Have I been messed about?

Have I been messed about?

About a month ago I had my annual coeliac check up at my local hospital, after recently turning 18 it was only my 2nd check up with a regular gastroenterologist (as opposed to a paediatric one). Last year when I had my first check up with the regular gastroenterologist everything was fine he asked me all the usual questions and wanted to know more about what I am doing, how coeliac affects me etc..

This time around however it wasn't with the actual gastroenterologist it was with 'a member of his team', and I was greeted with the question 'so is it gluten your not aloud to eat'? Not exactly filling me with confidence anyway, the rest of the check up was the usual until she started asking me questions about my ankle (which does still cause me a bit of pain) which I fractured over a year ago now playing rugby, and she told me she wanted to get me a 'full bone body scan' (by the way that is NOT a DEXA scan) to make sure I was absorbing calcium properly. Anyway it was only later on I discovered a full body bone scan is a type of nuclear imaging method, seems a little extreme for a young man of good health.

Nearly a month on and I receive a letter from the actual gastroenterologist that says:

I understand that Dr ....... had suggested that you had a bone density scan (which IS a DEXA scan!). Unfortunately the equipment we have is not calibrated for people as young as you, thus if we did the test we would not be able to interpret it. I understand that you broke a bone playing rugby, this is by no means an unusual event and I doubt your bones are fragile.

So first of all, I was definitely told I was going to have a 'full body bone scan', and this letter says a DEXA scan which i've been told is common for coeliacs although i've never had one myself. Also, how can a machine not be calibrated for someone 'as young as me', does this mean no one my age can have brittle bones? Well obviously thats not the case so why have I not been referred to a hospital with one that IS calibrated for someone as young as me? What if someone as young as me does actually have brittle bones but cannot test for it because the machine can't calibrate to them? I really don't understand any of it to be honest and it's just left me quite confused, I don't think I have brittle bones, when I fractured my ankle I also tore 2 ankle ligaments so it wasn't exactly a soft tackle, and I had played rugby for 7 years before the break and it was the first fracture i've ever had!

6 Replies

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  • To be perfectly honest, it sounds to me like the team member actually has no idea what they are talking about and their medical qualifications should be called into question!

    other then that, I don't really have a sensible, forward thinking answer to add - I just wanted to add my tuppence worth to your frustration.

  • Intriguing...

    Call me cynical - yet this seems to be a classic case of the right hand not talking to the left hand, other wise known diplomatically as a communication breakdown! It sounds as if...and I'm guessing here.. that you saw a junior Dr who didn't read your notes and suggested the Dexa scan due to the ankle pain/ damage as Osteoporosis and other bone problems occur in Coeliacs. This is a common check and benchmark for most adults diagnosed with Coeliac Disease. It then seems that your Gastro consultant has over-ruled the junior Drs plan as you were diagnosed as a child and he / she therefore doesn't think you're at risk of bone problems. As for their answer - that seems very strange. DEXA scans that I and others have had are like big photocopiers that move up and down you whilst you lay down looking silly. They normally only focus on your hip joint for the scan so 'a full bone body scan' is not an issue - nor something I have heard many Coeliacs having.

    Perhaps what they meant by your age is that they have a setting for X-rays (via the DEXA machine) set for adults. As there is always a small amount of radiation from these just as when you have tooth x-rays.

    I think there has been a mix up in terms between a Nuclear scan i.e. type of CT scan where they test for other things and a Dexa bone scan (where they normal measure your height, weight, and scan your hip to assess any possible bone damage).

    Firstly, my personal suggestion is that you do the following:

    a) contact PALS (patient liaison) at your hospital (you can find them on your hospital website). Maybe easiest to ring them, explain the situation as above, and ask them to get a clearer answer of why you have been given conflicting information. I'd also ask why you've never had a DEXA bone scan. Even as a child who was diagnosed - now you are an adult I am sure some hospitals would do a Dexa bone scan to get a benchmark of your bone mass (and check your diet is good) and you don't need additional calcium etc. NICE Guidelines in 2009 may cover this - we can double check for you if you can't get any more answers from PALs.

    You could write to your consultant yourself yet this is often frowned upon in many hospitals as they don't like direct patient contact. Plus PALs can cut through a lot of the red tape and hierarchy.

    b) pull together your old notes / records of hospital trips and see if there was anything saying you have / haven't had a DEXA bone scan.

    It may well be that in someone who is diagnosed with CD as a child they purely monitor bloods and don't consider a bone scan important (as Drs assume that you've not had enough years or ingesting gluten for that to have damaged your bones).

    FYI: I've added the thread to your original question on this topic area for anyone who may have missed it and who wants to add comments.

    glutenfreeguerrillas.health...

    SEE:

    Page 19 of this Doc:

    "5.3 Bone health [152-157]

    In children with CD, osteopenia may be present at diagnosis.

    DEXA scans can be used to document bone density but there is no indication for routine use.Improved nutritional state may improve bone health."

