Coeliacs tests, when can we come of gluten

[cherryredretrochick]

Ok, you have all been helping me so much these last few weeks so thought I would ask the next logical question. DD 4yo had the blood tests for coeliacs as well as a diabetes test on Thurs. The results for the coeliacs test may not be back for a couple of weeks. Can I take her of Gluten or do we have to wait for the blood test results to see if she needs a biopsy, ie do they still need to be having gluten before the biopsy. I just want to do something to help her she seems to be going downhill rapidly these last few weeks.

[Dottydot]

Am trying to rack my brains but I can't remember - and my biopsy was only a year ago Why don't you give your dd's consultant a quick ring - I'm sure they won't mind going through stuff with you? Hope she's OK.

[cherryredretrochick]

No consultant yet, still waiting for test results, doc thought best to do test before referal to gastrojoby wotsit. I just want to try stuff, I know you can't mess with underweight childs diet but i just want to make her better asap. Apparantly blood test can take 2 weeks. She has had a lot of other tests as well in case there is something else causiong symptoms.

[Dottydot]

As it might take a couple of months or so before the biopsy, I would have thought it would be OK to take her off Gluten, even if she has to go back on it for a couple of weeks before the biopsy, but I'd get it checked out by your GP.

[cherryredretrochick]

Only thing is if I take her off it and it makes her better I know in my heart that i won't be able to give it her again, also I have no idea where to start tbh.

[Dottydot]

ooh I feel like I'm leading you to the dark side (of coming off gluten!) - definitely check with your GP, but if you're going to avoid it you need to avoid all breaded products, most cereals, sausages (because of the breadcrumbs in them), breaded fish - fishfingers etc., biscuits, cakes - anything with flour in

It's hard at first but the range of gluten free stuff is getting better at the big supermarkets and if your dd is diagnosed as having coeliac disease you'll be able to get gluten free stuff on prescription.

[cherryredretrochick]

This time last week I would have made the decision on my own but lovely people on here persuaded me to take her to docs, I have been to docs so many times and just been looked at like I am a nutter that i was expecting the same agin. i am slightly panicked by how seriously he took me, She has also had test for diabetes doc said food issues could be a red herring and covering something more undetectable. hopefully the diabetes test should be back early in the week. I just hate waiting when she is so poorly.

[Dottydot]

It must be awful - thinking of you and hope you get the test results soon - post when you've got them.

[cherryredretrochick]

Luckily I have a friend who is a doc and told me that if there was anything seriously wrong the hospital would phone me and would not wait to go through gp to get results, made me feel a little better. I was really shocked when they told me they were going to do diabetes test but since have spent some time googling it (dangerous occupation) and can now see quite clearly why. Have also been watching her over the last couple of days and she has glugged an inhuman amount of juice as well as perking up for about 10mins directly after eating before dropping again so am v worried about that now. You could actually drive yourself mad thinking about things sometimes and I wish I didn't have the ability to research things myself.

[nightcat]

Cherry, well, yes, prolonged gluten damage can lead to irreversible damage in various organs, including diabetes - when you have damaged something beyond repair then the blood results would definitely confirm a disease.
Unfortunately, most doctors will want to see a disease rather than consider prevention before it turns into a disease.

Biopsy can also be inconclusive - the gut is 6m long and they only take a microscopic sample. You would have to be quite ill for it to guarantee the result. If the borderline sensitivity turns into autoimmune condition (like thyroid etc), then you would not be able to remove antibodies and you would have less chance of reversal boderline damage.

Another book which explains how gluten can affects various parts of the body is "Dangerous Grains" by Braly & Hogan.

It's all very complex, but what got me into gear was when a neurologist confirmed that gluten damage (to the brain in our case) can be irreversible - well, I didn't want to wait to see all of it, because my son already had some symptoms. Thankfully, many have improved.

When I found quite recently that his pancreas is low functioning (that could easily lead to diabetes!!) I was glad that we had intercepted further damage by going on the diet. Yes, it's scary, not just googling, but discovering how symptoms link and how serious this can get. Only understanding it really helped me, because otherwise you would just be chasing symptoms, because other organs can also be affected. You often hear that some conditions like diabetes don't come with a bang - they build up over a period of time - and that is almost certainly a result of unresolved gluten damage.

Also, have a look at the link below, quite good too.

link

[Dottydot]

I just remembered last night that I did have to load up on gluten a couple of weeks before my biopsy - my consultant told me to eat at least 4 shredded wheat a day and sandwiches for lunch! I'm lucky in that I don't get many of the symptoms other coeliacs do, but he wanted to see how damaged my villi (sp?) were.

