Coeliac disease help

[Fourducksate]

Hi

Due to off the scale blood tests for Celiac Disease, dd had a biopsy yesterday. Although we haven't got official results, the consultant said the intestines were inflamed and showing a reaction to 'something', as was the stomach which was very sore all of which he would expect with CD.

He did say, we shouldn't change her diet until we have the lab results in 7-10 days and in the meantime he has prescribed Omeprazole every day and she will need this for the next 3-6 months to heal things.

Firstly, I am feeling a bit overwhelmed by it all and wondering how we will manage it. Secondly taking something a drug daily for such a long period, worries me. I should have asked at the time, but wanted to get dd home!

I am also very tempted to start reducing gluten now, if it is such a problem. Dd is happily munching Pringles at the moment - she is off because of having a general anaesthetic yesterday - and I keep thinking the Pringles will counteract the medication!

Sorry for the long post, any experiences of this, is this normal procedure?

Finally, we have been asked to take part in some international research for diagnosing Celiac Disease, that will require blood testing every 3 - 6 months. We said yes so they can use the biopsy sample and bloods, but am now thinking maybe this isn't fair on dd. WWYD?

One other thing I'd advise is checking out the Juvela and Glutafin websites ( you can get links from Coeliac UK website). They have free hampers for newly diagnosed coeliacs. It gives you a taster of what they have available (although I wouldn't even bother trying the long life bread - we gave that to the ducks)

GF fish fingers are lovely. I have been having the odd pizza here and there too which have been surprisingly nice. Pizza Hut & dominoes are both doing GF pizza.

Some fish & chip shops will do GF days when they change the oil over. Malt vinegar is fine for some according to coeliac uk.

GF pastry is actually nice and you can buy it ready made along with things like Cornish pasties in As Nature Intended

Morrisons do a good GF range. Their millionaires shortbread and Ricky road is nice. They also do boiled eggs as snacks I often buy on the run.

The big plus of being a coeliac is my diet is much healthier these days. A lot of gluten gluten stuff is replaced with higher quality foods.

Our DD was diagnosed at age 3, she's 19 now. I found Coeliac uk invaluable - their book of gf food went everywhere with me. If there is still a question mark over a definite diagnosis you can't cut out gluten now because then they would be testing for something which is no longer there!

The diet is tricky to get a hang of initially (sausages, burgers, soup, gravy etc) need to be checked out but is soon becomes second nature. The supermarkets have a fabulous range these days (we used to get things on prescription for free but don't bother now). Dining out is also getting easier with restaurants recognising that there are people out there who will come with their families if they can be catered for.

Good luck

Thanks again, I have calmed down a bit after this morning and cleaned one cupboard. We went to a Eds Diner, for tea, they had run out of gf buns, so dd had chicken breast and fries, which were GF. The chef was helpful, but disappointed the burgers weren't GF. Dd gutted she couldn't have her Oreo Shake :(. I should have thought of this before we went.

We were going to get Chinese, but I didn't know where to start with that!

Tomorrow off to a big Sainsburys for a look at our choices.

We are in the North West, if that us any good.

I told a friend I was going to keep a diary, partly to see if dd improves and also as it may be helpful for others, like me, who are totally new to this. I will post a link when it is up.

My first thought is why on earth are goods just not labeled appropriately?

And you will ask yourself daily, wtf has that got wheat in !!!

Chinese - soy sauce has gluten in so most Chinese are not ok. Word of mouth is best here, we have one about 4 miles away that does gf meals but we have not dared risk it.

There's a couple of groups on Facebook which can be helpful.

Oh dear, a trying day, I fear I am not going to be any good at this:(

Breakfast was a bit scatty, as only had rice crispies, bit dd had honey and toast, however, it was in the normal toaster, which although cleaned up, may still have crumbs.

