Hospital appt after diagnosis

hi there,

I'm still getting my head together after a diagnosis of coeliac. I had a biopsy recently and had a call from the GPs earlier this week saying that the results showed I had coeliac, and I should wait for the local hospital to get in touch.

Any idea what happens at this next appointment? And any suggestions for questions I should ask?

It's stupid to be surprised but i did rather assume they would say it wasn't coeliac (I had very low borderline blood test result which prompted the biopsy) and have surprised myself by being rather fed up about it (i thought i would just be relieved to find out what it was after all these years/decades).

Any advice? Thanks in advance

Tillyxx

17 Replies

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  • Hi Tilly,

    Glad to hear that you've finally got a diagnosis but I'm sorry to hear that it wasn't the news you were hoping for.

    I was diagnosed with coeliac disease is nearly 4 years ago now. Unlike you, I didn't receive the news over the telephone but at the hospital appointment you are still to have.

    For the record, I am still shocked and appalled at the way some clinicians think it's okay to give this sort of life changing news over a telephone (I doubt if they do it for conditions like MS or cancer etc!) and you're not the first person I've encountered who has been treated this way.

    Rant now out of the way, I would suggest going gluten free again (if you haven't already) before the appointment. Do so on a day of your choosing. I found that choosing to go gluten-free on my terms was easier than having it imposed on me by a hospital and allowed me to ask more intelligent questions (I also haven't looked back since that day). You will need to be 100% gluten free for life (no slip ups!) to have any hope of becoming well, so if you have any unfinished business with any gluten containing foods, now is the time to have them one last time - to make your peace with them.

    Don't be too surprised if you go through a type of grieving process in the next few months. Experiencing psychological difficulties on being given a coeliac diagnosis is actually quite normal. If necessary, seek counselling about this – I did and it helped me a lot.

    Ask to see a dietician. It can be a frustrating experience but they may have a couple of nuggets of information that could be useful to you - and they will be clued up about the prescription provision for GF food in your area.

    Join Coeliac Uk. Sign up to their peer2peer mentoring support service. They try match you with someone in your area who understands where you are coming from and is savvy about local restaurants etc.

    Finally, just keep asking questions. Especially when eating out. If you aren't 100% sure that the person serving you knows what they are talking about, don't eat there. I learned this one the hard way... :-s

    Good luck at the hospital.

    R.B. xx

  • thanks RB - that made me a bit teary (but probably in a good way). I'm very surprised by my response to be honest. I thought I'd be delighted to find out what's been causing all the trouble, and in all honesty I know it's great that it's something that is mend-able (is that a word?). I think my worst fear was yet another "we don't know" and I do feel for everyone that gets that result.

    I'm just surprised to find myself upset to be honest. Aren't humans weird?

    Will I get any idea at the consult how bad the damage is? I've had trouble since my teens, am now 53? I guess that will give me a better idea how long things will take to get back (hopefully) to normal.

    I went GF straight after the biopsy (even refused a normal biscuit - was so fed up with endless immodium by that point). So I think I've said my goodbyes - I'm just surprised to find how hard it is knowing there's no option. I had every intention of staying off the gluten (as I know it really doesn't agree with me), I guess I just thought if it wasn't coeliac i could allow myself the odd slip-up (probably not true, i know).

    It's easy enough at home (even with a gluten-consuming child in the mix). At the moment I'm struggling to become the person who has to quiz my mates at bbq etc. or take my own food etc.

    On the plus side, I suppose one day I might have a normal(ish) body :)

    thanks again - I'll take your advice re Coeliac UK, and the dietician - might even do it about the counselling ;)

    Tillyxx

  • When I got my diagnosis, it was quite a relief - the thing that was making me feel so crappy did have a name. It was also nice to know that it wasn't all in my head!

    I'm not at all surprised that you are upset. It's a very valid way to feel following diagnosis. I think I was also in shock at first.

    Btw, try not to murder any colleague, friend, or relation who forgets and offers you a piece of regular cake etc. This can be difficult though!

    At first I found the whole change over process to be quite isolating. Yes, I also have been through the mate quizzing process - so I know what you mean…! Thankfully I have some very understanding friends and family who were willing to adapt to my needs. My friends for example, accepted that it was much easier (and safer) for me to go out for a drink than for a meal. They then had to learn not to order soft drinks on tap due to the potential risk of cross contamination.