So your doc might want you to give your dd gluten a short while before her biopsy But the biopsy itself is completely painless and I don't remember a thing about it - only takes a few minutes as well.

[cherryredretrochick]

Night cat - thanks for the link, it is obvious when you think about it that malnutrition can lead to many more problems then the original one. I really don't know what to do, you took your ds off gluten without any tests didn't you? i did this with dairy with dd2 as I knew straight away what it was. My mum now thinks that I should also get dd2 tested for coeliacs as at 20mnths old she has never had a normal poo in her life, doesn't show any other symptons but if there is a problem it would be much better to find out before symptons start to appear. IKWYM about doctors needing there to be a disease not just the genetic makeup to get a disease. Re3ading the link has had tears in my eyes, she did used to be such a bubbly thing, she is certainly not shy or withdrawn now but does not enjoy life the way she did as a toddler.
I feel that I should have done something a long time ago, I have taken her to the docs so many times, just been dismissed and taken there word as my own judgement slightly impaired due to PND. I think I have just always thought it was me being a bad parent causing her behaviour and it is only now I realise that I am OK that there is something else causing it.
I could take a trip to Holland and Barratt today and start Gluten free diet but I don't want to risk losing any chance I have of medical support i.e dieticians and nutritionalists.
Dotty - how old are you, have yo always had symptons or did they come on recently, basically how did you work out you had CD? Do you feel so much better now you are on the gluten free diet what changes has it made to you?

[nightcat]

Some specialists (in our case it was a neurologist!) do a HLA (haplotype) test that confirms genetic make-up consistent with CD/gluten sensitivity (most common for CD is DQ2 or DQ8) - look up glutenfreeforum for more about these. Maybe a gastro or paed would do it for you, it maybe a bit of a battle (in US there is Enterolab) and a similar lab in UK that does these tests privately, can't remember the name.

A chance appt with a locum dr (who was also a naturopath) many years ago led us to dairy-light, but later I discovered that gluten can cause damage to cells producing the lactase enzyme digesting helping to digest dairy, so it fits the picture again.

Do what feels right for now, but bear in mind that you can always try the diet.
You will find many families on glutenfreeforum who did just that, they also pursued testing other members of family as it's clearly inherited condition. Even looking at symptoms of other family members can give a lot of clues (that's how authors of Dangerous Grains start off their book).

I now look on the diet as a choice healthy option. To be honest you don't really need H&B, I cook a lot from scratch to avoid MSG and other unwelcome ingredients. We use less that 1 loaf of g/f bread per week (and even birds don't like it, so there can't be much goodness in it - it's just a cheap filler really).

[Dottydot]

Yes, if your dd1 is diagnosed as coeliac you should get all immediate family members tested anyway - including yourself!

I'm 38 and was only diagnosed last year. I think I've had it for many years though - at least since I was 18. My main symptom was being massively anaemic - which was picked up when I was 18 when I first tried to give blood but couldn't. But it was always put down to heavy periods, which I also have. 2 years ago I ended up in hospital with sudden paralysis down one side and across my face (very scary) and no-one could find out what caused it. Routine blood test showed the anaemia as usual and my fab GP decided to do the coeliac blood test as a last resort - which came back "strongly positive". Then a biopsy confirmed it.

Since then I've been gluten free and my last blood test showed an amazing hb(iron) level!! To be honest I don't feel much different, but I know physically I need to maintain the gluten free diet.

Ironically I didn't used to get any tummy problems before being diagnosed but now I'm gluten free, if I have any gluten by mistake I get stomach ache, the runs etc.

[cherryredretrochick]

Ok so what good would having a diagnosis do, would it be obvious if it was gluten in a very short space of tme? The more I am reading the more I want to just try and see if it helps. If i didn't take her off gluten how long would we be likely to have to wait for a biopsy (assuming blood test is positive)? If blood test comes back negative could it be wrong? If that happens would the doc just say well it is not coeliacs or would they carry on testing? I am sorry to be going on but I am in such a state right now and you are helping me sort it out.

[nightcat]

My ds blood test was neg, but it came with note (confirmed by a paed) that in under 16 this test is inconclusive; never had the biopsy, didn't even ask, because we were already on the diet by then.
Bear in mind that even with a pos test, no one can force you/your family to go on the diet.
I noticed a slight improvement within a week, the greyness went away within a few weeks, the first changes were the improvement in speech, alertness and response.
My dr wouldn't have offered any tests or referrals, so I usually present him with well justified requests.

