopsy tests may be necessary and DS needs to be eating gluten while those are done.

MoreBeta the thread is 2 years old! Sorry.

Thx. Hopefully someone found it useful.