Full body bone scan?

[Coeliac_Copper]

had my coeliac check up a few weeks back and the doctor told me she wanted me to have a 'full body bone scan', she had hinted that she wasn't sure i was absorbing calcium properly and this is following an ankle fracture over a year ago, has anyone else had to have one of these?

[FionaGFG Administrator]

Hi Coeliac_Copper

A few queries...when you say Coeliac checks are these the ones just after your endo diagnosis? Or is this part of your regular yearly Coeliac Disease check ups?

Have you had a DEXA bone scan? I ask as NICE guidelines recommend that ALL Coeliacs have one to check there are no signs of osteoporosis. You'd think this would be very sci-fi and exciting. In fact it's rather dull and you feel like you're a piece of paper being photocopied. In these initial tests they normal scan the hip bone as that tends to show the best initial signs of any osteoperosis.

However, based on what you've mentioned ref the ankle fracture maybe they are looking at doing more in depth scans? Hence my first questions.

BTW - have you been prescribed any calcium/ vitamin D supplements by your Docs since you were diagnosed? The Docs can also check what your Calcium levels are via blood tests and it's worth checking if they've done that as well or noting what they were as others on here may have had a similar situation.

Links: coeliac.ie/health_professio...

[Coeliac_Copper]

this was part of my annual check up, i was diagnosed when i was 11, and since turning 16 i stopped seeing the paediatric gastroenterologist and now see a regular one, this was only my second check up with the regular gastroenterologist.

i've never been prescribed any calcium or vitamin D supplements and i've never had a DEXA bone scan, and i'm pretty sure it wasn't one of these she definitely said full body bone scan, which with a bit of research i have found is a type of nuclear medicine scan. I have blood tests every year since i was diagnosed and they have never got back to me with any concerns.

i'm pretty sure i don't have brittle bones i had played rugby for 7 years and my ankle fracture last year was the first bone i'd ever broke! i'm still waiting for the scan to be arranged so i have no idea when i am supposed to get it done, assuming it is a full body bone scan and not a DEXA scan.

[FionaGFG Administrator]

Intriguing! I'd say - ring up the Secretary to the Gatro Dr (you can normally get this info from your hospital website) and just check / ask for confirmation on what you're having done and what this test is for? After all it is your body and your health and it sounds as if the Dr didn't go into much detail. I'm not aware of full body bone scans. Although they may well be used in some cases. If it's definitely a bone scan not a CT Scan then it would seem they are checking to assess your bones. If you also have any recent blood test results you can often look up the ranges online and check whether you call within these as well.

It does seem very odd to me that you've not ever had to your knowledge a DEXA bone scan or similar Coeliac checks. Here's a list of the standard ones that NICE guidelines / Coeliac Societies worldwide recommend for Coeliacs.

BLOOD TESTS:

eg Yearly Coeliac Clinic Checks at Hospital or within the care of your GP

- Liver Function test

(note: in men especially high blood pressure, cholesterol can be elevated before and after CD diagnosis as CD can cause abnormal Liver function/ enzymes. Sometimes these cause no problem other times they can affect blood pressure etc)

- Cholesterol

(see above + as we often eat a low grain diet we're more prone to eating high fat meats, veggies, cheeses etc. We're not always consuming enough gf grains to reduce cholesterol).

- Thyroid function test (aka TSH and TFT)

(there's a very strong link between this and CD as they're both auto-immune)

- Calcium test

(as there's also strong research linking osteoporosis and other bone problems to CD it's important to get this monitored)

- B12

(this is often low in Coeliacs due to years of damage by the immune system. This is one to watch though. The range for this in the UK is one of the widest in the world and low vitamin B12 can = hair loss, foggy head, sore feet, night blindness, walking into doors - yep really!, burning sensations, bone aches. There is another auto-immune condition called Pernicious Anemia which is incurable and requires B12 injections every 3/6mths for life. It can cause death so it's important this vitamin is monitored. Pernicious Anemia means the body lacks the intrinsic factor in the stomach to process the B12 and therefore maintain the store of B12 we need. So if your bloods are low or boderline on this - ask why. Ensure they do tests to rule out Pernicious Anemia. Normally Endocrinologists vs your GP will be the guru on this.)

- Vitamin D

(Consider this the King of Vitamins! For Mr Vitamin D is the only vitamin that acts as a hormone in the body. Low levels of him have been linked to many diseases. He's vital to our endocrine (body power house and hormones) functioning properly.

Now - if you ask about this the common response from Drs is 'oh yeah everyone is low, lack of sunlight in the UK, yadda yadda'. However, note: Coeliacs often don't process this properly! So even if we were tanned like teak wood we'd still be deficient! Again the process for vitamin D takes place in our stomachs. So get your current level of Mr Vitamin D checked. Note: the standard level = ok is 100 and above on blood tests. Yet Drs will often say 50 is ok. Anywhere less than 50 is a problem and you'll need your levels boosting via prescribed supplements (often with calcium to aid the process in your body), or with a vitamin injection boost then supplements. Bear in mind some supplements e.g calci-chew vitamin D3 Forte are loaded with artificial sugars ie. aparatmene, isomalt, sorbitol as any good Dietitian or IBS Dr will tell you these can aggravate IBS in many patients with Chrons, Colitis etc. So as a Coeliac the same is true. You can ask for other capsules or the injection. Yet there is currently in the UK a national shortage of this so getting hold of it can prove challenging. Yet your hospital/ GP can advise which pharmacies have the most stock.

