Which post diagnosis blood tests/check up should I get?

[rarchy]

Hi guys

I have very recently been diagnosed with celiac. I am waiting to see a dietician as I have been referred by the gastroenterologist, so I called the hospital today and they informed me that they don’t know when I will have an appointment and it might not be until mid-June (typical slow NHS…) . I was really hoping to see someone sooner as it is such a life change, and one of my main concerns was checking for nutritional deficiencies or other potential issues as a result of celiac (although not even sure if this will be the dietitian who takes care of that?). Anyway they said I can request blood tests with my GP in the meantime if I like, so I wanted to see what tests I should request ( I would hope my doctor would know, but you always seem to hear stories about (non-specialist) doctors not fulling understanding celiac so figured its better to go in prepared)

I’ve looked online and found some recommendations for the below, please feel free to add to this or comment on the ones I have put:

Folic acid

Calcium 

Iron

Vitamin D

Vitamin B12

Zinc

Test for osteoporosis 

bowel or rectum examination?

 

Thanks for any input!

Rachel 

[cristiana]

  On 5/2/2017 at 1:34 PM, rarchy said:

 

Expand Quote  

Hiya Rachel

I was diagnosed in 2013 and have tried my best to follow a gluten-free diet ever since.  These are the tests that I have had.  I've marked with an asterisk those I had privately because I didn't want to wait in the  NHS queue (through an accredited nutrionalist), although you should find the NHS will offer you iron and B12, and a bone scan, quite readily.

My NHS nutritionalist was fine, but I think I got a lot more from a private one (cost me about £90  for a total of two sessions).

Folic acid - NHS tested me this, but they didn't do it immediately.  Definitely make sure they test your levels, mine were not tested for a long time and they are low.

Calcium - I didn't have this blood test. However, you will probably be offered a bone density scan.

Iron -  yes, they should offer this routinely. 

Vitamin D -  If you can get it through the NHS, go for it.  It wasn't offered to me.* 

Vitamin B12 -  Yes, I had this test, but needed to ask for it to be repeated. Also had it done privately;*

Zinc - I don't think I've ever been offered this one

test for osteoporosis - see calcium. 

bowel or rectum examination - I was offered a sigmoidoscopy after still having pain after going gluten free, then dairy free.  But they wanted to wait a while to see if going dairy free would help.  Obviously if you are in a lot of pain or have symptoms like bleeding you need to follow this up proactively.

I had a lot of tingles and buzzing (neuropathy) so if you have that do be sure to mention it as they will probably offer more tests, particularly B12.  I also found magnesium supplementation helpful for this, but was not tested for a deficiency.

Hope this helps.

Cristiana

 

[rarchy]

Thanks a lot for coming back to me Cristiana. Hopefully I will be able to get all of those on the NHS, if not good to know I can go private - if you don't mind me asking how much were the private tests and where did you go? I will also add magnesium to the list.

I don't have massive issues bowel wise but I would like to get it checked out, I think a lot of my symptoms down there were celiac but I would feel safer knowing its all been looked at. I just hope I don't have to have a colonoscopy ? I did give a stool sample a while ago when they were first checking me for celiac as the consultant wanted to check for other things, although he didn't say what specifically and I didn't hear back so assumed the results were all fine. 

Fingers crossed my GP is understanding when it comes to celiac, the original GP I saw has left so I have no idea who I will be seeing and what they are like. 
 

[cristiana]

Open Original Shared Link

I'm not sure where you live in London but it might help to have a look at this website to try to find someone locally. My private nutritionalist is a member of this organisation.  (The professional body for registered nutritional therapists.)

Seeing the nutritionalist cost, from memory, £65 for the first visit, and then there was a follow up a few weeks later which was much cheaper - something like £35 (but a much quicker visit).  The blood tests from memory were something like £25 for the B12, £50 for the vitamin D, but I could be well off with those figures, it was a while back....

With colon issues, if there is family history of colon cancer you will get prioritised, so mention that to your GP if you have had someone with colon cancer in the family. In my case my mother's brother had it, and it helped with the referral. 

You may not need a full colonoscopy.  A sigmoidoscopy looks at the descending colon, on your left hand side, but useful if you have pain there.  A colonoscopy would obviously be reassuring if you have pain in other places.  

Going back to your GP, I suspect they may ask you if you have tried going dairy free for a while. You probably know this but while coeliacs are healing they often need to cut out dairy for a few weeks/months. This is because lactase, the enzyme responsible for dealing with lactose, is produced by the villi in the gut. You may find that you could have  bloating/pain/maybe diarrhea until that healing occurs - although it by no means affects everyone in that way.  

When the villi in the gut has healed, often it can cope with all that lactose again.  

Have you joined Coeilac UK? Might be worth it for the first year.  They send you lots of information about what you can and can't eat and there's a magazine every few months. I'm not a member any more (watching my money) but it was a great help initially

C

[rarchy]

Thanks Cristiana, I will have a look at local nutrionalists (the search function doesnt seem to be working at the moment). Hopefully I'll get to see an NHS dietician soon so I can then know what else I need to see someone about. 

I don't have anyone in my family with colon cancer so will see what the GP says. I am not too worried about it down there, but it would be good to have peace of mind. 

I have noticed quite a few celiacs are dairy free, and also read suggestions for doing it in the initial stages like you mention. I have gone dairy free now since a few days (goodbye cheese *sniff*  ) so will stick to that and see if it helps. I also have moderate acne which I have always had, the pill was the only thing that cleared it up but I had to stop taking it last Dec for various reasons and so my skin has got bad again, so I am hoping that going gluten and/or dairy free will help with this. It hasn't so far!

I'm also cutting out as much processed food as possible for a few months to try to help my gut and hopefully heal quicker and get some energy. Although I am not being 100% strict, i.e. I had some popcorn at the cinema today, but in general most of my meals are made from scratch now. Hopefully I'll stick to it in the long run apart from the odd treat!

Yes I have joined Coeliac UK, I just got their magazine which had useful info and their website has been really helpful too, plus it has lots of recipes which I need to check out!

[cristiana]

  On 5/7/2017 at 8:51 PM, rarchy said:

. I have gone dairy free now since a few days (goodbye cheese *sniff*  ) 

Expand Quote  

Actually,  you may find you can tolerate small amounts of hard cheese like cheddar, even now.   Something happens to the lactose in cheese - can't remember what - which means it is much lower in lactose than say a pint of milk.

Hopefully I'm not spouting a load of nonsense here - please, scientists reading this, can you explain this better?

[RMJ]

  On 5/9/2017 at 5:37 PM, cristiana said:

Actually,  you may find you can tolerate small amounts of hard cheese like cheddar, even now.   Something happens to the lactose in cheese - can't remember what - which means it is much lower in lactose than say a pint of milk.

Hopefully I'm not spouting a load of nonsense here - please, scientists reading this, can you explain this better?

Expand Quote  

During hard cheese manufacture most of the lactose is broken down into its parts, galactose and glucose.  These do not cause the same digestive problems as lactose.

[cristiana]

  On 5/9/2017 at 6:13 PM, RMJ said:

During hard cheese manufacture most of the lactose is broken down into its parts, galactose and glucose.  These do not cause the same digestive problems as lactose.

Expand Quote  

Well done!  Thanks so much for that.  

And so rarchy, some good news!

 

[rarchy]

Thanks guys, thats good to know!