help with coeliac test

[pigsinmud]

Ds2 has been wheat free for 2 years - gp queried wheat intolerance as was bloated, very tired, horrid poos etc.. Seemed better on wheat free, but still very bloated, stick arms and no bottom. We decided to put him back on wheat for 6 weeks in order to do coeliac test at home - horrid poos returned, very bloated again.
Today we did the test - bit like a pregnancy test as we had to dip the stick in solution with few drops of his blood. 5 minutes passed - test line to show test had worked appeared. Then a very, very, very faint line appeared. Now I mean really faint. This happened within the 10 minutes after test. Since then the line has become clearer, however it says to ignore results after 10 minutes. Bit confused. Has anyone got any experience with these tests. Is it possible to be able to see the result line through the stick without it actually being a positive? Would seem a bit daft to me, but it was so faint.

schilke...I don't think that I can help you, as I've not heard of these test strips, but its possible they are testing for gluten antibodies in the blood.

I was diagnosed coeliac 2 years ago, a blood sample showed up positive for gluten antibodies, then a biopsy was done which comfirmed the results. As far as I'm aware the only test that will give an accurate diagnosis is a biopsy, where a small piece of intestine is removed and ezamined microscopically.

Try coeliac UK for further advice/information

Hope you get an answer soon.

My blood tests just over 2 years ago were indeterminate (the home test kit did not exist then). My GP was not sure whether I should have a biopsy, but I insisted as my brother is coeliac, and sure enough I am too.

I would say that your combination of symptoms and an unclear blood test are enough to make the biopsy advisable. DS (age 12) had the biopsy earlier this year and sailed through it without a qualm (unlike his parents).

Coming to this one a bit late...sorry. My DD1 was diagnosed last year. She had a blood test at the hospital but apparently the blood tests are not 100% accurate, so although she had a positive result she also had to have a biopsy like clerkkent to confirm the diagnosis. (She was 2.10 at the time and other than some distress on coming round from the GA, she sailed through the whole procedure and had great fun at the hospital).

Coeliac UK is a great organisation, but they can be a bit funny about queries from non-members (membership is free for a child). OH's nephew was diagnosed a couple of months ago, but when his mother rang for some info, they wouldn't talk to her until she'd joined. But we're members so I'd be happy to talk to them on your behalf if you can't get any joy - let me know.

Thanks for the replies. Can you join Coeliac UK even if not diagnosed? I feel like I need to push the issue with my GP - he is lovely, but a bit too laid back at times. He suggested wheat free in the first place, but he is not that great at listening.

Ds2 has had another sore throat with very high temperature - 2nd time since going back on wheat .... not sure if this is just a coincidence. I also weighed him last night. He is almost 7 and weighs 3 stone 3 lbs - seems a bit light to me. He looks very thin & bony. It works out on the 9th centile - just over 1 year ago he had a check with school nurse and he was on the 50th centile. My dh & his sister have stomach issues, but both refuse to go wheat free ... dh's sister has tried every possible alternative - omitting yeast, sugar, .... I always feel like I'm just making a fuss, but he doesn't seem right.

I am not sure whether you can join before you get a diagnosis, but part of the service the Coeliac Society provides is to help with diagnosis. You can call their help line on 0870 4448804.

Your dh and sister really should try to get a diagnosis as well - you feel so much better once your body is able to process your food properly and you start to get the nutrients that have been missing for years.

Coeliac disease has a genetic factor (there is a 10% chance that an immediate relative will have it if you do), so your dh's problem is relevant to ds2.

Schilke your son's symptoms sound identical to my DD1's prior to diagnosis. Does he vomit at all? As well as being either constipated or having diarrhoea, having the physical attributes you describe (distended belly, no bum and stick legs), being constantly lethargic (she would sleep for 12 hours at night and 3 hours during the day) she also vomited at least every 2 days or so. Also, she had gained no weight in a a year and had dropped off the bottom of the chart. So no, I don't think you're making a fuss and you should push your GP for a referral to a paed/gastroenterologist who can do the biopsy on your son and get the diagnosis confirmed.

I know some people do go without the biopsy because they are so sure they are coeliac but then it can be difficult to get the food on prescription and as you know, it's quite pricey!

As clerkkent says, there can be a genetic link for coeliac, so your DH and his sister should definitely get themselves checked, but as they're adults, it's up to them...but your concerns for your DS are definitely valid. After DD1 was diagnosed, she was a changed child within a fortnight - watching her shovel in pasta rather than picking at the odd mouthful used to make me cry! She's gained nearly 40% of her then body weight in a year and grown 11cm .