We went to visit an aunt and then to a lovely garden centre, for hot chocolate, they didn't know if it was GF, but they let me read the tin, sugar and cocoa were the only ingredients listed, so I took it it was OK. I had taken some Tesco finest Chocolate Cookies, which did likes, although they did have a selection of GF cakes and pasta and quiche and pies!!!! Hurray!!!! However, Aunt was very tactless and uninformed about gluten.....'does that mean she won't have any cakes then?' Duh! What about 'Mars bar rocky road?' (Biscuits base)!!!!

OH and I didn't have a cake in front of dd, Aunt scoffed large Victoria sponge slice, only DD's favourite!

Popped into Sainsbury for some own brand Chocolate Rice Pops, as listed on Coeliac Uk site (on my list now in my phone), only to find 'barley gluten' on the ingredients list...confused now, is Barley gluten OK?

I didn't buy them, instead got some Natures Path crispy rice, which doesn't look great and some Doves Farm chocolate stars, although DD only has sugared cereal at the weekends. I hope the crispy rice tastes similar to Rice Crispies, but I fear the worst...brown rice?!

DD subdued today, I think reality is starting to kick in, she has two parties to go to in the next few weeks, how do I manage that? Take my own food? How about party bags? Birthday cake? I am dreading calling mums and creating a problem for them.

I also feel a sense of loss too and sad that DD won't spontaneously be able to eat just anything again.

How do you do this?

Some people can tolerate the small amount of barley malt in own brand cereals, my ds can't.

The tesco biscuits please check, even though they are gf they have oat flour in and new coeliacs shouldn't have that.

For parties I always asked the party mum what food they where having and provided a box with food as near as I could get to it in. Party bag - we just accept it and sort it out at home.

Tesco do do a "coated" cereal.

We got a new toaster for ds, just a really cheap basic one, but you could use toaster bags or the grill ?

People just don't realise, I remember not long after ds diagonosed we went to my brothers, he'd put Josh's sandwiches to one side to avoid cross contamination and hadn't put butter on them but they where on real bread ! He thought coeliac was lactose ....

I make gf cakes, normal Bero recipe but use asda gf flour (cheaper than doves) and they always turn out light and tasty. Even the non coeliacs eat them.

Thanks notapizzaeater I think I will do that with the toaster, as ours in a rather nice one and dint really want to ditch it.

No one has said anything about oats and I need to see the dietician....I have just remembered a very good friend of mine us a Dietician!!!!! Honestly I am losing it. ;) Haven't seen her for a few months, but she is on my FB.

How do you know if oats are a no no? DD doesn't always complain of tummy ache and she is always loose when she goes to the loo, not completely, but not quite normal IYSWIM. In the great scheme of things and the damage done, surely it will take a while to get to 'normal'? I don't even know if I would know if she is reacting to gluten. That sounds a bit odd doesn't and I am probably being a bit obtuse, but what should I look for in symptoms that she isn't having now?

Sorry, I am not explaining myself very well.

Ive Messaged you, give me a call ....

In the first few months, I'd try going to new places to eat out that you've checked out online beforehand and know dd will have a choice, rather than fave places where she'll be thinking 'oh, but I used to have that and that'. www.gluten-free-onthego.com/ can give you lots of ideas of places to try as well as the chains like Pizza Express, Nandos etc

It will take a while for her gut to heal, and in the early months she might seem to react to unexpected things - this may just be her very sensitive tummy during healing, so don't rule anything out longterm thats gf iyswim.

Your dd will eat out spontaneously with time. I travel all over the world for work, and eat out a lot. I only make myself ill about once a year - last time was at home through not noticing the different packet of prawn cocktail shell crisps, as Waitrose was gf and Asda wasn't.

Most Walkers crisps are currently gf - they do change very frequently though so always need checking. Drives me nuts.

