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Celiac Home Test - Help Me Get the Best Out Of This Please...

(16 Posts)
rockinhippy Mon 11-Mar-13 12:26:09

Thank you bedhopper - writing those tests down & making an appointment for us both to see GP in a few weeks time & try for referral too - celiac certainly would answer a lot of puzzles - I've just read its linked to sinus problems too - I've a chronic sinusitis diagnosis too & since doing the gluten load of 2 or more meals a day - I cant stop bloody sneezing & its getting worse by the day

megandraper Mon 11-Mar-13 10:56:52

Good luck OP. I would definitely push to have a coeliac test yourself (I think 6 weeks of gluten at at least two meals a day is the minimum recommended). Personally I would also push to have your DC tested. I would also push for your DC to have an HLA-typing test (this shows whether she has either of the 'coeliac genes' - DQ2/DQ8). If she doesn't have the gene, it's almost impossible for her to be coeliac. If she does, combined with coeliac in the family, there is a much higher chance of her developing coeliac some time in her life, and she should be regularly tested. I would actually push to see a paediatrician or paediatric gastroenterologist with experience of coeliac.

rockinhippy Fri 08-Mar-13 11:06:02

Thank you for all this fantastic info smile

- the more I look at this & the more research I do, the more cross I get with our GP - (DM too for that matter, who didn't think her being diagnosed about 10 years ago was something I needed know abouthmm but thats a whole n'other can o worms sad )

Seems our GPs understanding of the test is very flawed, in that she insisted to me at the time, that even though I had DD on a wheat free diet as I had already worked out that the harder to digest foods aggravated her stomach problems during a flare up of "IBS" & cutting diary & wheat out (she's never eaten meat) would still mean the test would work as she must have still eaten some gluten - seems the GP was treating it as you would a viral/bacterial infection test, in that once you have had the infection, you have antibodies in your blood for ever - obviously not the case for gluten, but our GP didn't seem to know thathmm

It took ages to get ds2 diagnosed because he started out 98% for height and weight and dropping to 50% weight was still seen as normal

THAT is SOooooo familiar - DD went from being 98 - 105 % for height & around 75% for weight to under 25% - she was born tall & slim & stayed a good 4-6 inches taller than her peers all through nursery & school & literally stopped growing in about year 3, so by year 4 she was one of the smallest in class - but would they hell as like listen - "its all normal & they develop at different rates & her friends are just catching her up" hmm - getting her off the inhaler meant she grew 3 inches in 2 weekshmm

I did some further noseying around the internet & turns out NHS guidelines mean our GP should be testing at least me regularly, DD being so symptomatic would probably mean her too, but just as with the IBS & she now has the JHMS diagnosis, it actually makes it more difficult to get heard as everything is fobbed off on the diagnosed condition - I have a Fibromyalgia & chronic migraine diagnosis, so I know that one too well - recently diagnosed with 2 other conditions after fighting for 10 years to be heard - for example - our GP was on maternity leave meaning I was finally tested for H.Pylori - her maternity cover was shocked I had never been tested before - it was positivehmm

I'm now actually not sure which was is going to be most productive - test myself & see GP to push for more, or test DD - we've both been eating a lot more wheat lately & boy am I feeling it - I have worsening aches & constant sharp shooting pains everywhere & lots more & reading more on celiac & related conditions, many of which I have problems with - currently trying to get myself heard over pain in the pancreas area & I was recently diagnosed with Chronic Kidney Disease & high cholesterol - diet & life style make that one nigh on impossible confused Celiac would answer that mystery too

- but after probably 3 weeks of wheat meals at least twice a day, DD on the other hand seems to have levelled out confused

Celiac does answer one mystery for her that JHMS doesn't though & that is DDs poor immunity & too frequent bouts of Mesenteric Adenitis (painful swollen stomach lymph glands) so I do need to fight harder & point out the NHS guidelines to slack GP - though in fairness she has been more on the ball of late, I think she realises she might have missed stuff she shouldn't have, so I'm hoping she will be more open to listening now

thanks again smile

Bumply Wed 06-Mar-13 15:42:16

This forum is a good place to get advice.

