New coeliac/ gluten intolerance support/ top tips swaps thread <insert funny title here>

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We're day 1 of GF life for my DD who was diagnosed yesterday aged 2 after a winter of constant colds and losing weight, grumpiness and loads of other hallmark features.

We're feeling mush more positive about it now we know roughly what we need to do but already wondering how to manage breakfast cereals and how to get her iron and zinc supplements into her as she won't accept anything that doesn't look like what she's used to. Have ordered a big online shop and joined Coeliac UK and quite excited about getting a hopefully happier little girl as she's been a littleshit tiny dictator since before christmas. Thought it was just terrible twos!

All welcome !

May I jump in with a couple of questions? I've just had blood test for coeliac disease. Doctor told me my gliadin antibodies !gG and IgA are both over 200 and I should avoid wheat. But when I asked does this mean I have coeliac disease she shied away from it and sat right on the fence saying that as I am full grown and "not skinny", (and have survived thus far - my reading in-between the lines) she would just strongly advise I avoid wheat. So - can anyone help me understand, and do I have coeliac, based on these results?

And do I have to avoid lager?

And help! How do I avoid wheat. I cannot imagine not being able to fall back on my emergency pizza, pasta, sandwich. She even told me to avoid soup as it's often thickened with flour, so she was pretty insistent I am strict with the wheat thing. But does that mean coeliac or not???

thanks

Erm... I'm full grown and definitely not skinny - was a size 20 when diagnosed! It's a bit of an urban myth that all coeliacs are skinny things - because many coeliacs can't absorb fat, but as my GP said to me, I clearly don't have that problem . But I can't absorb iron or calcium - it's really important if you're coeliac that you remain entirely gluten-free.

I'd go back to see a different GP if you have one to go over your results again - sorry I don't know if your levels mean you are coeliac, but if there's any question, you should have an endoscopy to confirm and then be referred to a dietician.

Just because you don't look like a coeliac doesn't mean you aren't one!

Yes you have to avoid lager... and check soups - cornflour is OK so many soups are fine. Pret a Manger always have a g-f soup on each day for example and lots of fresh and tinned soups are fine.

Sorry you've been left in confusion - it makes me really cross when doctors give unclear and frankly crap advice. Definitely try and see another doctor/GP if you can.

Ernest, your doctor sounds useless. You need to be referred for a biopsy to confirm the coeliac diagnosis. Until you have the biopsy you should continue with your usual diet, as you need to be eating gluten for the biopsy to work.

After the biopsy, assuming it confirms a coeliac diagnosis, you will need to go gluten-free (not wheat-free, they are different things). Coeliac UK is enormously helpful. And you will be able to eat pasta, sandwiches etc. - just with gluten-free bread/pasta. If your diagnosis is confirmed by biopsy, you will be eligible to receive some gf bread/pasta items on prescription also.

thanks, v. helpful, do i need to get dc tested too?

Yes I would ask for that - they have a 1:10 chance of being Coeliac if you are, rather than 1:100. But I'd get your diagnosis/testing sorted out first, so you know what the score is, and then have a think about testing for your dc.

Agree with Dotty. Current NICE guidelines are for all first-degree relatives of someone with coeliac to be tested. First degree means parent/child/sibling. So if your diagnosis is confirmed, then yes, get your DC tested.

Yes - just remembered my parents and brother all got tested and all came back negative!

Just out of interest Dotty, how old were you and what size are you now, if you don't mind me asking?

How are people tested for coeliac in Uk?

Ernest Over 200 from memory is very high and therefore you ought to get a biopsy done asap to get conclusive diagnosis. Are you overseas? Basically in UK they often need official diagnosis for your food prescription - although provisions vary in different PCtrusts around UK. I recommend you have a look at coeliac uk FAQ and advice on diagnosis - you'll see there that weight not diagnostic criteria (!). Your Dr sounds poorly informed as wheat is only one grain that contains gluten, you also have to avoid barley and rye. However, there are other products made from wheat that do not contain gluten (like wheat dextrose or wheat codex) so its important to get proper information about checking food labelling.

Also if possible you should get the tests all done before you go off gluten, otherwise you may have to reintroduce gluten further down the line for many weeks/months, especially if you go on to have other health complications that are atypical. If you have been feeling unwell I should imagine this is not something you would want.