Its worth making some cupcakes and freezing them. Then if you have a tub of Betty Crocker icing in the cupboard your dd can have a nice cake at the drop of a hat

our dd was diagnosed agreed four.My dh is coeliac so we were ok at home but I quickly realised outside the house and especially parties were going to be difficult.I made a rule that we would only go to cafes etc where we knew she could have something and I wouldn't eat gluten in front of her. I started carying a lot more emergency treats in my handbag.

for parties I ask the organiser what's on the menu. people generally offer /try to cater fit her but I explain that I don't want then spending a lot of money on things that she might not actually like (at this stage we know which brands work and which are just yuck). I then send her with my approximation of the party food and a solemn assurance that I will find her a gluten free version of anything she misses out on as soon as possible after the party.

I usually send a muffin to replace the cake.

We have had some tears but generally I think she would have found something to be upset about / was generally overtired etc on those days.

FDS- it does get better and alot easier.
Oats will be off limits for now. The protein in oats is very similar to gluten and lots of coeliacs can't tolerate oats. Current advice is to exclude oats until the gut is fully healed and then they can be tried.
Once the gut is healed it is much easier to tell when you react to things but you do have to be extra vigilant in the early days. So I wouldn't risk barley gluten.
Agree with making some cupcakes and freezing them. Also try some biscuits and chocolate brownies. Buy lots of fun decorations (check labels) and you can take your own party selection to parties.
I would stick to taking your own stuff whilst your DD and her friends get used to her needs. There may be GF food available but cross contamination can be an issue. My son got gluttened at a friends but he couldn't figure out how as he'd only eaten food he had taken. We eventually worked out he had a packet of sweets and a friend had taken some straight from the packet whilst eating a sandwich, so I assume a crumb was left behind.
I would also advise getting a new toaster or toaster bags - once a toaster has had normal bread it's out of bounds.
Once your daughter is feeling better it will all be worth it.
I have a friend who's 9yo DD is coeliac, we bumped into them not long after my 2yo was diagnosed and we introduced the fellow coeliacs to each other. The 9yo turned to my 2yo and said "sucks doesn't it!". I had just got used to being GF and was feeling really positive about things. I realised then that it is not something a child would want forced upon them, but they are healthy, they don't need medication and the world is becoming more GF friendly.
Symptoms vary With everyone. My DS1 gets tummy aches lasting from 1hr to a few days. He can also get the runs and 'brain fog'. A couple of months in symptoms would last for up to a few days, now a couple of hours (not sure if this is to do with amount of gluten consumed or a healthier gut now). DS2 will projectile vomit for 2-3hrs after a crumb, fall asleep then wake up fine. It doesn't happen that often.
If you don't have an appointment for a dietician yet I'd phone up your gastro consultant and ask for one ASAP, don't be afraid to be pushy with doctors.

Thank you again everyone for you common sense and sharing of experiences.

Notapizza. Can I call you tomorrow eve?

I can't believe, I actually had a cry tonight, which is so unlike me! I have been looking around the net and reading some blogs from Mums with children and their diagnosis and how like you lot, coping with it. One blog has just brought home to me how much dd has been suffering the last few years and I feel so sorry I let it go on.

All the signs were there, I should have seen them, change from being a robust baby and toddler to a more delicate child, pale, from having such rosy cheeks that an American once asked me if I 'rouged' her cheeks! From being the oldest in the class and one of the tallest, to nearer the smallest. Realising several weeks ago she looked like one of the children in Africa, with skinny limbs and a pot belly. How didn't I notice sooner? When did it get so bad?

I have been trying to think when all this started, what could have triggered it? Playing time over and over. I feel so guilty, she has just got on with it all. Oct. 2013, we went to Disney and did a bit more walking, she cried and writhed around at night that her legs hurt, also at home sometimes and I said it was growing pains!

The doctor who told me time and time again her tummy ache was childhood migraine, even when we went to hospital for the Endoscopy, the Doctor had written on her notes....history of abdominal pain and migraine...... SHE HAS NEVER HAD A MIGRAINE, YOU TOLD ME THAT!

Sorry ranting, too late too emotional.

Tomorrow is another day.

Tomorrow is fine.

I felt so guilty when my son said to me how good it was his tummy didn't hurt anymore, he'd never mentioned it as he thought it was supposed to hurt

Be kind to yourself, it is a shock in lots of ways, but it will get much much better.