Bumply Wed 06-Mar-13 15:39:15

Coeliac rate in the population is 1 in 100. This rises to 1 in10 if you have someone with it in the close family.
It took ages to get ds2 diagnosed because he started out 98% for height and weight and dropping to 50% weight was still seen as normal.
You have to be eating large amounts of gluten to guarantee a positive result in the blood tests.
Doctors still seem to be poorly educated on prevalence if coeliac and how best to test for it. Persevere.

megandraper Wed 06-Mar-13 15:27:19

Oh, and I meant to say - to be coeliac, three factors have to be involved.

1) you have to have a gene for coeliac (this can be tested for by an HLA-typing blood test) But up to a third of the population have the gene without being coeliac, so this alone is not enough.

2) an environmental trigger has to set the gene off - making it trigger the immune system to consider gluten an invader and produce antibodies against it. This can happen at any age, and for a myriad of reasons (a virus, a physical trauma like an accident, mental stress, pregnancy/childbirth etc. etc.) How this trigger works is not yet well understood.

3) there has to have been gluten in the body. Someone who has never eaten any gluten can't be coeliac (the body won't have been triggered to produce antibodies against it) - so an unweaned baby that's only ever had milk can't be coeliac IYSWIM.

megandraper Wed 06-Mar-13 15:22:50

Sounds like you need to push for a test again. You could look at the Coeliac UK website, or ring their advice line. It is a good idea to be clued up about the blood tests, and know which tests the doctor is doing, and what negative results mean.

The blood test tests for antibodies in the blood that coeliac people make when their body detects gluten. So if you haven't had gluten for a while, there may be no antibodies - it is important to have plenty of gluten in the diet for a couple of months before the test (Coeliac UK can advise on how much gluten is required.)

I also knew my DS1's growth had slowed, but docs refused to be aware of that, since he was still within normal range - but I didn't want to wait for him to fall right out of the range before they did something - there's normal statistically across a population, and there's normal for a particular individual, they are not the same thing.

As Coeliac UK may tell you - a huge proportion of newly diagnosed coeliacs have previously incorrectly been diagnosed with IBS.

You should also ask for a full blood count along with the coeliac blood test - a lot of coeliacs are anaemic because of malabsorption (damaged gut can't absorb nutrients like iron) - the anaemia contributes a lot to the exhaustion.

Good luck. I hope you get to the bottom of it, whatever it turns out to be.

rockinhippy Wed 06-Mar-13 14:41:54

I should have added, she was officially diagnosed IBS by a Gastro at 6ish too, but then I didn't know about the gluten load thing, so didn't push for more testing & he was very keen just to diagnose IBS & pas us over to a nutritional therapist who basically told me I was already doing all the right things & more & carry on

rockinhippy Wed 06-Mar-13 14:36:46

Also, coeliac can start at any time in life, so one negative test doesn't mean you never test again

Thanks bedhopper Hmmmm - interesting - now thats something I didn't know, I presumed it was something you were born with but severity of reactions can vary according to diet & individual people, also DD was young when tested, though I think she was probably about 6.

She has had some health problems since tiny, but these were skin reactions to what turned out to be additives, she had some tummy problems before 5 but it all got MUCH worse after she was hospitalised with pneumonia at 5, initially out down to the heavy drug treatment & also that the drugs contain the colours & preservatives that we know she is very intolerant too, but there was no choice, she took them, or died sad - her generally health didn't pick up after that, at one point they were talking juvenile M.E. but thankfully I managed to turn it around with diet & supplementing with Spirulina, which was a godsend back then & had her back to full time school & coping fine in a week.

