Coeliac symptoms - would a scan substitue for biopsy?

[tatt]

I react to gluten badly - fall asleep, no energy - so I've been avoiding it for more than a year. Had a blood test done after I had tried avoiding it for a couple of weeks but I'd reintroduced gluten for several weeks before the test. It was negative but they didn't test total IgA as I didn't know enough at the time to request it.

I don't like the idea of a biopsy and don't really want to be ill again. How long would I have to go back onto gluten for before tests and would a private scan of the gut be suitable for diagnois rather than actually having a biopsy?

You'd have to be back on a full gluten diet for at least 6 weeks for a biopsy to be accurate. An actual biopsy is the only way to be sure - a scan can't see to a fine enough acuraccy to assess the villi damage

Check out the coeliac society's website. I think you have to go back onto gluten for at least 6 weeks, maybe more for the antibodies to show up. They need to test for a broader screen of antibodies too. IME a biopsy will test if the villi have indeed been damaged - I don't blame you for not wanting to have one done. If you do, have it under a general or heavy sedation! (OH is coeliac)

Good luck.

Thanks. I can manage the diet well enough except on holiday but I've recently discovered enzyme supplementation avoids any immediate symptoms. However I am concerned that this may only be because my gut has recovered and I could be damaging it again if I use them long term. If I'm not coeliac I could happily use the supplements and life would be easier!

So I've been thinking of asking for more tests. Can you tell me what sort of consultant I'd need to see?

You'll need a referral via your gp, I think. That was our pathway.

tatt - i am pasting a message I left for you on another thread in case you did not see it

attention tatt - I have heard so many stories of people who have tested negative on the coeliac screen blood test, but who have had positive biopsy,both kids and adults, with and without any coeliac symptoms. if you are still having coeliac symptoms, its worth getting a second opinion. the test is known to be unreliable, coeliac UK will be able to advise you further

(we had to print off internet info for our GP who was unwilling to keep getting our toddler retested, thinking once tested negative, that was it. Even tho my son also continues to be borderline anaemic with no apparent reason, and has a sister and grandmother who are coeliacs, and is prone to dodgy tummy, GP said he was def not coeliac if blood test negative, but that is wrong!!DS now being retested at regular intervals - once he is a bit older DDs consultant might recommend we go straight to biopsy, to be certain)

the other important thing is that you might be relatively symptom free and allow your self a little gluten which is actually still enough to be damaging the gut and possibly causing complications like bowel cancer and osteoporosis in later life - any unexplained incidences of these in your family, anyone always thought they had IBS, or any confirmed coeliacs?

HI tatt - I have just rung the Coeliac society who told me that you can have wheat intolerance or allergy and not be a Coeliac but if you are reacting to Gluten that you would be classed as a Coeliac!

my dd had a negative blood test, the improvements in her were so great that there was no doubt that it was gluten and now she is classed as coeliacs, she is not having the biopsy as I see it as unneccesary considering the evidence. My mum also reacts to gluten and has had the biopsy which was negaitve, do what is best for you, you do not need a diagnosis.

sockmonster, how old is your dd? the blood test is known to be unreliable in under 5's - are you sure it is GLUTEN she is reacting to not wheat?

the advantage of the biopsy (takes 10 mins, DD knocked out for just 15 mins - a long time to be hanging around waiting I know but worth it I feel)anyway, having the biopsy as proof is what qualifies you for prescription foods, (free for kids too !) or do you get them anyway? Lucky you if so! The prescribed stuff is by and large better quality, flavour etc than supermarket own brands. If you do get scripts, I hope when yr dd has a different Gp they are as understanding, otherwise she is going to be spending a fortune on GF foods. It would also help her to be able to get her own kids tested more readily if they get coeliac symptoms

there may come a time when she needs to know for herself and going back onto gluten to be tested would be horrendously difficult (all symptoms magnified after a period off gluten)

being diagnosed coeliac also means she would be offered bone scans to make sure she is not calcium deficient etc

your mum being older might already be at risk of osteoporosis if she is genuinely coelaic and undiagnosed - my MIL was fobbed off for years and years told she had IBS till our dd was diagnosed coeliac. MIL is already fully GF and was told to eat bread for 6 weeks to be tested for coelaic, this made her violently ill. So GP now accepts this evidence, MIL does not qualify for prescriptions but now has regular bone scans

sorry, have jsut realised you might not even be in the Uk in which case ignore me!