DS1 was diagnosed coeliac 18 months ago, when he was 4, and DS2 began showing symptoms soon afterwards.

We went gluten-free as a family at home, for several reasons.

1. To reduce worries about cross-contamination and make things simpler at home (we have a lot of people coming in and out of the house and wouldn't trust them all to get it right re: crumbs/condiments etc.)
2. So that the boys can have somewhere that's welcoming and safe food-wise.
3. To 'normalise' gluten-free. It is our normal family diet, not a peculiar way of eating, we wanted the boys to feel that way.

The day after DS1 was diagnosed, DH and I went (by ourselves) to a local cafe that advertised itself as doing GF food. We got talking to a young man working in there. He wasn't coeliac but was very sporty and ate gf as a choice. He was very enthusiastic about the diet and healthy eating generally. DH and I were very heartened by that. We took the decision to treat the change in diet as a trigger to change our family eating to make it more healthy (it wasn't particularly 'unhealthy' before, just average I would say).

We now have a very healthy family diet - lots of meat, fish, veg, fruit, nuts, seeds, some dairy & pulses. I cook from scratch 95% of the time, and do a lot of batch cooking/freezing. It doesn't mean I spend loads of time on it, though I have spent a lot of time working out the best way of doing things. I am not by any means a natural cook, it is very much a learned behaviour! I also bake simple cakes and biscuits. I have now got a Panasonic breadmaker with a GF option and have made some amazing gf bread in it (Bobs Red Mill mix).

Before we eat out anywhere, I telephone or email and check the options, and also get a feel of whether they actually understand the issues re: cross-contamination - if I'm not satisfied then we don't go there. It does reduce spontaneity, that's just how it is. I compensate by doing a lot of 'treat' activities at home, and spending some of the money we'd have spent going out on having nice times at home (e.g. buying craft activities to do together).

We used to eat out a lot, and for the year after diagnosis we hardly ate out at all, which was a big change to our lifestyle. In the summer we have a lot of picnics - got used to taking a picnic with us rather than eating out in a cafe (and found that we ended up eating much nicer food than we used to!) Now we are beginning to eat out a bit more, with more and more places beginning to offer good gf food.

Holidays are tricky. We go self-catering or stay in hotels where I have thoroughly checked and discussed the food beforehand. So far it has all been in the UK - but will begin venturing abroad in the next couple of years.

Parties - I always send the boys with a party meal of their own (and nearly always stay and supervise to make sure nothing goes wrong as they are still too young to take that responsibility themselves - well-meaning adults are always trying to pop something from a communal bowl on their plates grrr!)

I am absolutely 100% positive about it, and I am determined that the boys are as well. School and their friends parents are always commenting to me on how good the boys are with their diets, how they aren't bothered about the things they can't have etc. etc. I think that's partly because I am doing everything possible to encourage that attitude. I try and make their party meals as (or more) inviting than others. They are not too bothered about birthday cake (round here, it's generally in the party bag rather than eaten at the party, so I just remove it). I talk a lot about food, and what's good about the food we eat, so they learn about healthy eating and making good choices.

I am also very conscious that I want the boys to be good cooks - being able to cook well makes a coeliac's life much better. So as they get older I will be teaching them to cook and encouraging them to cook with me and for the family.

Re: breakfast - At home we have Eat Natural muesli - the nicest muesli I have ever tasted (I buy it in bulk on Amazon to get it a bit cheaper). The boys like Dove's Farm gf cornflakes and Nature's Path 'O's, also Dove's Farm chocolate stars. We only have 'O's and stars on weekends, because they're more sugary. In the week, we tend not to have cereal and have things like scrambled eggs / Heinz baked beans on toast / ham / bacon / nuts / fruit / etc. etc. The little 'snap pots' of Heinz beans that you put in the microwave for 1 minute are great, no extra washing up.

