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Coeliac disease help

(54 Posts)
Fourducksate Wed 06-Nov-13 12:39:02

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?

Fourducksate Wed 06-Nov-13 12:40:09

Oh, even in that ling post, I forgot to say she is 9!

CMOTDibbler Wed 06-Nov-13 12:51:04

The thought of going gluten free is overwhelming, but you will get the hang of it amazingly quickly. I still remember the horror of it, 15 years on - but things were an awful lot harder then as nothing was labelled.

If your dds stomach is very inflamed, then the omeprazole would seem sensible to make her more comfortable while everything heals and you all settle into the diet.

Someone else had a thread about newly going gf, and there was loads of good advice on there if you search

freefrommum Wed 06-Nov-13 14:50:00

I'm very shocked that your consultant has said not to change her diet until the lab results are back. My DD was also diagnosed at age 9 and we were told we could start her on the gluten free diet as soon as she came round from the biopsy given her very high blood test results and the preliminary signs seen during the biopsy. I personally can't see any reason not to go gluten free now that she's had the biopsy but if that's what the consultant has said then I guess you have to trust his/her judgement. I totally know how you feel though as I felt awful continuing to give DD gluten during the 6 weeks between her blood test results and the biopsy, especially as the consultant said he was 99% certain she was coeliac just from the blood tests. You feel as a parent that you are poisoning your child and making them ill unnecessarily sad

My DD is now 12 and absolutely fine. She's a 'super-sensitive' coeliac so has to be extra extra careful (she can't even tolerate the 'safe' levels of gluten in codex wheat starch) but it is still not that difficult to manage once you get used to it. She was obviously quite upset initially at the idea of not being able to eat her favourite foods (ie bread and cakes!) but we've managed to find suitable alternatives to all her favourites and lots of restaurants now cater for coeliacs. Please contact Coeliac UK for help and advice and become a member as you will get the coeliac 'bible' (Food and Drink Directory). Going gluten free really isn't that difficult these days as all the supermarkets stock a good selection of foods plus there is more awareness of the condition. There are a few things you will need to think about at home such as how to avoid cross-contamination. One crumb of bread contains enough gluten to make most coeliacs very ill so you will need to use toaster bags or a separate toaster plus separate butter/spread/jam etc and separate utensils eg for stirring gf pasta. All of these things take a little getting used to but will soon become second nature. It was a bit easier for me as my younger DS already had life threatening food allergies so I was used to having to read every ingredients list and how to avoid contamination etc.

As for the research, I think it's a really good thing to take part in. To be honest, most coeliacs have to have blood tests fairly regularly to begin with in order to make sure their Ttg levels are coming down so it doesn't sound as though it will involve lots more than usual (assuming the results can be used by the consultant as well as for the research?). But I think this is really a decision for you and your DD to make together.

With regards to Omeprazole, as far as I'm aware it is quite commonly used long term for those with gastro problems including reflux so I really don't think there's anything to worry about. I'm pretty sure it's even prescribed to babies with silent reflux.

Feel free to send me a personal message if you want any more advice and I hope your DD responds as well as mine did to the gf diet once she's able to go on it.

Charmingbaker Wed 06-Nov-13 15:53:49

My DS2 was diagnosed with coeliac disease on his bloods alone as his blood test results were high. DS1 was tested after DS2 and his results weren't high enough to diagnose on bloods alone so he needed an endoscopy. Visuals from the endoscopy showed likelihood of CD but they wouldn't confirm until lab results were back and I was told not to take off gluten until diagnosis was confirmed.
I chose to ignore this, my DS1 was reacting badly to gluten by this point . My own justification was I had only been keeping him on gluten for the test. Even if the test came back negative there was no reason I had to give him gluten. Before I had to think about a GF diet I wouldn't make a conscious effort to give them gluten every day.
I think the main reson they say to stay on gluten is that they only advise a GF diet when coeliac disease is confirmed.
As for the research, it depends how your DD is with blood tests. My boys (age 2 & 15) hate them and they have a difficult enough time coping with there routine blood tests.

Mollydoggerson Wed 06-Nov-13 16:01:00

My father was diagnosed with Coeliac disease, there is lots you can eat. Don't fret too much, take each day at a time. Get some coeliac cook books, they will give you lots of ideas and also Tesco's have a pretty large gluten free section. It is totally doable, no harm to go on the diet yourself too, just for moral support and also it will help you really think about what you need to buy in your food shopping.

While it might seem daunting now, your daughter will thank you for it in future and she wont be eating all those crappy carbs that most of us eat. Her body will look and feel so healthy as she grows. It's great you have caught this so young.

Fourducksate Wed 06-Nov-13 18:01:33

Thank you for the replies it is overwhelming CMOT, I don't know where to start.