I am in UK, dd gets prescriptions, really sympathetic gp, she was so ill before we took her off gluten (could be wheat) that i can't put her back on it even for 6 weeks, we did have an experiment by accident a while ago when I had been giving her icecream that had gluten in it without realising for 2 weeks an all her symptons returned.
I realise that when she is older she may need to find out for herself but right now she is finally a healthy happy little girl and I can't do anything to upset that after 4.5yrs of her being so ill.
My gran actually has severe ostioporsis so I think my mum would get bone scans anyway. both my mum and my grandma have always had what they were told was IBS, my mum is totally better on gf diet.

sockmonster

sounds like yr poor gran might well be coeliac then?

at least fro your dd you know what to do to keep her well and avoid later complications.

if you do not already have one i recommend you get the "coeliac bible" /food directory which lists all the brands of different things which are certified Gf and not produced somewhere they could be contaminated.

on the website you can also find recommendations for where to eat out on holidty etc, that do GF or are aware at least what this means!

thanks loobylou - I hadn't seen it but will look now. There is no family history of coeliac problems. My mother was diagnosed at different times with Crohns and ulcerative colitis. There is a family history of osteoporosis but as it was both parents I've had a scan and am fine.

Pretty sure its more than just wheat as I've tried things like Mrs Crimble's lovely cake with rye flour and rye crisbread.

As a coeliac, my mum is too - history of lots of digestive system cancer in the family, I can only reiterate the importance of getting formally tested and diagnosed as it does entitle you to much more (depending on where you live) than just foood on prescription. My doc sends me for regular blood tests to check all my levels etc and I've also had extra vaccs - the sorts of things old & ill people have. bone scans for oseteoporis as many coeliacs are calcium defficient and my mum has various b vit jabs too.

getting the food on prescription is a great bonus as most of the stuff in shops is grim and gets expensive.

It is also worth checking the coeliac uk wesbite for details of events in your area especially food fairs - companies are always giving away lots of free samples at this events.

Good Luck

most of the Gf manufacturers will send free samples, eg glutafin, juvela, well foods, dietary specials, see the websites for details

The trouble is most of that is crap don't let it put you off!

it won't put me off being gluten free as I feel totally diferent. However I wish I could find a way to cook gluten free pasta that didn't leave it needing a sauce!

My GP told me that blood tests were accurate even if you were on a gluten free diet, but that for the biopsy I'd need to be eating gluten for at least 2 weeks. My bloods came back "inconclusive" and I refused the biopsy as I couldn't face eating gluten (and feeling so ill) for two weeks or more.

Recently DD1 (5) had been having stomach ahces so I put her on a gluten free diet and she seemed to improve. We have been to the hospital and the bloods came back negative, so I have put her back on a normal diet. So far she seems fine, but I am still not convinced.

To answer your question, there are no scans that are sensitive enough to show gut damage to be able to diagnose coeliacs, a barium enema cn show up some damage, but not enough to give a definitive diagnosis. The only true test is avoidance and reintroduction to gauge your reaction, bloods and biopsies can both be negative but you can still be reacting to gluten all the same. Some GP's will give you prescription foods even without a bloods/biopsy diagnosis, but not all.

I find the spiral pasta cooks up well, but you have to be really careful not to over cook it! Glutafin will send you a big box or samples if you register on thier website, and thier fresh bread is lovely!!!

Glutafin pasta contains additives - god knows why! The best pastas are Rizopia and Farmo (made in Italy) and I use Ener-G lasagne sheets that I get on prescription.

tatt, glad you are feeling better!

I was blown away with the improvement in my ds health, so can completely relate (I am virtually gluten-free too). Personally, I treasure health above proving to drs that I can make my ds very very ill so once I have seen improvement, I would not continue harming him for a price of a few loaves of bread. The consultant, having seen improvement has accepted the necessity of the diet, but I can't even be bothered with the prescription foods, as I am not for bulk buying and I prefer the non-carb variey and buy things that wouldn't even be on prescription (brown organic rice, millet etc).

Crohns, US, osteoporosis are almost certainly related to gluten damage.
Awesome source of info is gluten free forum (particularly Related Disorders and Research section) - gf forum

There is a very good book that explains how various conditions/diseases are linked to gluten damage to gut that starts with how the author considered his family memebers and their diseases (Crohns, UC & osteoporosis do get a mention). This book covers it in great detail and it reads very well, quite an eye opener: Dangerous Grains

The important thing is not to look for replacements all the time, because you will be eating too much carbs, still missing out on essential nutrients. Concentrate on what you would normally have with carbs and think of carbs as a side addition rather than a main ingredient. That way you will make up any deficiencies sooner. Right now here we only use bread in emergency, 1 loaf per week at the most.

my problem is that the rest of the family don't like most gluten free food. It's also pretty hard to find foods that are gluten and nut free. So I cook more than one meal. That's fine for a time but you can get very fed up with it. Thanks for the links - will investigate them.