Celiac Disease discussion

[UlrikaandOlle]

Hi, I have coeliac disease - got my diagnose in my 20s - so like 10 years ago. I have kept a close eye on DS (now 22 months) and how he reacts to wheat and gluten, and must say I am getting more and more worried. He is very windy (smells like there's poo in the nappy, but most often there isn't), 1-2 loose poos a day, some eczema and nappy rash - apart from that he is a happy boy, sleeping very well and gaining weight - has always been on the 98th percentile! That is why the GP says to me not to worry, because DS is big. But what else could it be? Should I try to exclude gluten or dairy from his meals for a couple of weeks and see if that helps? Or is it better to have the blood tests done before you experiment with food?

Thanks for any input!

[Mashi]

If you are having a blood test done, then I believe that it is just an IgE "marker" they are looking for which should be present whether there is gluten in your system or not.  You can get home tests, I know you can get them in Canada but the company I know will not ship outside of Canada.  There must be a similar product in the UK although I have never looked.  If you google for it you may find one. It's not 100% accurate but it is a good start.

If you are having a bowel biopsy done (which is the ONLY accurate way to diagnose celiac for 100% certain) then if you have gone onto a gluten free diet and the bowel has repaired itself then it can cause false results.  So in this case you need to be eating a "regular" diet for a time period before the bowel biopsy.

Probably the best way to do it is go gluten free for your son for a time period and see if he changes, and ask the doctor for a blood test.

The thing is, at this age lots of LOs are windy and have loose bowel movements, 1-2 a day is normal I think, and eczema and nappy rash aren't really signs of celiac disease -- just toddlers.  Windiness can be caused by lots of foods and it might just be his body getting used to digesting them as his system is still young an immature.  Foods like beans, cabbage, brocolli, etc all cause windiness!  Eczema can be food related or environmental or even just sensitive skin.  I wouldn't worry if those are his only symptoms - they seem really toddlerish rather than celiac. IMO!

[anna and adam]

Im also a coeliac, carefully watching my babies for any signs. My 4 year old is still not showing any symptoms and I am keeping the 8 month old gluten free for the first year, just in case, I don't want him to get ill when he is this little. I will however get them tested immediately if I have any reason to suspect gluten intolerance, and actually, I will probably test them anyway, I know I didn't have any obvious symptoms myself. And just a blood test, why not, probably one less thing to be worried about.

[anna and adam]

Just had a chat with my specialist and we discussed testing children without very clear symptoms and he is very much against it. He says the chance of a false positive blood test is v high in children without symptoms, and then you end up needlessly forcing a tube down a childs throat under general. So actually, I will not now get them tested unless we have serious symptoms lasting for more than a month, failure to thrive etc.

[Michealleo]

hi i wana know if if i can't drink diary products then it is really necessary for me to go for a celiac test?  right now i can't drink milk and the things those r made of milk . if i will drink then probably i'll get the diarrhea soon . so help me to figure it out what can helps me ?

[weaver]

Hello folks,

just wondering about experiences with false positives from blood tests for coeliac disease? 

I'm taking LO off for the blood test on Friday afternoon (they almost did it last week but botched it so we have to go back to the hospital again, argh).  There's coeliac disease in my family, I don't have it, but LO has had very large, soft poos (always poo in the coeliac discussions!) for some months now, he's always hungry (or saying he is), isn't particularly tall for his age and, having kept a food diary for him, it does look like there's a pattern. 

The docs seem to be relying on the blood test rather than the other information we've provided so that's why I'm a tad concerned about false positives.  Thanks for any help!

[deb]

Tagging along as i appear to have gluten issues too!

[weaver]

Deb, sorry to hear you have issues. We're off for our blood test today and going on a GF diet after that just to see what that does for himself. 

[essexlemon]

Can I tag along.  DS is undiagnosed at the moment but the paediatrician seemed very interested in the fact that DH has pernicious anaemia and I know that goes hand in hand with coeliac.  CD is just one of many possibilities for him at the moment but I don't want to lose this thread as DH and I both have a feeling that there could be something in the coeliac angle.

[deb]

Wow, forgot all about this thread! Been gluten-free now for a few months and LOVE it!!! The chronic joint pain is GONE, and except for a recent bout of sciatica which has slowed me down some (temporarily, mind you!) which has caused me to gain back a few pounds, I lost 10-15 pounds in the last few months between the loss of excess carbs from grains and some increased exercise that came with a temporary teaching job. I also have been able to go off my thyroid meds (I have Hashimoto's) doing this, and my migraines have also gone away.

I didn't have any reaction in blood tests and my (former) doctor said I could have all the gluten I wanted and it wasn't causing problems, but phooey, I feel better, which to me only validates the invalidity of the blood tests.