[YeahBut]

Don't take your child off gluten until the biopsy. If you remove gluten from her diet before then, it may lead to a false result. In fact, my friend was advised to completely load her children up with gluten in the run up to the testing for a clearer picture. (Best friend's 2 sons have coeliacs and had all the testing done less than a year ago.)

[Sciolist]

I can also recommend Dangerous Grains.

As soon as you stop taking gluten, the villi start to recover. There can be significant improvement in a few weeks, so if you had a biopsy afterward that you might get a false negative. It is possible to get a false nagative blood test, but the only way to tell is to have a biopsy.

We insisted the gastroenterologist take several samples of gut for DS - not just one. The results were negative in his case, and he improved after taking antibiotics for giardia. However he still misses a huge amount of school (1 day in 5) with stomach pains. I suspect he may have been in the very early stages of CD, but both the blood test and the biopsy were negative....

[Roca]

I have been a coeliac my whole life (am 35) as is my sister (although not our parents). She has always show physical tmore than me - i.e. we could both eat something with gluten in and she would be sick and I wouldn't.

We were diagnosed at about 9 months old when fully into solids (i.e. loads of gluten in weetabix and rusks etc). My Dad says it would be obvious to tell in my kids as we were really sick with dioreeah and malnourished (my kids dont have it).

I came off gluten free diet twice - once at age 10 after a biopsy was not conclusive (2 yrs later poor weight gain meant i had to go back on it). Then age 20 I had another biopsy BUT I HAD NOT BEEN ON A GLUTEN DIET which I queried and my biopsy showed clear even though I thought this was wrong I was told it was ok to eat gluten - However, serious abdominal pains a couple of years later, a blood test and final biopsy confirmed it was still there. Next DR said of course I would always have it.

What I am trying to say is - I think you should defo have to eat gluten before a biopsy or your villi will look fine giving a false result. However,if this is a while ago then not sure whether they should stay on for now?

Also - it was only in my 20's that the blood test came into action - there should be an anti body dshown which only coeliacs have so should pretty much be able to tell from that.

Sorry for waffling.

Also - whilst it is a right pain and was hard in childhood to have (had to take my own sarnies to kids parties etc - ODD ONE OUT!!!) you get used to it and I enjoy most things that everyone has - GF crumbles / pasta dishes and dh makes me lovely bread.

xx

[tkband3]

Cherry, no time to read whole thread I'm afraid as I'm on my way out, so apologies if I'm repeating others here...

You must not take your DD off gluten until after the biopsy. Coeliac UK recommend around 4 slices of bread a day for 3 months prior to testing now (another MNer put me straight on this last week). Hopefully if her blood test does come back positive, you will not have to wait too long for the biopsy, but if you take her off gluten now, and the test is positive, you will have to put her back on gluten and wait 3 months till the biopsy.

Advantages of full diagnosis after biopsy are that you get some of the food on prescription and you will have frequent check-ups etc to ensure she is doing well. Undiagnosed coeliac disease does have some quite serious side-effects and there can be associated issues, such as thyroid problems, which they will look out for.

It is my experience that results take about 3 weeks to come back for coeliac tests (but that could just be at our hospital). Why don't you start pushing now for an appointment for a biopsy, which can always be cancelled if the test is negative.

[whispywhisp]

cherry - have you got a Health Visitor you could speak to? I have found them to be a great help especially as their more geared up for kids & their health.

[nightcat]

Cherry, I have just come across this in my own research, can't see all of it I am afraid, but there is good info in what you can see.
The author also wrote a couple of books if you want to explore this more.

link

[flamingtoaster]

As others have said your daughter should not come off gluten yet - even if she has a negative blood test she may have to have a biopsy. Some coeliacs do not have the antiibodies in their blood and thus get a negative bloodtest because of a peculiarity in how their immune system works. A biopsy is then needed for diagnosis. The current recommendation is that the patient must be eating the equivalent of four slices of bread a day for three months before a biopsy. Also if you come off gluten and then go back on the symptoms can be much worse.

You'll find a lot of helpful information and support here:

www.members2.boardhost.com/glutenfree

and lots of recipes when you need them on the Supplementary Board attached to it. If, unfortunately, your daughter turns out to be both coeliac and diabetic this can cause additional problems with the glutenfree diet and there are parents on there with children with both problems. I'm sure she won't turn out to be both but thought I would mention it so you could get help if you needed it.

