Anyone who knows about coeliac - I need advice please

[LadyGlencoraPalliser]

OK ridiculously long post here, but I really need some advice.
I have suffered from what I thought was IBS for quite a few years now. I was suffering really bad attacks that lasted for a few days but erratically - they would go away for a couple of months and then I might have a few in quick succession.
My main symptoms were severe pain, bloating, wind and constipation.
Anyway three months ago a light finally went on in my brain and I realised that bread and pasta could be triggering the attacks. I had tried excluding other things in the past, dairy products, caffeine, alcohol etc but to no effect. When I gave up wheat I started to feel better and after a couple of months I felt completely back to normal. I tried eating rye bread as a substituted but that triggered an attack so I decided to go gluten free. A few days ago I accidentally ate some chocolates with wafery stuff in the middle and bingo - another attack.
I had also suffered from really debilitating exhaustion over the past few years which I didn't connect with the IBS, but that disappeared when I gave up wheat and reoccured this week.
Anyway it had never occurred to me before that my symptoms might fit Coeliac disease as well as IBS, because I thought that Coeliac would be diagnosed a lot earlier in life. I also thought that one of the main symptoms of Coeliac disease was losing weight which I haven't done. However I recently looked on the Coeliac UK website for info on gluten-free eating and was surprised to find that I have quite a lot of the symptoms it lists: including tiredness, anaemia, mouth ulcers, depression, joint pain and numbness in fingers (neuropathy).
What I am wondering is, is it worth going to the GP and asking to be tested for Coeliac? I gather that will mean having to go back to eatin gluten for six weeks in order to avoid getting a false negative on the test, something which I really dread doing.
Or is there any other way of finding out what is going on without having to do that?

yes, def sounds like it could be coeliac to me, you don't say how old you are but when my dd was diagnosed at the age of 5 due to being shorter than average, and initial blood tests showing her to be very anaemic (despite good diet), her teacher and her teachers sister were both just in the process of being diagnosed in their 20's

many people are NOT picked up in childhood.symptoms can start at any age, can be triggered by a major stress such as divorce, bereavement etc. I think coeliac UK say more over 60's are diagnosed each yr than under 16's. The TV presenter Bob Holness was diagnosed in his 70's

once dd was diagnosed we then knew what MIL's trouble was, exactly as you describe with the sporadic bloating/pain/wind etc, and she had been told by various Gps for 30 yrs that she had IBS - she now can eat dd's GF bread etc and is fine, she is eating a wider diet and enjoying better health than in the entire time I have known her

she has stupidly been told by her GP that even if she was eating Gf her blood would still show the antibodies (RUBBISH)

YES I think you should get tested, yes you will have to go back onto gluten but if you get severe symptoms immediately, some GPs take that as enough evidence and will prescribe/refer you on.

It's not only worthwhile doing for access to GF food on prescription, but you might also be at risk of diabetes, osteoporosis and bowel cancers, all of which go hand in hand with long term undiagnosed coeliac disease.you will likely be offered bone scans etc. Family members WITHOUT symptoms may also be offered the test, some people are still having damage to their gut without symptoms, so although they do not have the pain/inconvenience etc, they are still suffering long term damage

trouble ttc and recurrent miscarriage have also been linked to undiagnosed coeliac disease

see your GP and/or phone coeliac Uk for advise

it might not be, but if it IS you need to know

good luck

You could get tested, but what would be the point? If you have fathomed out what prevents the attacks then you don't really need testing. The point of testing for it is to treat it and it sounds as though you have found your own way to treat it Why put yourself through weeks of pain for a diagnosis when the outcome will be the same

It does not need to be weeks of pain, with the OP's history many Dr's would accept a sudden brief return of the symptoms on reintroduction of gluten as sufficient evidence. OP could also ask to see a dietitian at the local hospital, they are more clued up than most Gps in my experience

the other linked illnesses are all serious in themselves and are screened for more readily in coeliac patients than in those who are not, they are routinely checked via bloods and bone scans etc

it is also about family members/future family members with OR WITHOUT symptoms being offered the screening test (all 1st degree relatives) - if OP has or plans to have kids, it is vital she knows

it is also about possibly EXCLUDING coeliac disease being the root of the symptoms, it MIGHT be something else that will need further investigation

Agree fully with loobey.

Also on a practical note if the op gets tested and it is positive she will be able to get a wide range of basics on prescription (bread, pasta, pizza bases, plain biscuits etc)

My dh had very severe symptoms as a baby and counts himself quite lucky that he had a diagnosis quite early on. For lots of people the symptoms aren't so clear and/or the GP isn't so clued up on coeliac disease.

Follow up ? Screening ? Ha ! I have coeliac disease, diagnosed at 25, and get none of that. I have never heard of family members being offered screening either.

Many adults don't loose weight, and I believe the most common age to be diagnosed at is 60+ now (SILs mother was diagnosed at 70).

If you are happy being gf, then I wouldn't worry about a diagnosis - I know a number of people that know that if they aren't gf then then get IBS/colitis/terrible eczema, and stick to the diet for that reason

I think if you can put yourself through it it's prob worth it to get prescription access to the gluten free 'goodies'. Dh and ds are both wheat intolerant and in ds' case oat-intolerant as well. We tried him out on oats a little while ago and he had a horrendous eczema flare up straight after, experiment over.