[essexlemon]

Deb, that's interesting you had chronic joint pain - one of DS1's symptoms is that his knees swell up at intervals and he is unable to weight bear.  The swelling only lasts a short time but we are convinced he gets pain in between the swellings.

The more we look at it, the more coeliac seems a possibility.  We're going to wait until we hear from the hospital before we try an ED with him though.

[essexlemon]

Sorry ladies - I have what is probably a silly question.

DS2 is showing signs of reflux or a food intolerance.  I took him to the docs today as the Gaviscon is only having a very limited effect for him (and starting to bung him up).  It was a different doc and I told him that DH has perniscious anaemia and that I suspect he may have CD alongside it but refuses to go to the docs about it - I asked if it was a possibility with DS2 and he said that it is always possible when there is tummy trouble so has given me a blood test form and told me to book up with the hospital.

So, seeing as I've been trying a wheat and dairy ED for about the past week (which I didn't own up to - they get a bit freaked out at the word 'diet' from a BF'ing mum) is that likely to scew the results?  Do I need to quit the diet until he has the test and then go back on?

[deb]

I'm pretty sure you have to still be eating gluten for the test to work - but that said, false negatives abound on these things. I'm living proof.

The best test in the absence of actual gut damage - which happens when the problem is already bad! - is apparently a DNA test. And most doctors don't even know about it, much less are amenable to doing it. The DNA test doesn't tell you for sure if you HAVE celiac, but if you have the gene for it, which would predispose you to it. Here's a link to some more information about that test, both the pros and cons: http://theliberatedkitchenpdx.com/basics/celiac-testing-myth-dna-proof/ There are links at the end that I haven't read yet but definitely will.

On a different note, I looked up the DF links to find pictures and I'm 95% sure that Josie's rash is DF. I don't know if I can get her doctor to do the skin test - they take a small sample of skin from around the rash and test it for antibodies to gluten - but if we can, it would help us to understand how sensitive she is to gluten and whether we even need to avoid trace gluten; right now I'm not reading labels to see if things are processed in gluten-free facilities the way a full-on celiac patient would have to, but if I have to go that route I do have a couple of stores near me that I can go to for true gluten-free foods and resources, plus with all the scratch cooking I do, I can modify things for her.

Edited to add: Here's another link to one of the links at the bottom of that last one, in case anyone doesn't want to click them all: http://theliberatedkitchenpdx.com/physical-health/celiac-testing-myth6-negative-results-no-problems/  This is the one I wish I'd read before my own iG testing for gluten intolerance. But at least by then I knew to not trust the blood tests and I went ahead and did my own thing anyway. LOL

[essexlemon]

Thanks Deb,

TBH I know that the blood test isn't that accurate but since the docs freak out at the mention of an ED I'm *hoping* that the test will work out for us.  It would be so much easier when dealing with people generally if I have the backing of a formal dx.  I tend to get looked at as a bit of a nutter even over DS1 and his reflux, which improved massively with medication, especially by the IL's.  People don't believe how bad they get.

I think to be honest that if the blood test comes back positive I will push for a Dr supervised ED and food challenge rather than any other invasive testing.  It's daft really because I can't get a blood test done for a couple of weeks (under 3's have to be booked in at the hospital) by which time I could have been well on the way with a diet - by the time the results come back I probably could have finished the diet and done the challenge but there we are.  Apparently it's not possible for a BF'ing mum to eat healthy and get all her calories and nutrients if there is even a whiff of restriction.

If the test comes back negative I will still push for a supervised ED (purely so that it is all in his notes and the results can be recorded at the surgery) on the grounds that he is certainly intolerant to something.

We haven't really seen much improvement with me avoiding wheat and dairy but tbh I have mucked it up a couple of times - misreading lables etc - and I guess if it was celiac then avoiding wheat wouldn't be enough.

In the meantime, I think I will try to stick to dairy free but reintroduce wheat for now, just until they have taken bloods.

[essexlemon]

Sorry ladies, me again.

DS was tested on Tuesday (blood test) and we are awaiting results.  I'm back on a wheat and dairy ED as of Wednesday morning (did a big shop on Tuesday afternoon after a week at my parents) and DS is already much, much better at night.  Surely that is too quick?

He had an ear infection last week (which I have suspected for some weeks but keep being sent away as his ears looked clear) so I expected the abx would give some relief but he was as horrendous as ever and very grumpy in the day.  Almost the second I stopped dairy and wheat he is much happier and, although it's still far from perfect, sleep is much better.  Is this the placebo effect?  I'm fairly certain if he has coeliac he wouldn't improve that fast, would he?