Freefrom, that's exactly how I feel, giving her stuff with gluten, guilty!, then I keep thinking maybe it isn't Celiac and something else has caused the inflammation and other symptoms and that the Dr. Wants to check those out first sad despite her bloods having a reading of 200 apparently, when normal is 0-10.

I have had a look at the Coeliac UK site, but haven't joined, just in case it isn't - maybe I am in denial!!!!!

The thought of having to keep stuff separate by way of crumbs etc. is definitely daunting, I hope she won't be as sensitive as that, the fact she has probably coped with the last two years at least and possibly more is amazing.

I am also concerned about me, for several years I keep getting itchy blisters on my feet, they come up for no reason and can drive me mad, I also get it on my hands now and again. Looking through the CD site, I am thinking this could be the reason, although perhaps I am getting paranoid, I have been to the Dr. Once and he thought it could be heat, but I know it isn't.

I think I m going to cut out the obvious gluten foods as a start over the next week and then see what comes back from the hospital.

Ironically, DD is quite cheerful about it, it means she will have a 'special' card at school!

skinnyrascal Wed 06-Nov-13 22:02:46

Fourducks - not that I want you to feel this will be hard but I'm afraid keeping food separate is non-negotiable. She may not be sensitive enough to have to remove codex wheat starch, but all coeliacs need to avoid cross-contamination. as freefrom said all coeliacs are harmed by even crumbs containing gluten - even if it doesn't give any symptoms! Not sure if you thought some weren't sensitive to that or if it was just your head racing and the way it came across in your post.

I sometimes despaired at youth groups, restaurants etc that used to look at us as if we had horns when we explained that my wee sister couldn't even have foods that had come into contact with any gluten containing foods. I think they thought my parents were over-reacting. Eventually got apology from woman at youth club when she read the info form coeliac uk we gave her, she seemed to think we were talking BS.

Fourducksate Thu 07-Nov-13 11:45:12

Skinny - you were right, I didn't think that all Coeliacs were as sensitive as that, I thought that some may not be so bad as they could have things that may have been in contact with wheat, even if what they are eating is free.

It would seem I have a lot to learn about all this. I have read just about everything on the UK site, I see there is one in the US which I have had a quick look at. Obviously those who have posted on here have the experience, is there anywhere that you specifically found useful, or any books that helped.

Also, can myself and her Dad follow a gluten free diet too, is there any thing to suggest this isn't good? I seem to be reading mixed views on this, but feel it would help not only dd but with the contamination thing too.

Sorry to sound so dim! I am not usually like this!!!

Dd skipped off to school today, to tell about her adventure!

freefrommum Thu 07-Nov-13 15:50:55

Skinny is right, ALL coeliacs have to avoid cross-contamination, not just the super-sensitive ones like my DD. Sorry if I didn't make this clear in my previous post. The problem is, some coeliacs may not even develop symptoms after consuming small amounts of gluten but the damage to the lining of the bowel will still occur and this can cause serious long-term health problems so it's really important to be as careful as possible. I know it all seems over-whelming and difficult to get your head around but I promise you will get the hang of it and it will become second nature.

I found Coeliac UK really useful and I once rang the helpline to ask some questions and they were fantastic, so helpful.

As for you and your partner going gf, this is very much a personal decision. In our house, DH and I have not removed gluten from our diet so we do have to be very careful when cooking and preparing food but as I explained before we were already used to this due to DS's allergies. If you do decide to go gf then you will need to make sure that you are getting a balanced diet and really you should never eliminate large food groups from your diet without seeking medical advice first. It would be a good idea to discuss this with your DD's dietician as they will be able to offer advice on how to follow a gf diet safely.

op,I thought it is advised that the whole family is tested? I think there is up to 10% chance of familial links. my dh is coeliac and one of our dc. We all eat gluten free at home. please don't cut down on your gluten until you have had a test. the blisters sound like dermatitis herpetiformis an associated condition with coeliac.

Charmingbaker Thu 07-Nov-13 20:57:46

OP - both my boys are coeliac, DH and I are not (both been tested). Our house is GF apart from DH sometimes having beer. I had 2 reasons for turning our house GF, firstly it would avoid any issues with cross contamination, secondly I wanted my boys to have somewhere where they didn't have to think 'can I eat this'. They know that all food in the house is safe for them.
I am almost GF, occasionally when we are out I will have something, DH often eats Gluten when out.
I find supermarkets own brand labelling really useful. Own brand labelling has an allergy box which will state if the product contains gluten- easier than going through every ingredient. I also find M&S quite coeliac friendly - their sausages, burgers and curries tend to be GF.
One thing to watch out for is oats, you will be advised to be oat free at first, so need to check labels for this. Some products labelled GF have oats in them (My MIL has bought quite a few Tesco Gluten Free biscuits which had oats in them).
There are lots of websites full of recipes. I really like 'the Intolerant Gourmet' cookbook and website. Her recipes are really easy to make and the ingredients are easy to source. (The book is also Dairy and egg free, but I use butter and eggs in the recipes)
Lots of mainstream food websites (Eg BBC, Smitten
Kitchen, Good Food) have Gluten Free sections.
We've been GF at home for 18months now and it's just part of our life now.