    I think the hospital should be able to tell you about the damage they found when the biopsies were done, so try not to worry about it.

    Ps. Just entering the free from aisle in the supermarket means that you will put on pounds around the waist! You have been warned!

  • I so relate to the "all in my head" comment. Or especially other people's feelings that it's all in my head (I have spent so many decades with people referring to my "stress-stomach", when I was actually feeling really quite happy). I will try not to wave my official diagnosis too hard in their faces :D

    thanks again RB (and the warning has been taken on board...)

    Tilly

  • In all honesty i cant see why your gp is sending you back to the hospital, surely you have had a diagnosis and now it is up to your gp to get things on the move.

    when i went for my gastroscopy( i had had bloods taken previously) i was told there and then that i was coeliac and this was just to confirm it. I suppose i could call myself unfortunate because i am called a silent coeliac- i had no defining or constant symptoms, just a general soreness at what would be the top of my stomach. Loads of other things all happening within a three/four year time span though. No one i saw could give me any difinitive answers or connect any of it together though. Only my b12 deficiency made sense.

    So from that day on, i have been as far as possible, gluten free, i cant even say for definite if i have been 'poisoned' from unknowingly eating it.

    The worst of it for me is not finding a decent bread at the beginning. I dont eat it every day but when i did i liked a really good loaf- that doesnt happen any more, which is probably the saddest of this condition. Eating out is still a nightmare! Dont get me wrong i like jacket potato but three times a week! Lol. when i remember, i put a few slices of bread in a box to take out with me just so i can have soup instead. Who would have thought that so many soups are now off limits.

    As a family we would eat a varied and fresh diet so that hasnt altered much for me. Gravies have become more expensive due to brand. Homemade stuffing is Not the same! Lol. cant get my yorkshire puddings to rise- but i never could beforehand either lol.

    Food shopping takes so much longer now, having to look at all the labels is so time consuming, but you will find that once you have sorted which you can and cant have it will be easier. Some supermarkets are much better than others with their supplies of gf foods. You will need to look in all of them at the start- my local asda is so much better than tesco but my morrisons keeps gf fresh and frozen in the same isle, but m&s has such a tiny dedicated section and the rest is just on the shelves making no distinction at all. I dont online shop but ocado has a massive selection of gf foods.

    When i was first diagnosed, i read loads and loads about it and thought it was a lot of exageration- people needing more kitchen space, f/freezers, toasters, deep fat friers etc Now it makes sense, two of everything! Be that flour and other baking products to frozen roast potatoes or chips, loads of them have coatings on that make them forbidden fruit. And yes i now have two f/freezers and am having to have another cupboard put in. A small toaster sits forlornly waiting on the side too. Im just fortunate enough to have the kitchen space to do it, at the expense of losing the table and chairs lol, now squashed into a corner.

    By the time i got to see the consultant again i was totally gf and had had my appointment with the dietician prior to seeing him.

    Personally i cant say my dietician was much help- felt like i was telling her what was what.

    The consultant will tell you what damage has been caused if you ask- apparently mine was described as significant! You will more than likely now have annual gastroscopies to see how/ if your gut is healing- can take years!

    Depending on your location-( some areas dont)you should be able to get some foods on prescription. You will need to go to your gp to sort this and if you are lucky enough to have this service still available i would recommend getting yourself an annual prepay prescription certificate.

    I have been on this journey for less than four months, so it is still very new to me.

  • Try the Coeliac Map for places serving gluten free food or google your local Coeliac group. Most chains now have a range of gf foods, so jacket potatoes can be a thing of the past.

    coeliacmap.com

  • You will probably be seen by someone from the Gastroenterology Team or an Upper GI Specialist Nurse, people who deal with digestive disease problems. You will be referred to a Dietician who will explain how to stick to a GF diet. All diagnosed coeliacs at the hospital where I work are advised to get a copy of "Gluten Free for Dummies" (make sure it is the UK version) it is a good book for newly diagnosed coeliacs. They are also advised to get all first degree family members checked.

    I think most of us were probably fed up when we got the diagnosis. In the scheme of things it is not a dangerous disease and is easy to manage when you get the hang of it. My little brother died from pancreatic cancer so that helped me put having coeliac as a into perspective. I could have had something worse. I always carry some Immodium Fast Melts in my purse in case I get glutened which happens to most coeliacs now and again.