Neither of them can go back on to wheat long enough to be tested, I literally could not put ds through that. I don't think dh would last the course either. From my perspective with dh having various 'diagnosed' versus 'undiagnosed' conditions, the diagnosed ones are much more easy to manage; the NHS likes what it knows and understands - like diabetes - versus 'hard stuff' like chronic pain that may or may not be fibromyalgia. If you can play the NHS' game it will help you.

That notwithstanding, I'm so glad you're feeling better!

cmotdibbler - but surely coeliac UK have advised you of what you should be offered/looking for! change your GP? My dd sees consultant every 6 months, GP for prescription review, height and weight every 6 months, dietitian every 12. we can ask for more frequent if we want it. Adults i know get the same level of care, though I have read/heard horror stories too of people who are just "left" following diagnosis.

girls who have gone through puberty with undiagnosed coeliac SHOULD have bone scans and may need calcium supplememtns to ward off osteoporosis in later life

your parents, siblings and children (if any) should ALL have been offered the blood screen, even if they have no symptoms, many "silent sufferers" are detected this way. I cannot believe no one has suggested they be tested, that is just negligent!

I know of a family where dd 8 was diagnosed through classic presentation of symptoms, the blood screen was negative but the signs were obvious so she had the biopsy - her father and sister have since been diagnosed via positive blood screen then biopsy - with NO SYMPTOMS. Both her paternal grandmother and greatgrandmother had serious bowel disease (now thought to be coeliac related)

OP - re: the comments about if you are happy being GF you do not need a diagnosis. OK, if you are 70, you might be happy to go on as you are, but if you are 20/30/40 then you have many years of possible complications and its worth doing for peace of mind

Thanks for all the info - I will make a doctor's appt tomorrow and see what he says. CMOTDibbler - I made my apple cake with gluten free flour yesterday and it was delish. The cheese scones I tried came out a bit more like cheese biscuits though.

Once on a diet, you can be tested for coeliac genes, far better than going back on gluten,but you might have to fight for the test or have it done privately (ours was done by a neurologist who specialises in gluten sensitivity).

Genetic test would also pick up gluten sensitivity, which none of the standard blood/biopsy tests would not pick up.
Eating gluten can lead to numerous serious diseases like diabetes, neurological, osteoporosis and whole lot more (see book Dangerous Grains by Braly Hogan, which explains how and why this happens). Yes, the symptoms can be different in different people.

nightcat would you mind naming the neurologist?

OP I've posted in similar terms to you in the past. I had a blood test that was negative but not a total IgA test. As I have an auto-immune problem a total IgA shoud have been done. I probably will go back on gluten at some stage to request another test but am desperately trying to lose weight and know that I will not have any energy to exercise if I do. And I really hate the idea of brain fog again! I know I should do this for the sake of my family but they do not show any symptoms so I feel I can wait for a more convenient time.

I've heard equivalent of 2 slices of bread a day for 6 weeks.

Some Drs will take as sufficient evidence the fact that your symptoms immediately return when gluten is reintroduced after a well controlled Gf diet has been observed.

Gluten expert neurologist (based in Sheffield) + many of his publications:here.
The genetic tests is for DQ trait(DQ2 & DQ8 being the most common for coeliac). I don't have to hand full theory, but these feature in publications above. Any average GP will not want to know. The referral for Dr H takes approx 6 months, but I believe thereis also an equivalent clinic in London.
The similar test might be available via Yorktest or similar.

Thanks, will read up on him now. With gps staring to be paid not to refer people it's going to get harder to see anyone!

Loobey - since I was diagnosed, I've had 4 different GP practices. For adult coeliacs I have been advised that there was no need for any followup at all, apart from if I was unwell. I asked about testing for DS, but have been told that it was pointless as having the gene for coeliac disease means nothing until it activates.

cmotdibbler - I really would advise you to talk to Coeliac UK or your GP again, I can't believe you have had no follow up at all (in how many years). Have heard all sorts of stories about relatively young people suddenly having a broken bone and ending up finding out they have advanced osteoporosis!

Hopefully if you eat the prescriptiion breads rather than shop bought or homemade you will be OK as they are generally fortified with calcium, as it is known that coelaics can have a problem absorbing enough. Two ladies I know diagnosed in their 20's had bone scans as immediate follow up. HAve been advised DD does not require this as she was picked up before the growth spurt she will have at puberty.

there are plenty of people I have seen posting on here who talk about the follow up checks they recieve, esp where there is any family history of bone or bowel problems or diabetes (all of which may be linked to coeliac)

Re: your DS , I was not talking about gene testing, they should have the blood screen which picks up the coeliac antibodies WHETHER HE HAS SYMPTOMS OR NOT, as many people are silent sufferes (no symptoms). When DD was diagnosed, me and Dh and our other 2 kids were all tested and negative, though the youngest was borderline anaemic and is being retested every 6 months as the test is known to be unreliable in under 5's anyway

It used to be the recommendation that a normal gluten containing diet (at least four slices of bread or equivalent in pasta etc.) should be eaten for six weeks prior to the bloodtest (and continued until after any follow up biopsy) but this has now been revised to eating gluten for three months.

www.coeliac.info/suppboard/viewtopic.php?p=728&sid=7f7dfcef6f041cfb0fa54b72087c55d 1

I was diagnosed aged 40, I had a bone scan a couple of years later - I had to ask my doctor he didn't suggest it. I have been told I will need another one every 5 years or so. I think it's a lot of the case of if you don't ask you don't get!
I sympathise when you have to go back on the gluten - I had to feed it to my son before he was diagnosed and it's awful giving them stuff you know is making them ill - but it will save you money getting it on prescription!