    Plus

    "The role of routine calcium and vitamin D supplementation is unclear. Calcium and vitamin D supplementation should be considered in children with significant nutritional impairment, during the pubertal growth spurt and during steroid treatment. In severe osteopenia the opinion of an endocrinologist/rheumatologist should be sought."

    Source: bspghan.org.uk/documents/IB...

    i.e. It confirms that in any Irritable Bowel Disease (which includes CD), DEXA scans can be used to check bone density - yet there's no benefit for routine use. So in your case despite being diagnosed as a child it also shows that osteopenia (which can lead to osteoperois) can be a problem. In which case you can ask for a DEXA scan, albeit they won't scan you every year (nor do they do so in Coeliac adults ie. once initially then again every 3/4 yrs or again at 50 yrs old).

    This also illustrates that there is a gap in Coeliac aftercare. NICE 2009 guidelines focus on diagnosis of CD. Yet each dept eg gastro/ pediatrics has created their own 'best practice' guide which means there is often no common standard being worked to across hospitals.

    In your case the quote above shows that as bone problems can occur in Coeliac children you have some oomph to quote PALS to ask for the DEXA scan. FYI if your hospital don't have the equipment they can refer you to a hospital which does for the scans.

    Try not to worry and do bear in mind in all probability your ankle problems are due to your rugby injury - which is what the Gastro confirmed. Yet it's nice to be reassured that nothing else is happening so hopefully this helps a bit and you can ask for a DEXA scan and see what the response is. You should never leave an appointment confused - so follow up the conflicting info and let us know what happens.

    BSG: Coeliac Disease Guidance

    bsg.org.uk/sections/small-b...

    The techie bits...

    "Dual energy x-ray absorptiometry (DXA) is the most widely used test to assess bone mineral density. Bone densitometry should be checked at diagnosis with a DXA scan. The rationale for this is three fold. Firstly many patients will have had coeliac disease for several years prior to diagnosis, so there is often a significant latent period of calcium malabsorption. It is not possible to reliably predict which patients will have a reduced BMD at the time of diagnosis. Children with untreated disease have evidence of bone loss in early adulthood.

    A gluten-free diet in children results in normal bone density in adulthood. Finally, osteoporosis has a reversible and an irreversible component and early recognition of osteopaenia is vital to minimize further bone loss. The mainstay of managing osteoporosis is to identify those who are at risk and early intervention to reduce fracture risk. These strategies depend on early recognition by a single assessment or demonstration of progressive bone loss on follow up scans.

    Coeliac disease is a risk factor for osteoporosis even if a gluten-free diet is followed. Therefore women with treated coeliac disease are at an additional risk even when pre-menopausal state. Males can also be at risk as testosterone levels can be reduced with an adverse effect on bone mass. Finally it is sensible to have a baseline investigation for future comparison as consideration for treatment may depend on demonstrating an excessive rate of bone loss. If a DEXA scan is abnormal but insufficient to commence therapy then it should be repeated after 3 years. If DXA is normal then it should be repeated at age 55 years in males or at the menopause in women. Other risk factors such as steroid use, episodes of non-adherence or non-responsive coeliac disease should warrant periodic re-assessment If osteopaenia is identified, treatment should be offered as recommended by the guidelines (bisphosphonates, calcitonin, HRT) and patients should be reviewed in the appropriate metabolic bone clinic (105,106)."

    Key points:

    - DEXA scans are normally used at CD diagnosis to get a benchmark of bone density

    - GF diet in children = normal bone density in adults (so your bones are 'probably' fine as your Gastro says)

    - Having CD means we're more at risk of developing Osteoperosis - even on a GF diet!

    - Women esp are at risk even before the menopause

    - Men are also at risk ie. if they have low testosterone levels = bad effect on bone mass

    - following an initial DEXA scan if it's abnormal (only slightly) then it'll be repeated every 3 yrs

    - if normal then only repeated at 55yrs plus in men or after menopause in women

    .

  • So far I have come across, by having them CT scans, PET scans (make you radio active) heart scans and DEXA scans, I do believe the right one is the DEXA scan which measures you Hips (I believe) to find your bone density, unfortunately mine picked up Osteoporosis.

    There are also MRI scans

  • @Coeliac_copper - does this advice help? Let us know what the hospital says...

  • I think that they are spot on to want to check your ankle because coeliac are very prone to RA and that seems to affect their ankles.

    ncbi.nlm.nih.gov/pubmed/196...

    You are young but that is to your advantage because the longer a coeliac ingests gluten the more damage is done to their bodies. So I would just try and see it that you are in the system and they are looking out for you, so compared to undiagnosed coeliac you have a massive advantage. And instead of worrying I would ask the consultant or your GP.

    Jerry.

  • You need too tell them how it is, i was refused a dexa scan because of my age 20.. then i finally have it and find about my bones are really bad, if you havent had one yet don't give up because you can prevent it but you can't go back

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