CD Reviews?

Hi, new to this...so sorry if this has already come up before. Basically diagnosed with coeliac disease in 2010 aged 23 after years of being told I had IBS...I was only took seriously when I had a mouth full of sores but thankfully got sorted. Anyway after diagnosis I had one dietician appointment and was kind of left to get on with it. At the time I didn't take it very seriously I have to admit and was not great with my diet...but after a rough few years I finally realised what damage I was doing and how it was making me feel and have since stayed very strict. Anyway for the last 7 years I wasn't aware I was ment to have regular reviews and it's only come to light in the last month after switching GPs (i didn't feel my other one had a clue) when my new gp nearly fell off her chair in disbelief that I've had no follow up appointments or seen anyone..so I've had my bloods done and already discovered in vitamin D deficient and have been referred to a gastroenterologist to discuss my current situation as my stomach seems to of completely changed and is reacting to whatever the hell it feels like....dairy...gluten free food...eggs... literally whatever I eat at the moment gives me that "stomach preparing to die" feeling. Has anybody else had this? Im just slightly worried that I've potentially let coeliac disease do its thing for like 7 years without any kind of check ups and a tad concerned it's done more damage πŸ˜‘ I've read quite alot about becoming intolerant to other foods and initially I tried to cut out lactose but this has made no difference. Has anybody been referred to gastroenterologist again whilst having coeliac disease and what did they do?? Apologies for the long story πŸ˜€πŸ™ˆ

11 Replies

oldest β€’ newest
  • I have been a coeliac 30 years,after the first biopsy I had a follow-up 3 months later.I saw a dietician once a year for about 3 years and nothing since.All the doctors I see about my various other medical problems are aware of it as it is in my notes,but it is never really mentioned.

  • Ohh see I've been advised that I should of had regular bloods to monitor my vitamin levels, bone scans and possible further biopsies to establish whether the condition was improving. My GP has advised it should be monitored to ensure it doesn't trigger any other conditions. πŸ˜‘ So I'm annoyed that my previous gp did absolutely nothing even though I've been to him with concerns that something had changed with my stomach..so I'm glad I've found someone who seems to understand the condition alot more πŸ˜€

  • Hi im gf for almost 15 months now, had significant damage on diagnosis as i am considered a silent due to no glaring symptoms. i am due to have a camera down for a second time to see if any healing has occured and if the milk allergy, which i suspect i have, despite gastro consult poopoooing the idea is causing problems other than the burning mouth,tongue and tight throat when i have it. Have cut out a lot of milk and milk containing to prove to myself its this despite having a private blood allergy test which flagged up for caesin.

    Its good that your new gp realises the importance of getting you seen again and you are able to now realise that you need to keep to the gf diet to allieviate some, if not all symptoms.

    So i guess you will see the gastro and hopefully get camera down to see how bad you are at this point in time especially as if you say you have been gf during the last seven years it would be hoped that your villi had repaired which might be why you react to other foods now. Also you should be sent for a dexa scan to make sure that osteoporosis hasnt developed during this time.

    Lots of people react to the gf premade products due to the over processing of them. You could try going back to basics and just eating clean basic fresh foods to see if that makes any difference to how your tummy feels. also people swear by the fodmaps diet where you cut out a certain food for at least two to three weeks then reintroduce to see if you react. It isnt uncommon to find nightshade foods ie. potatoes cause problems for others when healing too.

    Coeliac isnt the only part of the story for many people it throws up lots of other unexpected things too. Ask for your b12 to be done if it hasnt already, coeliacs often suffer low b12 which can cause tummy issues. Also low stomach acid rather than high which has same symptoms but needs different treatment really, but there isnt a prescribable product as far as i am aware, people use sourcraut, lime juice or apple cider vinegar to try to boost the acidity which helps digest the food.

    Good luck with your gastro appt i hope you get some positive answers.

  • Thank you for all your advice πŸ˜€ I try to eat quite fresh as I'm not a fan of most gf food substitutes but I do like my gf cereal so I've switched to lactose free milk to see if it makes any difference but unfortunately I still bloat all day and have all the CD symptoms... surprisingly I lived off like five coffees a day until about 8 weeks ago and now I cant stomach it.. literally makes me want to vomit even to smell πŸ˜‘ all very odd...someone else has mentioned the fodmap diet so I might look at that.

    I'm pretty sure they've checked everything bloods wise as they called me straight away regarding my vitamin D and ive now got to take Hux D3 once a month for 20 months which I'm hoping will improve my fatigue and aches etc.

