Is it too late? Celiac/coeliac UK

[harry17]

So I'm 26 years old from the UK and for the last 4/5 years I have been having diarrhoea multiple times a week , constant pain in my stomach , my bones literally hurt just doing simple things like sitting down/walking around , going out the house or work is absolute hell because I could feel fine then within a few seconds I have this searing pain in my stomach then I have diarrhoea straight after.

Recently I've noticed the pain & diarrhoea has gotten a lot worse I'm having diarrhoea around 4/5 times a day with a fair but of blood in my stool. I can't even prepare dinner or breakfast because the sight of food/smell of cooking makes me start the hurl and brings me close to being sick every single time.

 

Over the last 4/5 years I've been told there is nothing wrong with me by doctors and my symptoms was because of poor diet and anxiety.

I had multiple blood tests , colonoscopy , put on countless medication & pain relief and because my GP/doctors have never been much help I've just lived with it , pushing through to pain and continuing to work full time never taking a sick day.

I had a blood test around 5 months ago and they said it was flagged for "celiac/coeliac" but I would have to see a specialist to get a certain diagnosis and I would receive a appointment "soon" and because 5 months later I've not heard anything flr the appointment I called the hospital to find out how long I will be waiting and they told me I'm on a waiting list and my appointment won't be for another 9months ???? Even though I've told them how much pain I'm in , the blood , the throwing up , the pain....... And they said I still have to wait.

 

So now I'm about lost on what to do😂I can honestly say I feel like I'm dying , my insides feel rotten and I am really really struggling to carry on (no this ain't a cry for help) I just feel so lost and have such a hard time finding happiness at the moment where I'm in so much pain and discomfort.

So my question is...

Are there anyone on here that are from the UK that have had similar issues to me and if there's any advice about my whole hospital appointment situation ?

Thanks in advance!

[Scott Adams]

Welcome to the forum, and I'm sorry to hear about how badly your doing right now, and how unconcerned your doctor(s) seem to be (it might be time to get a new doctor!).

One of our moderators is @cristiana who is from the UK, and hopefully she can chime in here with more info about how you can break the medical gridlock you are facing.

Your story is very similar to mine, as I went through almost exactly the same thing at around the same age. 

The good news is that there are some things you can do now which may help you feel much better, for example go on a 100% gluten-free diet using info in the article below, and if you feel relief by doing so simply stay on it. I mean, it seems like you've tried you best to work with an overloaded medical system, but continuing to try to get a formal diagnosis may not even be necessary at this point--your health and recovery are the most important thing at the moment.

The next step would be to get a copy of any and all blood test results that were done for celiac disease. You should be privy to them, and if you can get those please share them here. I suspect that since they implied that you need a follow up with a specialist, presumably due to your results, that the answer may already lie in those results.

Last, keep on hassling the doctors--I'm not saying give up on them--and if they schedule more tests for celiac disease we are likely looking at an endoscopy to confirm a positive blood test, then you can simply eat a couple of slices of wheat bread for two weeks before that test (or not...if the diet works, perhaps you won't want to touch the stuff again!).

Last, keep a food diary to see if you can link any ongoing symptoms with things you are eating.

 

[trents]

24 minutes ago, Scott Adams said:

 

You can also order a home celiac test kit from Imaware and others for about $100 US.

[cristiana]

Hello Harry

I'm sorry I didn't see this sooner - I'm snowed under with other stuff at the moment so not on the board much, but I've asked Scott to let me know if anyone from the UK posts who needs help, so you are that first post (the system is working, @Scott Adams!)

I can relate to a lot of your issues and I am so sorry you are going through it too.  Before diagnosis I had blood in my stool.  In my own particular situation it was caused by a fissure caused by severe diarrhea, a situation exacerbated because my GP put me on a strong iron supplement which disagreed with me.  The bone pain I totally relate to as well, and burning stomach pain.

Unfortunately in the UK the NHS is overwhelmed, with Gastroenterology Departments playing catch up because of the various lockdowns.  So your wait is not, unfortunately, uncommon. 

But this may interest you - have a read, particularly para 4.

https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/

If you have a good relationship with your doctor, you may wish to chat to him/her about this and show him/her this link.  They may then be persuaded to follow this route i.e. if your antibodies were very high first time, and are with a repeat test, you might not need  to have an endoscopy.  

Also - if you are taking iron and you think, like me, it is worsening your symptoms, ask your GP for a gentler iron - like ferrous gluconate, or Floravital syrup which you can buy from Boots (don't by Floradix, it has gluten in it!)  And it might be worth trying to avoid dairy as a lot of coeliacs have issues with dairy until their guts heal - it made my diarrhea a lot worse, and even to this day it has a slightly laxative effect (sorry TMI!).

And one more thing -  I get gastritis if I am glutened (the sore stomach I mention).  I have no idea how common this is, but you may wish to look up a gastritis diet online, as it might be helpful to eat things that are gentler on your stomach.  

Although no-one would blame you for giving up gluten now, and forgetting about the testing, it is worth bearing in mind  in the UK there are benefits in getting medically diagnosed (and on this,  note Coeliac UK advise people not to go down the shop-bought kit diagnosis kit).   Because once you have that formal diagnosis, depending on your local health authority, you should get lifelong free access to an NHS dietician, DEXA bone Scans (osteoporisis can be an issue in coeliacs) and annual blood tests and monitoring.   

If you do have to wait 9 months, Scott's suggestion of coming off gluten for a while and then taking it up for two weeks prior to the endoscopy is another solution.  Bear in mind, though, that for another positive blood test if you have already given up gluten you will need to eat two slices of bread for about six weeks.

I guess there is one other route:  a private endoscopy.   It will hurry things up, but of course, it will be expensive. 

Sorry for the ramble, but hopefully something is of help. Do come back to me if you have any more questions.

Cristiana

 

Edited May 6, 2022 by cristiana

[Jackie Garrett]

Hello Harry

Your in the right place here with lots of good advice from people, when I discovered what was affecting me it was truly life changing and a huge relief, in my case it was Dairy and things that had Starter Cultures in, fermented things, I couldn’t tolerate acidic things so many of our drinks are acidic, I drink mainly water and herbal teas, honey and Lemon, Lemons are Alkalising, just keep your acids down, I would speak to a Dietitian for advice, Gluten and Dairy are so many peoples triggers, but don’t cut them out until you’ve been tested or your results will not be true, you may be ok with Dairy, I really wasn’t, and yes like Scott mentioned a food Diary is the way to go.  Maybe buy a cookbook on Alkalising food recipes. Good luck Harry, if the wait is too long maybe go private if you can.