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Diagnosis...or Lack Of One...!

Lynz-UK

By Lynz-UK
in Introduce Yourself / Share Stuff

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Lynz-UK Newbie
Lynz-UK
Posted

Hello everyone, I just found this forum through Google :o)

I am from South London, England, and have been unofficially Coeliac for almost two years now. I say unofficially...

Two years ago I started getting 'the runs' too often to be a tummy bug. The locum doctor I saw, as efficient as ever, said it was just an ongoing stomach bug (yeah cos tummy bugs go on for four weeks...) but nevertheless after me pushing sent me for a blood test. On the test forms we get here the doctor ticks a box for the kind of thing to be tested for, well I went home and ticked all the ones he had missed just in case there was something else there lol.

In the meantime I kept a food diary, as when I was diagnosed with IBS my proper doctor told me to keep one to see what was making it worse and better. I went on being ill then fine then ill again until Easter weekend 2006, when I decided enough was enough, damn the doctors, and went on netdoctor to see what my symptoms could mean. When it came up with coeliac, I checked my food diary and immediately noticed - runs after pasta, fine after potato, ill after pizza, pies, fine after roast dinner, etc etc. It all made perfect sense. I marched up the doctors and had a right go at anyone who would listen given they had missed testing me for this, only to find out they had done a blood test for it, one of the ones I ticked the box myself for, and it had come back showing I was strongly coeliac FIVE WEEKS AGO! Cue more yelling. I then cut gluten out for good.

Anyway, I got referred to gastroentology unit and told I needed an endoscopy. I had read online that I was meant to eat gluten for six weeks prior to this. Now I only weigh 7 and a half stone which is pretty tiny for a 22 year old, and I weighed even less then due to the coeliac issue for two odd months. So I says to my specialist 'not to be funny but if I eat gluten again you'l have me in hospital on a drip to get some nutrients in me, cos I'm pretty tiny!' and he said 'no we can't have that your BMI is almost dangerous. well just don't eat gluten and the test will show your coeliac anyway. I'll put it in your notes'. They booked my test, I waited six months for it, and then on the day I'm on the bed in my wonderfully flattering gown waiting to be wheeled in and they say 'have you eaten gluten for six weeks?' 'er no I was told I didn't need to'. 'oh, well go away and eat gluten then come back. we can't do your test today'.

This was a year and a half ago. I still haven't been diagnosed, as I can't bear the thought of eating gluten for six weeks. I know I will lose a tonne of weight and feel like crap again. Also how the heck do I hold down a full time job if I have to spend half the time in the loo?! The blood test results are still sitting on my record showing I'm strongly coeliac, and anyone who knew me at that time will vouch for the difference losing gluten has made - no longer is my complexion grey, my ribs no longer stick out, and I can stay awake for more than 8 hours! My depression is also nearly a thing of the past.

Does anyone have any information or advice at all for me as to how I can get the NHS to understand me? How can there be 'one rule for everyone?' I have one doctor yelling at me cos my BMI is still low, and another telling me to get the runs for six weeks and get even skinner! I don't even care about getting food on prescription, I just want that little tick that will get people to take me seriously! Has anyone else had any similar issues?

Thanks, Lynz :)

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dbmamaz Explorer
dbmamaz
Posted

I'm not sure how much different it is in the UK than here - but it seems like a lot of the ppl on this forum dont have a dx - tho most that were really sick do, I think. Thats too bad that your doctor gave you bad advice about quitting gluten before the test! I think your best bet is just to say I believe i have celiac due to the blood test and I am not interested in further testing. If the doctors dont respect that . . . oh, well. You're a grownup, they cant tell you what to do, they are there to do the things you CANT do - like diagnose you, prescribe tests and medicine, etc.

SO i guess the question is - what's NHS and why do you need their approval? For funding for specail foods, or just so they believe you? Certainly sounds like you do have celiac . . . so why not just tell the docs to mind their own business?

nikki-uk Enthusiast
nikki-uk
Posted

Hi Lynz and welcome :)

I'm also in London (East) and my hubby and 1 of my sons has celiac disease.

I'm sorry you've been given the run around by your docs BUT it is generally par for the course as most are terribly UNinformed about coeliac, its symptoms and HOW to test correctly for it.

Clearly, you simply CANNOT do the gluten challenge (and new studies are suggesting you may actually need to be on a gluten diet for THREE months NOT six weeks :o )

Have you explained to your GP what happened???....he knows you had a positive blood test.

Are you not under the gastro anymore???....I was thinking maybe he could write to your GP explaining that it's too dangerous for you to do a gluten challenge...but is happy to give you an 'unofficial' dx of coeliac

There are some GP's out there who will prescribe gluten-free foods without the 'Gold standard' dx (biopsy) ...but few and far in between I'm afraid :(

Another idea is to contact Open Original Shared Link....they might be able to offer you some advise OR post a message on this Open Original Shared Linkfor coeliacs...there are quite a few in your situation

Good Luck and don't hesitate to ask any more questions :)

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      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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