Fourducksate Thu 07-Nov-13 22:03:39

Thank you all again.

I have an appointment myself next week with the Dr (it takes over a week to get one at our surgery, but that is another story!). We may know by then what the outcome is for dd.

DD came home today and has had tummy ache. I feel so bad for her now we know it is likely to be a reaction to gluten - The canteen staff didn't give her bread today and dd thought that was odd, (I think something has been said to them about the tests, probably from her teacher), but didn't worry about the chicken nuggets! I thought that a bit odd, but as I haven't offically informed them I wouldn't expect them to change things yet anyway.

Thankyou everyone for your help and advice so far, it has really helped.

notapizzaeater Fri 08-Nov-13 17:34:32

School probably won't change anything until they have the official letter.

You may find she reacts much worse to gluten once she's been off it for a while. My ds reacts 2 hours afterwards, which helped us at first (unfortunately he is a super sensitive one too)

We are 99% gf here, dh has real bread for breakfast (I don't eat bread) but every meal is cooked gf for all of us.

Theresa71 Mon 11-Nov-13 12:02:30

It's definitely worth all close relatives being tested, as there's something like a one-in-ten chance of them also having Coeliac Disease if a parent, sibling or child has it too. I was diagnosed myself 6 years ago and was advised to get my children checked, turns out that my son is too and the difference within 6 months was enormous. Shops and restaurants are getting better and understanding it but mistakes still happen. Convenience stores can be harder to shop at because of the limited range, sadly wheat flour is often added to products which have no functional need for it simply to make production cheaper.

Fourducksate Fri 15-Nov-13 21:21:08

It was confirmed today by the hospital, dd has Coeliac Disease and to start a gluten free diet ASAP,

Went to Tesco tonight to get some snacks and biscuits, she tried a couple and hated them, must admit, they didn't taste nice either sad

Had a chat with the cook at school, all is sorted there, they have one other child who is also Coeliac so have things in place, they were very accommodating.

Started looking through cupboards, threw a few things out, intend to go through everything tomorrow and clean and put in containers anything that can contaminate.

Now need to wait for GP appointment and dietician appointmentment.

Has anyone any recommendations for nice tasting snacks/ biscuits for kids? Also what is the best bread?

Thanks.

CMOTDibbler Fri 15-Nov-13 22:03:23

Biscuits I like: Kelkin gf jaffa cakes, Prewetts gf christmas tree shortbreads, Kent and Fraser ginger biscuits, Prewetts cookies. Don't buy digestives, they are all rank imo

What kind of snacks does she like?

Bread - I like Genius for toast, and for sandwiches I use Newburn gf wraps

NothingsLeft Fri 15-Nov-13 23:00:50

Tesco do good digestives and they make a fab cheesecake. They also sell cheap chocolate wafer biscuits that are a must.

Bread is ok toasted but my sandwich days are over. Fruit loaf is nice, crumpets and hot cross buns are good too. Again tesco's seeded own is a good as any.

The co-op also do good GF stuff. The down side I find to having dietary requirements is you have to shop around but you soon get used to what you can by where.

Hope she feels better soon smile

notapizzaeater Fri 15-Nov-13 23:04:00

Be careful with the tesco gf biscuits and the Prewitts, they have gf oat flour in them and newly diagonosed shouldn't have it at first (was 18 months before the dietician suggested we try it and he reacted confusedconfusedconfused)

We have the newborn wraps, also asda ones. I turn them into pizzas too. Bread we don't like the supermarket stuff (but m & s version will do at a push) we get bread and doughnuts from wheat free bakery direct. I place a big order at a time so postage isn't so bad.

Pasta, we use glutafin lasagne (on prescription) - make it the day before and it's "softer". I buy Heinz gf pasta from the shops.

We have lots of rice now sad

Jacket pots are a staple when out.

Mcd's are good when out - ask for the burger without bun, the chips are ok, the crunchie and dairy milk mcfurries are ok.

Pizza Hut, dominos, ask, pizza express all do gf pizzas now. If out you need to check they don't cook anything else in the same oil because of cross contamination.

At home we use spoons in any jars and spoon it on so no crumbs in jar. Butter hubby has lurpak, we have anchor so we always know which is which.

I threw all wooden spoons away and got new chopping boards, baking trays to start with where a diff colour but we now eat 95%gf. Hubby has normal toast for Breakfast everything else is gf for all of us.

We've been coeliac for 4 years now so it's second nature. Any questions just ask.