  • thanks Lisahelen and violetkathy - it's good to get an idea of what might happen. I also expected just to be told to give up gluten and didn't expect a hospital appt at all after diagnosis - tho be nice to have some sense of how much damage etc.

    We also lost a brother and both our parents very young so i had a lot of fears about what my problems were... so I expected to be over the moon it was something so relatively unscary. I've been rather surprised that my immediate relief has passed quite quickly to be replaced by feeling rather daunted (she says looking around her at a kitchen which seems utterly covered in breadcrumbs after a visit by 8 family members :) ).

    good tip re coelic for dummies will get a copy now

    Tillyxx

  • hmmm - there seems to a "coeliac for dummies" and a "living gluten-free for dummies" which is a good few years newer - any thoughts on the best one? Thanks again for all the advice X

  • Hi Tilly

    I would suggest the "living gluten free" one. It is very useful.

    Feeling daunted by the idea of gluten free is definitely something we can all relate to. When it comes to family or friends visiting you will have to decide what will work for you, to avoid cross contamination. Once our children had left home we downsized, there was no room in the kitchen for a separate gluten free area, but my husband was quite happy to be gluten free at home with me. Friends and family know that they will eat gluten free when they visit.

    Thankfully there are a lot more gluten free options available now. I buy alternative flours etc on line, as it tends to be cheaper. As RB said, the "free-from" foods in the supermarket are often fattening, they can be loaded with sugar and some of the additives used can upset a delicate stomach. Probably best to stick to plain veg and protein to start with.

    Good luck Tilly. It can take some getting used to, but it's worth it.

  • Thanks penel. I had a cathartic day yesterday chucking out ancient kitchen equipment, spices that must have been open a decade, etc. We have a 7 year old at home and not sure about making her go GF too (husband would be fine) so mulling it all... Will buy the book now xx

  • Perhaps ask the consultant about testing close family members?

  • good point Penel :( do you know does a niece count as higher risk than normal? My 30 year old niece has struggled for years with "IBS", i know is keen to have kids as soon as possible, and would hate her to go through the years of miscarriages that I did (tho of course I can't know coeliac was a factor). I'll ask the consultant, good idea. Tillyxx

  • I would think that a niece could possibly be at higher risk, for close family members the risk can go from 1 in a 100 to 1 in 10.

    NICE guidelines now advise eliminating a coeliac diagnosis before labelling problems as IBS. Even without a diagnosis it might be a good idea to try cutting out gluten to see if it helps?

    coeliac.org.uk/healthcare-p...

  • Hi Tilly

    What great responses. I have been reading them avidly. Well done all. Your post Lisahelen was chock full of tips and pointers but positive with " there is life after diagnosis." I am having a ct on Friday to confirm Coeliacs. I have already had the wind knocked out of me by the possibility and I know dont trouble trouble, til trouble troubles you, but I have Lupus, AIHep, Menieres, Sjogrens and possibly Pernicious Anaemia but this would have such consequences. My poor hubby does everything and to add to his shopping burden and cooking really has upset me. Then telling my son, and suggesting the test...

    I appreciated the mourning comment and realised that they were spot on, thanks.

    Oh well, on with my "cleansing diet" though it is full of everything that upsets my tum. It is so hard to willingly poison yourself day after day.

    I will get an appointment, who knows when, for the result. Big question... can I go gluten free on Saturday? Or if the actual words are not said what then. I have 9/10 symptoms on Coeliacs site and have had antibodies blood test. Autoimmune is running wild inside me, as you can tell, at the moment so you see where my expectations are from.

    Sorry to moan on, this has hit me more than any of the others as its just me, getting on with it, now...

    Well I'll shut up, but thanks Tilly for your great post, and thank you all for your positive and informative responses, they have helped a lot.

    Regards

    ⚽️

  • they are lovely on here aren't they footygirl? (great name btw). I went gf the minute they'd done the biopsy (as was sick to death of it, and had 4 days at a festival coming up - you can picture the scene with the queues for the loos... :D ).

    Really don't apologise for "moaning on" (you weren't anyway) - and anyway if we can't moan here where can we? Tillyxx

  • 😘😘

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