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If you have a regular healthcheck with your doctor because of coeliac disease, what sorts of tests/other investigations should be included?

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Hi Beckyf

The main checks your GP (primary healthcare) or secondary healthcare (Hospital Gastro team) should do are:

Blood tests:

- Anti-Gliadin

(to check gluten anti-bodies and ensure you're complying to the diet and no gluten is slipping in without you being aware eg cross contamination)

- B12* (this helps detect early Pernicious Anemia another auto-immune whereby people don't make intrinsic factor to process B12)

- Vitamin D*

- Iron*

- Ferritin (Iron Store)*

- Calcium (if on VitD & Calcium supplements)*

* these all help assess if you / child have any ongoing nutritional deficiencies due to Coeliac damage of the villi etc. This can often take a while to improve eg many years after going GF so should be checked.

**Note: B12 / Vitamin D is not always part of a Full Blood Count (FBC) check so your Dr may need to handwrite this on these on the forms

Weight & BMI:

- you/ child will normally have height and weight measured to check this is stable and within the normal healthy range*

* after the villi in the stomach heal on a gf diet (which can take 3 yrs or more depending on the damage/ length of time before diagnosis)

DEXA:

- bones scan at first appointment to check for Osteoperosis

(normally then checked again every 3 years)

- if so calcium supplements/ drugs maybe prescribed

Dietitian apts:

- you should have the opportunity to meet with or speak to the dietitian once a year

Plus:

- Cholesterol

* Any blood tests for other auto-immune problems if you or your child are displaying symptoms despite being stricty gluten free e.g Rheumatoid Arthritis, Sjorgens, Diabetes, Thyroid (TFT & TSH especially if you have any symptoms or Thyroid history in your family)

REGULAR CHECKS:

- these should be every 6mths initially and if all is well then moved onto yearly check ups

PROBLEMS:

- if a patient with CD continues to feel unwell despite not having any gluten anti-bodies (ie proving they are strictly sticking to the diet) then other tests can be explored:

OTHER TESTS: e.g. Year/ 18mths GF; still having substantial problems...

- lactose intolerance breath tests

- fructose intolerance breath tests

- SIBBO (bacterial over growth, breath test)

- FODMAP Diet (Fructose, Sugars and carbs can be complex for IBS, IBD patients to digest. Researh in Oz and finally the UK at Kings shows this diet can alievate problems eg bloating, bowel problems). Yet it does the beg the question - what's left to eat then?!

- Allergy / Immunology testing i.e. many Coeliacs produce excess histamines generally and in the gut this can cause inflamation in the body which becomes a vicious circle; inflamed>problem>more problems>inflamed etc SEE links below and our recent posts on sulphites and histamines (search tags)

- tests to rule out other auto-immune diseases

- tests to rule out other common problems (sometimes it's not all Coeliac Disease's fault after all and a bad virus can cause problems)

Ref FODMAPS

"FODMAPs are widespread in the diet and comprise a monosaccharide (fructose), a disaccharide (lactose), oligosaccharides (fructans and galactans), and polyols. Their ingestion increases delivery of readily fermentable substrate and water to the distal small intestine and proximal colon, which are likely to induce luminal distension and induction of functional gut symptoms. The restriction of their intake globally (as opposed to individually) reduces functional gut symptoms, an effect that is durable and can be reversed by their reintroduction into the diet (as shown by a randomized placebo-controlled trial). The diet has a high compliance rate. However it requires expert delivery by a dietitian trained in the diet. Breath hydrogen tests are useful to identify individuals who can completely absorb a load of fructose and lactose so that dietary restriction can be less stringent." See link below..

To ensure there is nothing else causing problems Doctors can ask for:

- a camera pill (in hospitals that offer this) which you swallow, it takes pictures of your insides and is painless and very sci-fi!

- a 2nd endoscopy to compare biopsy results to the 1st test and see that the results have improved on the MARSH scale of villi damage

- CT scan (to see other organs eg spleen/ liver etc all seem good and aren't enlarged)

- other blood tests

- colonoscopy via the bum to check there are no problems in the bowel (as the endoscopy can't reach all parts!)

- adrenal tests, sometimes Coeliacs have tried adrenal glands due to the strain of the body fighting gluten for so long

- hormone tests, as above

REMEMBER....take time to heal..

Other things to consider:

- an elimination diet in conjunction with a nutritionist or dietitian to see if other foods could be causing problems. NOTE: whilst we heal from damage done by gluten it can 'seem' as if everything upsets us. Remember that your / child's body is trying to recover, which takes time. In many cases people begin absorbing food (and alcohol!) for the first time in years. Some foods like corn/ carbs/ fructose/ lactose are harder to process than others. So what causes a problem now may not do in future.

A HELPING HAND...

Try not to strain the immune system or digestion by following these tips:

- cut out caffeine - it's harsh on the stomach

- cut out alcohol - harsh on stomach and liver

- reduce sugars / cut e.g. fizzy drinks, sorbitol, fructose

- get lots and lots of sleep (the body is recovering)

- take iron supplements if you need it

- try magnesium and selenium supplements (both help regulate hormones and boost the immune system)

- ginger tea is great for nausea

- fennel tea for digestion help

- nettle tea a good de-toxer

- milk thistle drops some people find helpful for the liver

- drink lots of water a day (at least 6 glasses) or in herbal teas

- eat fibre (or add prune juice)

- take pre and pro biotics to balance good stomach bacteria Note: wait for a few months after diagnosis so system is settled

- be wary of processed & GF foods (often high in fat, salt, sugar), at least initially try and cook yourself so you know what is in everything

*always read any over the counter drinks/ food/ remedies to ensure they don't contain gluten are suitable for you or your child

SEE ALSO:

coeliac.org.uk/healthcare-p...

allergyuk.org/fs_histamine....

shepherdworks.com.au/

wheatsurrender.co.uk/2010/0...

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