We have seen a paediatric Gastro when she was 8, because the IBS got out of control, it wasn't down to the triggers we by then knew & managed well & we also knew she had stopped growing, but the medics refused to accept that as she was still within their expectations for her age, no allowance made for her previously being exceptionally tall/6'5" dad etc, so to be honest they weren't much help at all, treat me like neurotic mum & put it all down to IBShmm - thanks to our chemist & a break from her asthma inhalers whilst on holiday in Egypt, I later realised it was actually the inhalers that were affecting her stomach so badly & its not an unknown side effect - so like a say, pretty useless as that should have been something they were aware of sad - taking her off the culprit inhaler stopped the daily diarrhoea & stomach cramps hmm -

In fairness though, I didn't know then that my DM was also celiac so I probably didn't push it as much as perhaps I should & she doesn't have typical symptoms, slim, but not super skinny bar during the bad time at 7/8 but she does have symptoms, her constant aches & pains along with the IBS & headaches, insomnia, exhaustion & bouts of anxiety eventually (with a fight) lead to a joint Hypermobility diagnosis,

she is definitely hyper mobile, but lots are without symptoms but I also notice her anxiety symptoms are worse lately & she's eating more wheat & after seeing your comments on your DHs mood with gluten 2madboys that now also makes me wonder

Thanks both of you

megandraper Wed 06-Mar-13 12:12:47

Good luck. It does sound like the first test wasn't done under good enough conditions. Also, coeliac can start at any time in life, so one negative test doesn't mean you never test again.

Also, false negatives do happen with the blood test, especially with children under 5. How old was your DD at the time? About 10% of coeliacs don't test positive on the blood test (but do show coeliac gut damage when biopsied) - the biopsy is still the gold-standard test.

I think you should push to be referred to a paediatric gastroenterologist. They can do a thorough investigation, including family history, and discuss with you the need for a repeat blood test and/or potential biopsy.

You are right, if she is coeliac, it is much better to get a proper diagnosis. As you say, being able to get prescription food is helpful (though this is very limited) - but more important is the regular medical follow-up, with repeat blood tests to check that accidental gluten intake isn't occurring, and medical awareness of possible other auto-immune diseases developing, like diabetes/thyroid problems etc.

We have one child with coeliac diagnosed by blood test/biopsy and one 'probable coeliac' who was negative on both blood test and biopsy but paed gastroenterologist agreed with us that he is very likely to be coeliac (he had marked symptoms) and should be eating gluten-free until he is older, when we'll do another gluten challenge and re-test. Since then, his symptoms have gone away with being gluten free, and he has had an HLA-typing blood test which shows that he has a coeliac gene (the same one as his brother) - both of which facts support the diagnosis.

2madboys - I think your GP is wrong about thinking gluten can't cause neuro symptoms - am sure it can, and recent research is suggesting that there is a range of 'non-coeliac gluten sensitivity' which can cause neuro symptoms like depression - I know someone who is not coeliac, whose long-term depression has improved considerably since going largely gluten-free.

rockinhippy Wed 06-Mar-13 12:01:55

that does make sense sad - the more I read on it, the scarier it is, it realy does affect so much doesn't it - hence why I am so keen to make sure it really has been properly ruled out for DD & if not, we will deal with it - in some ways it could be a blessing to have an answer to her problems that we can manage ourselves, as she's getting little help medically - IYSWIM

2madboys Wed 06-Mar-13 11:57:43

MIL knows she needs a proper diagnosis but isn't prepared to go back to eating gluten as it made her feel so bad.

rockinhippy Wed 06-Mar-13 11:24:04

Thanks 2madboys I've now had a look on the Celiac Uk site & did manage to find a bit more info, though if I'm understanding it correctly it looks at if DCs might need to eat more gluten - it does mention eating 2 lots a day for 6 weeks for adults & then goes on to say adding more & hiding wheat in yoghurt etc for DCs, so I think I need to sit down & work out when DDs last bad attack/wheat free period was & take it from there smile