Are they testing rest of family ?

notapizzaeater Fri 15-Nov-13 23:07:30

Also m and s is your friend. All m and s sausages are gf including the "cheap" ones. The Xmas food has some lovely stuff, they have mini chicken kievs.

Shopping will take you ages to start with but it gets better. I don't shop at one shop anymore I alternate between them and buy different food in each.

notapizzaeater Fri 15-Nov-13 23:08:37

Just thinking of thngs. Seabrook crisps are gf (walkers aren't)

We love choc / yoghurt rice cakes as a snack.

Charmingbaker Sat 16-Nov-13 08:57:14

As a pp stated, watch out for oats, especially in Tecos FreeFrom range.
I find Genius seeded bread the best of the shop bought ones. The dietician will help sort out prescription food for you. I found Juvela fresh fibre bread the best ( only available on prescription) but that has codex wheat which one of my DCs can't tolerate, so we get Genius brown bread on prescription now. I prefer the Bialimenta prescription pasta and Doves Farm is the best shop bought pasta (though Tescos is good and cheaper).
Lots of crisps will now be a no-no. The whole walkers range is no good, but lots of own brands are fine as are most Kettle Chips, Popovers, Pombears and Tyrells.
You'll also find Alot of chocolate is out. My DCs are fine with Snickers, Bounty, Chocolate & milky buttons and Reeces Peanut Butter cups. Cadburys can be quite confusing as some things are at risk of cross contamination but their labelling is good. Most Green &Blacks is no good.
I have found with cakes and biscuits it's best to make your own. Shop bought ones are generally not that great and very expensive. Doves Farm does excellent Gluten Free Flour and there are lots of online recipes. I find it easier to make a batch of biscuit dough, cut out the shapes then freeze them and cook a few at a time from frozen.
M&S is great got GF, but all supermarkets own brand produce is labelled really well.
Things to watch out for are - malt vinegar as an ingredient, stock cubes ( I use marigold bouillon or knorr stock pots), fizzy drinks and juice ( my teen DS loved fizzy drinks but cant tolerate lots of brands and my youngest can't take most squash).
The other thong to remember is that mistakes are made at first but it does get better. My oldest was diagnosed when he was 14 and for the first 3 months was accidentally gluttening himself every few weeks. However a year in and it hardly happens now. My DH also gluttened DS2 early on by making him toast in a toaster which had once had normal bread in it. You just have to all learn from mistakes and adapt as you go along.
Good Luck

Fourducksate Sat 16-Nov-13 10:40:50

Thank you everyone, I have been keeping a list, may even do a spreadsheet shock.

The Coeliac UK list isn't the easiest to use and I was getting frustrated this morning trying to make a list using the scrapbook. Someone needs to sort that out. Weight watchers have a brilliant program.

Anyway, this morning wasn't good, I had some Kellogg's Rice Crispies, thinking they were OK and now see they may not be, looked at the Frosties, which she has at weekends and they have barley in them!

Then looked at her black currant squash, having read a comment up above and I have no idea, nothing on the label as wheat or Barley, it is Robinsons Summer Fruits no added sugar, she loves this warm, any ideas?

Thanks about the McD, although she always took the bun off (she doesn't like bread much), loves the chips, although also liked the chicken nuggets.

I am starting to feel really sorry for her, but remaining upbeat. This is going to be soooooo hard, my admiration for you all who manage this everyday.

NothingsLeft Sat 16-Nov-13 10:57:04

It is hard but you get used to it. I was devastated for well over a year after diagnoses but hardly think about it these days.

I think most standard cereals are out tbh. Some own brand cornflake/rice crispies are ok. The GF cereals are pretty good but like mist if the substitute stuff it's expensive.

The coeliac uk book was really useful in the beginning. It lists all the safe foods by shop/brand I just stuck to that initially and got to know what was or wasn't ok.

Charmingbaker Sat 16-Nov-13 11:03:26

The juice should be fine as long as it not Robinsons Barley juice. Sometimes glucose syrup can be derived from wheat which my youngest is super sensitive and I think this is why squash can upset his tummy, but my oldest is fine with squash.
I buy Doves Farm GF cereal, and I have heard that some supermarket own brand rice crispies and cornflakes can be GF but not sure which ones. Kelloggs cereals are a no go.
You can eat some things in McD but Burger King and KFC are no good. Lots of chains have GF menus -Ziizi, Pizza Express, Pizza Hut, Giraffe, Wagamama. One thing to always double check is that chips/ fried food is fried in oil which hasn't been contaminated. I have found in Giraffe they can cook GF chips when it's quiet as they try to keep one fryer GF, but when it's busy they offer use both fryers for Gluten so chips are off the menu. Most of the time staff are knowledgeable and helpful.
I think you do go through a sense of loss at first, I remember walking round the shops and only seeing what they couldn't have. 18 months on and my brain has re-programmed, I now see all the things they can have.

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