Definitely cut out oats and gf products containing oats until you have got down to a clear blood test. We are not there yet, but hoping that the next one will be - DS1's damage was pretty major and the consultant said to expect it to take 2 years to heal.

The best thing is seeing the change in your child. DS1 is happy, healthy, growing, excelling at school, no longer has the tummy aches, exhaustion, brain fog etc. Seeing that makes everything feel utterly worthwhile.

Good luck, you will find a lot of support here, also on this site
message board

whoops gf message board

We all really do understand what you're going through Fourducksate, including the feelings of loss, sadness and guilt. My DD never bothered to tell me that she suffered with heartburn and reflux on a daily basis because she thought it was normal. I also thought that her tummy pains were probably either tummy migraine (I suffer with migraines) or possibly hormonal/start of her periods. Coeliac disease never crossed my mind or the GP's. It was only because the GP thought she might be anaemic (she'd become so pale) that she was sent for a blood test at the hospital. Nobody mentioned that they were also testing for coeliac disease so it was a huge shock. I've always thought that we were very lucky to have been sent for that blood test as otherwise I really do believe it would've taken a very long time to get a diagnosis.

As others have said, gluten free oats are not recommended for at least the first 12 months after diagnosis as the protein is so similar. We were also told that there has been some research done that shows that gluten free oats can in fact cause similar damage to the gut of coeliacs without causing symptoms so we chose to avoid them altogether even before we knew DD was super-sensitive.

Most coeliacs can tolerate the very low levels of gluten in supermarket own brand cornflakes/rice crispies etc as they have lower levels of barley malt extract than Kelloggs. This is why they are listed as 'safe' by Coeliac UK. However, it is often very difficult to tell what they react to in the early days until the gut is fully healed. Once they've been gf for a while, you will normally find that you know quite clearly when they've accidentally been glutened as the symptoms will be more obvious.

As for parties, I normally ask the parents what sort of food will be on offer so that I can provide something similar. Some are very keen to be able to provide something suitable in which case I will recommend a suitable gf cake/muffin to replace the birthday cake but I wouldn't expect or trust anyone to provide gf sandwiches as people simply don't understand the cross-contamination issues. As DD is now 12, most parties involve eating out which can be problematic but many of the big chains now provide gf alternatives eg Pizza Hut, Pizza Express, Ask, Bella Italia, La Tasca etc. McDonald's fries are ok and you can ask for a plain burger with no bun then just take your own gf bread roll. We have also take our own gf chicken nuggets and just ordered fries and drink.

Please don't beat yourself up about all of this. Sadly too many medical professionals are still pretty clueless about coeliac disease (and allergies but that's another story) so it really isn't your fault. It's a very steep learning curve for all of you but pretty soon you'll all be experts and offering advice to others at the start of their coeliac journey.

Just want to say thank you everyone.

DD came home today extremely bright and perky, maybe it's just coincidence, but even up to bedtime, she was so full of life and I am not sure she has been like that for a while.

We had a chat about how she was feeling earlier and she said she felt different, not so heavy and that she was glad it was that she had coeliac, because she had been worried about what was wrong. On questioning, she said she thought it was a serious virus and then when the results took so long, she thought she had cancer but she didn't want to tell me in case I was worried. :(

Anyway, half way through bedtime story she said she needed the toilet, but then came back in and said that she couldn't 'go', but felt she needed to, sorry if this is all too much information!

Anyway, I went back in the bathroom with her and chatting away, like girls do, when there was a definite sound of a solid poo! the look on her face was a picture, she was so excited, she said she couldn't remember the last time she had done that, neither can I to be honest, can it really be normal in just four days? I can't tell you how happy she was about it :). She went to becd with a huge smile on her face.

At least we will now know when she get 'gluttoned', as that is obviously the outcome, especially if it is so quick.

I managed today to get some pretty GF iced cupcakes in Tesco for when she came home, I was pleased I had done this, as the friend who was picking her up had taken her to the cake shop after school with her two girls, but they didn't have anything GF, despite the lady saying 'we get asked that a lot!' She had to sit in the car with her two friends scoffing cakes, it was great when she got home and told me about it, for me to then present her with this beautiful cake!