& yes, scary how much GPs attitudes seem to differ, our GP was absolutely adamant that DDs test would be accurate because she believed she would have eaten some at some point recently, that without even allowing me to go into any detail about her normal diethmm & don't get me started on her refusing to test me too, yet I also have a diagnosis of related conditions - I just don't think she believes my Grandmother & DM were diagnosedhmm - though DM ignores it & eats normally & I can now see its probably the reason she has MS & Diabetes amongst other things sad

I did notice Celiac UK have a banner saying proper medical diagnosis is important - maybe your MIL needs to take a print out of that to her GP - that ridiculous she has to pay for what she needs medically at her ageangry

thanks for your help smile

2madboys Wed 06-Mar-13 10:25:39

Sorry - strange things happened with my editing! Meant to say, his utter lack of concentration and grumpiness when he's eaten something contaminated!

2madboys Wed 06-Mar-13 10:25:00

I don't think she needs to eat loads of gluten for the test to be accurate - she's probably ok with what she's been doing, but you would probably be able to find out on the Coeliac UK website. You deff need a retest if she wasn't eating gluten at the time and if it's in your family she may have it. My DH has coeliac and we've found massive variations with GPs - MIL's gp just told her to stop eating gluten without doing any tests, so she doesn't get any gluten free food on prescription, which would be free as she's a pensioner. Our GP refuses to believe that there are any neurological effects to coeliac hmm- not sure how he would explain the depression my DH suffered from which is now fine and the utter lack of concenm]

rockinhippy Wed 06-Mar-13 10:14:37

My 10yr old DD has had ongoing health problems for years, original diagnosis IBS, more recently Joint Hypermobility Syndrome, which does cover IBS & all her other pain problems, which I can see is correct, but every time I start googling to try & find ways of helping her cope with the various symptoms, up pops Celiac info, again & again & I never did feel this was properly ruled out, though or GP insisted it was & refused to retest her - I've even now read of links between JHMS & Celiac - add to that a thread on here linking long lush eyelashes to Celiac & it being the same gene responsible for both - DD has eyelashes to die for, thick dark & about half inch long, so it got me thinking again about Celiac & the original blood test DD had.

I KNOW from trial & error & years of dealing with this, that when DDs stomach problems flare up, she becomes wheat & dairy intolerant, so I will take them out of her diet for a while, at ither times she is okay, or seems okay with them, though i do wonder the more i read - we don't eat processed foods & I cook everything from scratch anyway, always have done, barley & rye are just not a normal part of our diet, so I believe if DD isn't eating wheat, chances of her eating any gluten foods are practically nil ?? -

When DD was tested for Celiac it was during a period of ongoing bad stomach problems, daily diarrhoea, pain etc - we weren't told to load up on gluten & DD wasn't eating it, hadn't been for a couple of months - all her tests for deficiencies were fine, our GP insisting this meant she wasn't celiac & when i later found out about gluten loading, she also insisted a re test wasn't necessary as DD would have eaten enough gluten for the test to be accurate & I got nowhere trying to convince her otherwise, she also wouldn't accept that DDs nutritional tests been good was down to the fact that my knowing her body was basically throwing out food before it had time to be properly digest meant I have been fanatical about making sure she gets the best nutrition possible, balancing every meal & supplementing with Spirulina, DD also loves healthy food - I've noticed she gets ill if this slips a bit & she eats a more normal diet.

Anyway having read a few things this week & knowing its in our family, I've decided to look into Celiac again as I feel it still needs to be properly ruled out, I spotted the home test kits & went & chatted with the main pharmacist in a big chemist - she confirmed that the way the test works, if DD wasn't eating Gluten at the time of the then there is no way it can be accurate.

So having it confirmed they do work & are accepted medicalky, so our GP cant balk at it, I've bought the test, but realise I forgot to ask about gluten loading & finding info on the net confusing -

My question -

DD has been eating wheat lately, but its not a huge part of our diet as its affected me too, she has been eating more lately & I'm now having her eat 3 times a day, but realise I don't know how long to do that for to get the most accurate test results

Thank you smile

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