Good luck!

Well hello! I'm just diagnosed coeliac and have been lurking in this section.

Hi pinot. Good luck w. your dx and adjustments.

dh totally downplaying my blood test results and saying not to jump to any conclusions, which I suppose is right but feels totally unsympathetic and that he does#t believe me. Is that irrational?

Doctor I always thought was pretty good, so disappointed at this apparent error.

I have got an appointment for 24th May, do they tell you there and then normally, or is there more waiting? As I shouldn't change my diet before test, feel like having a farewell binge to all nice foods and forbidden drinks . Is this silly?

Oh, and dh says that if I have got it, it's because I'be drunk too much beer ( have 2 or 3 alcohol free lagers most nights). It's alcohol free so I thought it was a pretty harmless treat. So if I am +, it seems like it'll be my fault. Apparently And if I have brought in on myself by going mad having a nightly couple of bottles of af beer, then a few nights off will sort me out. DOesn't believe it'll be a permanent thing. Is it always the case that a + dx for coeliac is lifelong, or does abstinence for a period 'cure' it?

Ernest, you need to check whether soup has had a thickener added, but also whether stock cubes have been used as they most often contain wheat to hold them together. You need to be careful of things like soy sauce and use tamari soy sauce instead. Some drinks - particularly cloudy drinks - have gluten in them. I've been coeliac for 6 years but am still making mistakes - Tesco ginger beer contains wheat/gluten but I didn't realise until it started to make me feel ill...
You also need to get used to having snacks on you rather than being able to run out for a sandwich etc and switch to salads (without the dressings just to be sure) when eating out.

Pretty sure beer has NOTHING to do with it-usually genetic predisposition! Your dh wrong wrong wrong, and sadly it is life long diagnosis if you're coeliac. It's a serious condition and can have awful outcomes if diet not adhered to but on plus side once your up and running as gf at least you don't have to take meds!

If you're coeliac it's an autoimmune disorder and has nothing to do with what you've previously eaten/drunk!

I was diagnosed aged 35 but I think I must have had it for a long time before then, as my bones are fairly knackered and I'd always (since being tested at 18 trying to give blood) been anaemic - but that was put down to heavy periods, rather than anything else.

I only got diagnosed when I ended up in hospital with stroke-like symptoms- paralysis and stuff - it was put down to an atypical migraine but one of the many blood tests they did uncovered coeliac. I think my body was just knackered with it all and acting out!

I've always been big, from being a teenager, so have been anywhere between a size 18 - 24 all my adult life, but since last summer have been trying to lose weight and am now a teeny tiny size 16 . Bloody hard work - I don't lose weight easily, sadly...!

Good luck with your doctor's appointment - hope you get some clarification!

I read that it's only in children that one of the symptoms of undiagnosed coeliac disease is failure to thrive - ie no weight gain, very skinny etc. In adults it's far more likely to be the opposite - bloating and overweight.

Coeliac disease cannot be caused by your current diet - but if you're consuming a lot of gluten then your symptoms will obviously be worse. If it was caused by diet, then children would not present with the disease until later in life. My DD had obvious problems from about 7 months - one month after I introduced gluten into her diet. It took me another 2 years to get a doctor to take any notice of me and stop dismissing me as a neurotic first-time mum .

And GPs do not know enough about coeliac disease - at an appointment with one of the younger GPs at our practice a few months ago, the subject of my DDs' coeliac disease came up and he asked me for some background on their diagnosis and care...basically I gave him a tutorial on it, which he was grateful for so that he might be able to diagnose it in someone else in the future .

P.S. You can get gluten free beer

Hi everyone....
my boys (4 and 5) are going to have their biopsy and endoscopy this Sat...
to say I am nervous and apprehensive is an understatement! My DH is going with them as I have to stay at home and look after our daughters (no family around). I clearly would have preferred to go with them! Apparently the hospital nurses told me they will be very well looked after so no need to worry! My biggest worry is the general anesthetic and how they'll react. Hopefully they will be ok....