You were all right, ( of course you were!) the benefit of seeing your child better, far outweighs the difficulties of being GF.

Notapizzaeater I am about to ring you!

So glad to hear that fourducks - and I think your friend was rather thoughtless - no way would I let my children sit there scoffing cakes that another child present couldn't eat! That's fab that you had the cupcakes waiting at home.

With DS1 we saw improvements in just a few days - in a few weeks they were significant, and it's continuing to improve 18 months later. The difference in energy levels is unbelievable (exhausting actually....)

The improvements will just keep on coming - hurrah for your lovely DD.

I have just read all your posts and wonderful information again in my coffee break.

I feel teary again but in a good way!

Thank you all. Thank you to notapizzaeater for the extremely long chat last night

In fact to all of you Vipers!

That's wonderful news Four! So pleased for you and your DD. We also saw improvements within days and these continued over the next 12 months. Just had DD's most recent results back and after 2.5 years gf her Ttg levels are now 2.3 so I'm over the moon (prior to diagnosis they were over 150 with anything over 10 considered abnormal).

Fourduck - apologies I have not looked through all of the posts on here so maybe duplicating however;

Don't panic it does get easier to the point of becoming second nature.

DD will learn to live with it and it is getting easier re all the labelling.

Cakes and biscuits - make your own is my advice, Doves Farm Flour is the best the following recipe has seen me through many a "it's not fair moment" 8ozs of the following: sugar, butter, SR Flour, dash of G/F baking powder, sprinkle of cocoa and 4 eggs - will be enough for 2 x 8" sponge bases or 45-50 buns. Blitz in magimix and bake until springy.

Always have some pre-packed biscuits in your handbag so if you want to have hot chocolate/coffee etc out you can do. I have been known to take bread to places that I know will not have any G/F bread and ask them to make a sandwich on a clean chopping board using a clean knife.

Ask school to let you know what food related things they will be doing so that you can provide an alternative so that DD is not left out.

Give class teacher a few packets of sweets/ GF things so that if Birthday treats are given out DD is not left out.

It does get easier when we knew about DS I went to Sainsburys and burst into tears on a very sweet ladies shoulder who was also Coeliac and stood in the Freefrom Aisle selecting some pasta. She was very calming and helpful as I had images of DS having to survive on jacket potatoes.

Oh and don't apologise or minimise the effects of being Coeliac to anybody, I found being very matter of fact about it meant being listened to.

Best of luck my DS was so much better 3 days after removing wheat, gluten, barley, rye etc etc from his diet

Just a quick update.

GF diet so far OK, we had one hiccup, when we went to Sunday lunch and there were some little snacks that DD took without thinking, she was alright, but had tummy ache later.

School has been great, although one day she had a sort of pizza on GF bread, which she said was disgusting! One of the girls in he class was a bit silly with her biscuits and kept putting them in DD's lunchbox to 'contaminate' it!! I had a word with the teacher and she has spoken to the class about it - she seems extremely switched on about even a crumb!

Hospital report came back, horrid reading that bloods were 200 and she is a 3c on the Marsh scale, which means total villi atrophy. Harder to read it in black and white and I have no idea how long it will take to grow back, still waiting for dietician.

Made a great chocolate fudge cake, but it is a bit dense, I used Xanthan Gum, but wonder if I should have left it out?

Yellow - thank you for that, we will make some this weekend.

Everyone has been great about it and helpful, although one friend said that 'a bit won't hurt' and that 'well she'll grow out of it', which was a bit worrying. Needless to say, I put them right!

What I find hard is entrusting her to others, the same friend who collects her with her son after school, often goes to the sweet shop, she has come back with chocolate eclairs, haribos and Toffee Popcorn. Luckily they have all been OK - rather by luck than judgement. I keep telling DD not to rely on sweet packets, friend seems a bit 'oh I am sure they are OK'

DD actually looks a lot better too.