- Iron

(Important for many functions within the body. Low iron should always be investigated especially in men as there's not the monthly loss of blood to deplete iron in the body that women have. Again despite years of being GF it can take a long time for the body to get back into the swing of working properly. So even if you eat meat, spinach and take iron supplements this can still be low. Low iron needs to be watched and followed up to ensure there isn't anything else causing problems).

- Ferritin

(this is the store of iron in your body,so it's vital to ensure that this working well. If not symptoms include heart palpitations, breathlessness, tiredness)

* Worth having every few years especially if you have any symptoms

- Diabetes test

(again there is a strong link to Type 2 diabetes in Coeliac patients. Do remember than a balanced diet plus exercise is the most effective form of prevention of this).

Plus:

- Blood pressure check:

To ensure we're A-OK. Given that in essence it's easy for Coeliacs to eat as much protein, fat, sugar, dairy as we like it's important to keep an eye on this.

- Dexa bone scan:

*when initially diagnosed to ensure bones are ok and get a baseline for future.

Then aprox every 3 yrs.

- TBC if you have other symptoms monitoring your hormone levels is also worthwhile e.g. low sex drive, insomnia, weight gain, aches, extreme tiredness - in both men and women it's worth checking adrenal gland functions and hormones as high testosterone in men and women can cause health problems.

Worth asking about these at your next Gastro visit. It can be that comms between Hospital and GP breaks down i.e. GP assumes that hospital is doing these checks and vice versa so you end up in no-mans land! Click onto the Hospital Tab at the top of our page and do our survey on there. This runs through many of these.

Keep us posted. Your experience may help others as well.

[Coeliac_Copper]

blimey thank you for the detailed reply!!! Every time i go back to the doctor for a checkup they have never talked to me about my blood tests but they usually say they would ring me if they found anything unusual, so i'm guessing they are checking for all the above!

like i said above i've only recently stopped seeing the paediatric doctor and this was only my second check up with a regular gastroenterologist, the first time with him i actually had the appointment with the gastroenterologist, where as the second time was with a member of his team, who i think said she was a junior doctor, and it was her who said she wanted me to have the full body bone scan, but she did go and check with him to see if that was OK and he said yes. i think i will ring up and just make sure they got it right and also why i haven't heard anything since, it has only been a couple of weeks but i'd quite like to know when i have to have it done!

once i find something out i might blog the whole story!

[FionaGFG Administrator]

Yes - do blog the story! We need more patient stories so we can share experiences and learn from them.

Re Reply - I confess aftercare of Coeliacs is my pet obsession! I and my sister had to discover the hard way that we should be having many of these tests regularly. I would urge you to ask your GP/ Gastro doc for a print out of the blood tests (or ask what they're checking) as my experience and those of many other Coeliacs is that only 1-2 Hospitals in the UK where the consultants specialise in Coeliac Disease tend to ensure all these are annually checked.

This is understandable as so much new research and news on CD comes from within set specialisms eg pediatrics, hepatology, endochrinology, so within each specialism they may know the set tests to take yet not be aware of the latest thinking and overview. Partly this is also due to CD being classed as a 'gastro' thing whereas it cuts across Gastro, Endocrinology, Diet etc.

For example general blood tests are iron etc but Vitamin D is not a normal routine test (nor is it printed on most blood test forms - Drs generally have to write it on as an additional test). After feeling like death warmed up for a year post GF diagnosis it was only when I saw my GP and he looked on the system spotted a letter from the Hospital saying I had vitamin D deficiency and rushed to get me booked in for an injection and then supplements. So - do ask what they are testing for. One of the BIG problems with CD is that like many auto-immune diseases it can affect each patient slightly differently even whilst healing on a GF diet e.g. in one abnormal liver/ spleen in another period problems and eczema, in another aches and pains. So it really does pay to casually ask 'what blood tests' they are running.

As the renowned Colin and Justin DIY team say on TV 'To Assume makes and Ass out of U and Me'. I've learnt first hand it's best not to assume Drs are doing all the relevant check ups. No harm in asking them nicely - and often they are keen to run those tests as they're not always aware of CD aftercare and welcome patients being proactive as well.

[miacarlawilliams1994]

Heyyyyy yeahh i had too have one it's really normal for them too check it i'm 20 and had a dexar scan fines out my bones are pretty weak some on supplements calcium and vit d3.. It's just like a really weird xray with boxes.. but if im honest all they can do is give you supplements so better they catch it early but i hope all goes well Good luck