If she is coeliac it really doesn't take long to get the hang of it - you soon get used to having an extra gf toaster, etc.!

[cherryredretrochick]

Flamingtoaster, Hi she is now off gluten as all the other tests came back negative, thank god she doesn't have diabetes. The doctor said that she should come off gluten asap and we will see how she reacts to the diet. She was just dropping a bit too quick IYSWIM. It has been only 2 days now and the difference is incredible. She has bags of energy and is doing normal poos. She is also a human dustbin and all I have spent the last few days doing is buying and preparing food. Not that I am complaining.

She still looks grey but I guess that takes a while, also the change in her behaviour is dramatic, only 1 or 2 tantrums all day and fairly unimpressive ones at that.
From my research I could see no reason to keep her ill for the sake of a diagnsis. I know tht will cause problems in the long term but we will deal with those if ad when we have to. At the moment I feel great that I am finally able to do something to help my baby.

If it turns out that it is not coeliacs, doctor said should be very apparent in about a week, we are seeing him again in a couple to assess and for her referaal to gastroentrology, then we will just have to keep looking for the answer but I really think we may have sorted it.

The doctor is also going to refer her ds as she is likley to have it if dd1 does, she is lactose intolernt and always has diarehha.

Thanks for the links, by the way do oats have gluten in them?

[LardyMardyDaisy]

cherry....just seen this and, as a coeliac who was diagnosed a few years ago, can answer a couple of your questions. Having a diagnosis would mean that your DD would get gluten free products on prescription which would save you an awful lot of money as GF products are scarily expensive.

as far as I'm aware a biopsy is the only conclusive way to dignose coealiac disease. Yes only a minute sample of the gut is taken, but as the villi flatten out completely under the influence of gluten then only a small amount of gut tissue is needed.

I'm also pretty sure that your DD would need to be back on a gluten containing diet for a min of three weeks, but the gastroenterologist will discuss this with you.

oats contain a protein which is similar to gluten and can be tolerated by the majority of coeliacs. the main problem with oats is cross contamination from other cereal crops as they are generally processed at the same mill. There ar some brands of oats that are wheat and barley gluten free but they are hard to come by.

from a practical point of view, sainsbury's and tescos free from ranges do the best range of products. They both do English muffins which, when toasted, are almost like the real thing. I eat them for breakfast and toasted and filled for lunch.

where symptoms are concerned; other than mild stomach bloating and discomfort for most of my life I was relatively symptom free (other than a severe outbreak of (undiagnosed at the time but obvious now) DH 12 years ago which recurs occasionally) I was diagnosed at 35 after a nasty bout of gastro-enteritis which just didn't go away. I dread to think what long term damage I've done.

good Luck with your DDs diagnosis.

[flamingtoaster]

cherryredretrochick - great news that the other tests are negative. As LardyMardyDaisy says some coeliacs do tolerate oats - the recommendation is that they are not given to children but adults can have a maximum of 50g of uncontaminated oats a day, but must watch for a return of symptoms. However, you don't have to think of that for at least 14 years!

If your doctor took her off gluten as her weight was dropping too quickly and she improves (as she is doing) on the diet (it is particularly significant that her behaviour has changed too as this is often the case with coeliac children who come off gluten) then they may be willing to diagnose on the basis of symptoms and recovery on the diet - she will be classed as "treat as coeliac" and get prescriptions. It does leave the door open for a more strict prescription policy/stricter doctor to argue about prescriptions in later years but that's a separate issue. Personally I think it is barbaric that parents have to make their children iller for longer to get the diagnosis! My DS is coeliac (by blood test) but because he is also allergic to gluten he had to come off it immediately and because there was too long a delay did not have a biopsy. Despite changing practices he continues to have prescriptions.

It's great when they start to recover. You probably know all of what I am about to say but I say it so you can avoid some of the traps the newly diagnosed often fall in to! As I said in a previous post she now needs her own toaster and it will make it easier for you if you always prepare her bread/cereal/lunch before you get anything with gluten out for the others. Tubs of butter and jars of jam need to be kept gluten-crumb free so separate knives and spoons for everything. I found it easier to only bake glutenfree cakes etc. - and as I would have felt guilty using prescription flour for something the whole family would eat I use Dove's Farm Gluten Free Plain Flour. You just substitute it in your usual recipe with, usually, a little more liquid.

Great to hear your daughter is now recovering.