It's been really terrible for my DS2 to go back to gluten. Not as bad as we thought (consultant agreed to put him on gluten free for a while as he was extremely ill) as clearly 16 days was not enough for his body to get back to where it had been, but we have seen a decline and I feel sorry for him every day. Our other son has no symptoms so it's been easier for him.
Just wanted to come on here and share really as it's hard not to think about it!!!!! My DD1 also has her first dance exam on Sunday so trying to keep spirits up for her as it's a big thing for her and I hope she does well in spite of all the bad times our family has been through in the past few months :(

Hi yellow. My DS1 (age 4) had his biopsy/endoscopy a couple of months ago. It went well, and the hospital did everything very kindly. All the staff were lovely with him, and explained things to him very nicely. For the general anaesthetic, he sat sideways on my lap, with one nurse showing him a book, while others stood behind me, putting in the needle and general anaesthetic behind his back. (He'd had the local anaesthetic cream on his hand).

They asked him to count to ten - he didn't make it past two. I felt him just go limp on my lap (which was rather an emotional feeling for me). Then the nurses/doctors helped transfer him on to the table and they told me to give him a kiss and walk out of the door.

The procedure only took half an hour, but as you can imagine, DH and I were completely on edge, pacing around, waiting for it to be over. The only thing I can fault the staff on is that they were a bit slow fetching me back to the recovery room - I wanted to be there when he woke up, but he was already awake and a bit upset (though a male nurse was being lovely and reassuring with him).

He was a bit tearful and grumpy for the next hour or so - partly because he was starving as by then it was about 2pm and he hadn't eaten since 7am. Make sure your DH takes plenty of (gluten-free) snacks with him! Once he'd eaten, he felt much better. They let us go home after about an hour (once they'd seen he was fine, and he'd done a wee.)

The next day he was absolutely fine - went to his swimming lesson and was running about.

I really sympathise with you on having to put your DS2 back on gluten. My younger son (nearly 3) is still on gluten and having coeliac symptoms. His blood test was negative, but given the symptoms and family history, the consultant has agreed to biopsy him - next month hopefully. I really want to get it over with and be able to go gluten free with him too.

Let us know how the biopsy goes on Sat, and the results.

Thanks so much wolv for the reassuring words!!! I will log back in on Sat and let everyone know how it went......I am pretty sure DS2 is coeliac but I have a small doubt about DS1 only because despite his positive bloods he has no symptoms, but we'll know soon enough!!!

It is hard to know, isn't it? Coelic seems to be a tricky beast, comes out differently in everyone. You're doing the right thing by finding out.

Ah good luck yellow my ds was done last summer and it's quite a tiring day, the anaesthetic part is quite emotional for the parent but ds Didn't remember a thing and didn't even have a sore theoat! Just a but drowsy for a while. The canula ( is that what they call tube in hand?) was scariest part for him (3 yrs) but I chose not to go into too much detail until we were there, this obviously depends on child and age. All in all he remembers that as quite a special day and nurses were fab.

I really fought the reintroducing of gluten as my ds was very sick and had hardly kept anything down for weeks. I think they should fast track very symptomatic children I felt like I was poisoning him, in the end dr admitted it was unnecessary to reintroducs gluten as he had no villi at all in bowel despite six weeks off gluten. The dr was so casual about it it really upset me. Glad it's almost over for you it's honestly going to be fine

Oh yellow it'll all be behind you and your family before you know it but I can really empathise that the hours must be agonising getting closer to it. Hopefully the day will pass calmly and sunday will be a big day of GF celebrations for you.

Good luck yellow.

Is the biopsy with the camera thing done under GA for adults too?

I have a choice - in 2 weeks with gastroenterologist dpecialusing in coeliac about 45 mins away with child care problem, or in 3 weeks with bog standard gastroenterologist at a practice 2 minutes from home.

Wets?

Hi - I think for adults it's usually done under mild sedation - or I think you can have it with no sedation at all.

Mind you, when I had to have mine, I cried like a baby and insisted on a HUGE dose of sedation - kind of like a GA - don't remember a thing and came round a few hours later

Thanks everyone, I am very touched. I am really looking forward to the celebrations on Sunday and having my boys back and ready to start our journey to recovery! I bought them a packet of Pink Panther biscuits and they all found them today and were gone in 5 minutes - I would recommend them for a gluten free treat!!!! I will let everyone know how it went - my youngest daughter is unwell too at the moment, bad cold/temperature - just keeping my fingers crossed that the boys don't get ill between now and then!