    Fingers crossed the gastro has a solution.... Definitely not looking forward to the potential camera down my throat again as the first experience was vile.

    Thanks again πŸ˜€

  • Do you use instant coffee? Seen fb posts regarding them containing gluten, so it might be worth taking a look.

  • Hi - lactose free milk still contains casein so that could be your problem. Casein is a protein that shares some structural similarities to gliadin (gluten protein) and both can trigger the same reaction. Lactose is a sugar with a correspondingly different structure. Lactose intolerance is due to a person lacking an enzyme to process it rather than being an immune trigger. I am also intolerant of gluten and dairy and find the non-dairy milks to be an acceptable alternative. Cashew has a neutral taste and a similar consistency to full-fat milk, my daughter likes oat (be sure to seek out gluten free version) that is more akin to semi-skimmed and personally I use rice, which is again neutral but more like a skimmed milk. I don't like the nutty taste of almond in drinks and I am also intolerant of soy so can't comment on that. I use the little bottles designed for carrying cosmetics in hand luggage on planes to carry portions of rice milk with me if I am going to have a hot drink out somewhere.

    Hope you can track down all your triggers.

    Gillian

  • Diagnosed coeliac in 2012, not reviewed after first year, but have been seen by GP each year since. Supposed to have yearly review, blood tests etc., with initial bone scan and then every 5 years if no bone density problems, but every 2 years if there are problems. Australia check bone density every 2 years regardless. Helps to go well informed about what tests you expect to be done, and then make note of results afterwards to ensure no major changes. This way it's easier to see what the problem may be if there are any health issues.

    I too had a period of time when everything I ate seemed to be a problem, seemed to be giving up a different food every few days. Ended up at the GP and then hospital with Dietician. Was put on FODMAP diet, which seems to help many people. Didn't help me, made me worse. Ended up on SCD Diet, and have never looked back. From what you say it may well be worth going down GP/Dietician route, and FODMAP diet, but recommend not "trying it" without medical advice and guidance as Dietician told me at the time there is a lot of misleading information 'on the net' about the FODMAP diet.

    Good Luck.

  • Thank you for all your advice πŸ˜€ got my gastro appointment in 6 weeks so I'm going to try and get ahead of them and keep a little food diary to give them an idea of what's happening. Started today with some soft boiled eggs for breakfast as I've been advised I need a diet rich in vitamin D......first major fail..my stomach can't handle runny egg.

    I'm also going to try some non dairy milks and see if that changes the problems I'm having after my cereal.

    Just when you think you have it bad enough not being able to have gluten/wheat....you realise it could get a whole lot worse! 😴

  • Just for information, I found that any type of tablet or supplement in tablet form didn't do my stomach any good at all. However, there is a vitamin D supplement in spray form that goes under the tongue. DLux 3000 in green label container. Sorted my Vit D within 3 months, still use it periodically to keep levels healthy.

  • This is very interesting indeed. I was diagnosed coeliac at age 21 in 2004 and like yourself I didn't take it seriously. It was also harder then to find gf food and it tasted alot worse as well, food now is slot better.

    I went for a camera as I suffered a lot of heart burn and reflux but this was my only symptom and initially they though it could be a stomach Ulser. The consultant then advised me in the follow up appointment that they had taken a biopsy as my bowel looked 'flat' and found I had coeliac disease.

    I have only been religious with a gf diet in the last 2 years so over 11 years eating gluten and just put up with symptoms, but I didn't react much so I thought, oops. I do feel a lot better now but if I do eat any gluten I feel really bad now for a couple of days.

    I am now concerned as reading up a lot it seems as though I need regular blood tests and bone scans and stuff which my doctor never mentioned. I have only had 1 dietition appointment straight after diagnosis.

    I don't think I am suffering too much now but I do seem to get what I think is glutened through possible cross contamination but now think it.might be something else like milk.

    I suppose my question(s) now is if I phone my local gp surgery, what do I say and what do i ask for? And are they likely to take my request seriously? Never liked going to the doctors and always tried to avoid it.

    Think I have now managed to make my story longer lol πŸ˜‚.

  • Just a comment on Lactose, until brush borders of villi where carbohydrates are digested, heal one can have trouble with milk,..... and another curious thing vit B6 deficiency often persists in female but not males after being gluten free for coeliac disease, ..... hope the camera tells you where you are as to healing and as suggested try going back to basic gluten free foods, the free from foods have so many additives now,

You may also like...