GI Appointment

[Mmmm]

I had an appointment with a GI consultant on Thursday. What a waste of time. He asked how I felt, had I had diarrhoea, do I ever have to go to the toilet in the night. Told me I would have to have regular bloods done. I asked when they would happen and he said "might as well do them today" so I had ferritin, float, B12, FBC and calcium - all of which had been done by my GP a few weeks ago and were all fine (the results were right in front of him on the computer). I asked how they would know if I was doing the diet 100% and was toid that I would know by how I felt. I thought I would have bloods to give an indication - I know that the paeds do that.

I believe I'm supposed to go back in a year's time - but it will be to see a different doc. Think I will just give it a miss ...

BTW - Overall I'm feeling a lot better, despite the fact that by bones really ache especially when I am in bed and when I get up in the morning. Thanks everybody for your input.

[Liana]

I have regular blood tests done all the time, but they're to check to make sure my kidneys and liver are doing. The ferritin relates to your iron which will tell if you are eating gluten or responding to the gluten free diet. It's well known that iron drops in the pressence of gluten in the diet. B12 will tell them about phase 2 liver function. The liver is your filtration system to get rid of toxins like gluten. The tests I have done every year are to make sure no cancers are developing in the damaged bowel. Going once a year is very important to maintain your intestinal health and prevent other things from developing.

[Mmmm]

The implication was that my GP would do the bloods which is fine. She's really clued up on CD. She did far more tests anyway than they did at the clinic like liver function etc. All the regular tests like FBC get done on a regular basis at my diabetes clinic and my GP also does regular tests too - and they have always been fine.

I suspect bloods don't get done routinely at the GI clinic anyway as there was no-one there capable of taking blood and they had to go and find somebody from another clinic.

My GP said that the dietitian is more important than the GI consultant. My concern is that I wasn't told how often I need the bloods done and that the only answer I got to my question"How do I know if I am getting the diet right" was "if you feel OK".

[Maqh]

Hi Mmmm

My gastro consultant dumped me a few months after I was diagnosed - seems once you are defined as coeliac they lose interest! I get regular bloods done by my gp who is pretty switched on. Though he's more interested in my thyroid than cd at the moment, he does do full bloods as well. I asked if they checked for gluten antibodies as well as everything else and he said they didn't if the gf diet seems to be working, but they do check everything else. I was told my bloods should be done at least once a year, but like you it's a case of if you feel ok the diet is fine. I know it's not a lot of use but believe me you will know if eat any of that horrid stuff gluten, it may take a while but you learn how to read your body (I hope that makes sense).

Interestingly, when I was first diagnosed I had terrible bone ache just like you - in bed to the extent of not being able to sleep at time and first thing in the morning. This is not so bad after 3 yrs, though it still happens sometimes.

[Mmmm]

Thanks Maqh. I would have been more upset if I wash't feeling better. I just felt that he didn't want to give me any information - and wasn't that interested.

I will ask my GP about the bone ache. I'm post-menopausal but did have a DEXA scan about 10 years ago when I broke my wrist and it was fine. (I had to ask for it though).

[FionaGFG Administrator]

Mmmm You are right in that sadly many coeliac clinics (often nurse led) or consultants there just think you have to go gluten free and all is well. Instead of screening for other auto-immune conditions associated with CD (like thyroid) patients are often left to rumble on alone. It's good that you have a clued up GP. FYI the tests they should be doing annually as recommended in the Gastro society guidelines in the UK are:

folate, ferritin, iron, B12, VitaminD, calcium, Cholesterol and antibodies to gluten (ttG)

Weight taken & height taken at each appointment annually

DEXA scan at diagnosis (of hip bone) to test for osteoporosis

The antibodies to gluten blood test isn't 100% accurate i.e. it can be 0 for gluten intake and anti-bodies but you can still have damaged villi. The ideal is that Drs wish to see your level as 0-3 after diagnosis. This can take at least 6mths on a GF diet to be achieved.

Although these appointments can seem a bore - it's worth going to them as you can at least try and change the system from the inside and raise issues. I often feel the same as you.

[Mmmm]

Thanks FionaGFG - that is some of the most useful info anyone has given me about what I should be receiving from my healthcare team.

When I met the dietitian she didn't weigh me just asked me what height I was (don't think she asked about my weight) which is weird but I had just been at the diabetes clinic 2 days before so it might have been in the computer.