Coeliac biopsy and work

[Lambchoppychops]

Hi all

I've been diagnosed with coeliacs following two positive blood tests. I'm waiting now to have this biopsy and have been told to carry on eating gluten until then - but my appointment isn't until January.

I'm happy to delay the uncomfortable procedure for as long as possible but the coeliacs symptoms are making working life so hard - I work long hours in the City.

I'm exhausted and feel sick nearly every day.

Does anyone have any tips? I'm not happy slacking at work Need to be on the ball...

[Hidden]

Hi there, well you're in a dilemma here and I feel that you've managed so far so keep eating gluten so that you have a positive diagnosis and then are fully diagnosed. So tempted to go gf now as you must be this is not in your long term best interests. And if gluten makes you feel rough now just wait until you have been gf for a month or so and I guarantee that the effects will be much greater.

The chances are that you are anaemic and lack vitamins and minerals because of collapsed villi so it might help you to take a multi vitamin with iron supplement until your biopsy in January.

As for work just tell your employer/line manager so they are aware of your ongoing health issues and hopefully they will be sympathetic as your health should improve after the biopsy and going gf.

So in my opinion what you want to do is be patient until diagnosis and good luck as there is light at the end of the tunnel.

[Regalbirdy]

Hi Lambchoppychops

I understand exactly what you're saying regarding work. I've been in a similar situation.

Firstly you're not slacking! You're just not working at full capacity because you are ill. That's very different to being lazy. Consider it another way; if you had a broken arm, my guess is that you would feel you had the right to have a lot more sympathy from your employer - because they would be able to see a plaster cast. Would they expect you to type at a computer and work as fast in that situation? Of course not! I think that you have the right to ask for similar consideration to be given to you in your present circumstances.

As you probably know by now, Coeliac disease is a multi-system/Multi-organ disorder; because it is an autoimmune disease. When I was where you are now, I found it really affected my brain and my ability to concentrate at work. I was also sometimes so, so tired that I was only staying awake with huge effort. Having coeliac disease also caused me to have depression. However I struggled on and said the bare minimum to my employer about my problems. In hindsight, in my case this wasn't a very smart thing to do.

Can I suggest that in the short term, that you find out if your employer if has an occupational therapy department/person? If they have, then make an appointment. I would ask during that appointment if you can be given lighter duties for the next 4-5 months because of your illness. Why this long? Well your tests aren't complete yet and you can't start the healing process (or go gluten-free) until after your diagnosis is confirmed. Going gluten-free will greatly improve things but I found that it wasn't an instant fix. I was still struggling with fatigue for months after being formally diagnosed. You have to understand that it isn't quite in the same league as getting over the flu! Coeliac disease is a chronic condition, which has to be managed and healing is a fairly slow process at first.

I have to say that my then manager was pretty good - She encouraged me to go to my works OT department, but unfortunately it was after my diagnosis - and I didn't ask for enough time on light duties. I thought I would get better very fast because I was sticking to the gluten-free diet. It turned out that Coeliac disease had caused me to have number of other issues such as several vitamin deficiencies. B12 was the 1st to show up in my case. A Vitamin D defficiency was the second. It took time for these to come to light. Both are causes of fatigue - and are due to malabsorption in the gut.

I also had a similar issue to you regarding hospitals. I shortened my endoscopy waiting time by electing to go to a hospital further away. My GP got one of their secretaries to ring around to find out who had the best/quickest waiting times. I seem to remember that it speeded up my diagnosis by around seven weeks. I was grateful for that! I found eating gluten after my blood test had come back positive, got increasingly challenging and frustrating from a mental point of view. It was because I now knew what was making me ill (gluten) but I was told to keep eating it. At the time I likened it to having a headache caused by banging your head against a brick wall - but being told to keep banging your head against that brick wall. A sensible person would want to stop!

However it did give me time to say goodbye to my favourite gluten containing foods such as Maltesers, doughnuts and crumpets.

My diagnosis was almost 2 years ago now. Would I go back to eating gluten ever again? No way – I like feeling better much more!

Take care of yourself. I hope you can find a way of coping through the next few weeks. Feel free to keep asking questions. You're with people here who understand.

[Lambchoppychops in reply to Regalbirdy]

Thanks It's just a bit depressing not being able to perform as well as I know I can. I've had more results back and am iron and b12 deficient but I feel that sounds like a pathetic excuse.

[Penel in reply to Lambchoppychops]

No, it's really not a pathetic excuse. The iron and B12 deficiencies will mean that you have a reduction in the amount of oxygen in your blood stream. This will have a big impact on how well you can work.

It's helpful that this has been identified now, as it can be addressed early.

Good luck with it all. Hang on in there.

[Regalbirdy]

As Penel says, no you're not being pathetic. Far from it - you're genuinely ill!! The process involved with being properly diagnosed with coeliac disease is a big deal - both physically and mentally. It's a disease that can take a real toll on your body. It can also often happen so slowly as well, so managing below par every day becomes almost a normal thing that you have to get used to doing pre-diagnosis (but life after diagnosis does get much better!).

I really hope you have a supportive and understanding employer who you feel able talk to. I knew I was really underperforming at work - but there wasn't anything I could do about improving my output at the time. In hindsight, I really do wish I'd had the courage (and the knowledge) to speak up a lot sooner and ask for more support from my bosses - because looking back now; I really didn't understand how bad/ill I truly was back then.

Has the doctor spoke of B12 injections yet? I felt so much better when I started receiving them. The GP told me to take supplements at first but they did no good. As a newly diagnosed coeliac I couldn't absorb enough B12 through my guts. Please keep this in mind when discussing your B12 deficiency. Personally speaking, I should've pushed for injections straight away, but again I knew no better. Unfortunately part of my coeliac education process has been to learn, discuss and question everything that all doctors tell me. It helps greatly if you understand all about the decisions that are being made. It's sadly another thing that I've needed to find out the hard way.

Something I also found helpful was seeking out and using the works counselling service. Talking to someone who was unbiased certainly helped to keep me sane...!

It really is more than okay to ask for help from the people around you.

xxx

[anthonyb]

The biopsy will be the final confirmation

So hang on if you can, I agree with others who have replied, why not explain the situation to your bosses. Make them realise that once you are diagnosed and on the gf diet, you will soon improve.

All the best to you

[Hidden]

Any chance you could get your biopsy brought forward. Mine was about a month after my consultation (I didn't know they were looking for coeliac disease so was happily chomping away on bread, pasta and proper beer!) - and if you've been eating gluten regularly, you could be ready any time. Is there any chance that you might get a cancellation.

And remember: work /life balance is important for everybody - not just people with coeliac disease.

[Jacks]

Claudio beat me to it. Ask if it can be brought forward. Say you'll go in at short notice if they have a cancellation. Are the endoscopies only done at one hospital - another in your area might do it sooner.

Re iron - I've been anaemic for 10 years. I have iron infusions. I'm out of breath. It's not a pathetic excuse.