Good luck - let me know if coeliac UK won't help.

PS - sorry for hijack, but clerkkent - what happened with your son? Is he any better?

tkband3, we were sure DS must have coeliac disease, but we were wrong. The biopsy was negative. He then had a lactose test, also negative, and finally a course of antibiotics for giardia. Since then (about a month ago) he has not had any stomach cramps. This is the longest period without pain for 18 months.

We are not sure where he could had contracted giardia - a watersports course in the local lake is an unlikely possibility. Giardia is usually short-lived (6 weeks), but occassionally lasts much longer. Untreated it can cause damage to the villi. We are just glad the gastroenterologist thought of it.

He has never vomited with it and his symptoms seem less severe than your dd's. Part of it is just he looks so strange. i know children are different shapes & sizes, but keeping trousers on is a nightmare as he has no bottom at all. His arms look like twigs.

The tiredness has not come back yet. Can some people suffer less severely? He was almost 5 when he went wheat free and I wonder if the wheat problem had built up over the years. The symptoms went quickly once we cut wheat out although remained slightly bloated. Could it be that it would get worse again if we left him on wheat longer ?

Also, his tummy looks fine in the morning, but by the evening it looks like a balloon. Is that a coeliac thing or would it be bloated all the time? Our GP only has appointments in the morning, so when we went his tummy looked relatively normal.

Thanks for your replies tkband3 and clerkKent - sorry to bug you with so many questions. Hope your children are doing ok. I'm going to make an appointment with gp next week.

I'm sure that the symptoms are different for different people - OH's nephew didn't suffer with vomiting, but terrible stomach cramps and bowel problems along with tiredness. It could be that the reason your DS's tummy stayed a bit bloated even though he was wheat-free is because he was having gluten in other forms (rye, oats or barley) so his system wouldn't have been completely clear.

Certainly DD1 would be fine in the morning and would frequently tuck away huge bowlfuls of shreddies, but the knock-on effect from that was that she would eat little else all day and get progressively more tired. She was much younger than your son, so wasn't able to communicate to us that she was suffering (I still feel so that she suffered for 2 years before someone finally listened to me and realised I wasn't being a neurotic mother...sorry, nearly started to rant again but it still makes me ).

We've just had our quarterly mag from coeliac UK and it's coeliac awareness week next week. There's bound to be features on it on the radio and TV so worth watching/listening out for them for info.

Best of luck - any more qu's don't hesitate to ask.

clerkkent - so pleased for you that you got an answer for your DS and that he is pain-free.

Schilke, your DS's symptoms sound like my DD- except she has never had the horrid poo bit, however her peadiatrician has told us that she would be very surprised if her coeliac screen comes back negative given her history and how symptom free she is when on a wheat/gluten free diet. (due to go back on w/g after half term and then be screened.

I can totally relate to the no bottom/stick thin arms etc and very little weight gain. She even managed to put on half a kilo in a month since going w/g free which tells me something, she also has a lot more energy aswell.

My advise would be to push hard with your gp for a coeliac screen.

Symptoms can be different in everyone. I wasn't diagnosed until I was 35 and had been asymptomatic for the majority of that time, and in fact was overweight when I was diagnosed. I never really had any symptoms at all as a child, it only really struck after my 20s with recurrrent periods of bloating etc (which was put down to irritable bowel) and several outbreaks of DH type rashes (put down to some form of herpes virus). It wasn't until after I had a stomach bug and the symptoms didn't clear up that I was referred to a gastroenterologist, and thankfully I was covered with work for private healthcare or I would have had to wait at least 6 mo for the referral. It can be difficult to get your GP to support you, perhaps there is another doctor at your surgery who has a particular interest in gastric problems, however I would have thought that your DS's drop from 50th centile to 9th would be ringing alarm bells. Even if it isn't coeliac...he needs a referral to a gastroenterologist IMO....
Good Luck xx

You can't join CUK until diagnosis. Keep DS2 on gluten and have the blood test done by your doctor - stay on gluten until you get the result as you must be eating gluten for the biopsy. You will get a lot of support here: members2.boardhost.com/glutenfree/ There are a lot of members with young children who have been diagnosed. If the blood test is positive but the biopsy negative your doctor may be willing to assume DS2 is in the early stages and "treat as coeliac" with prescriptions. In the very early stages the biopsy can be negative (or sometimes they biopsy a bit which isn't showing damage). If the biopsy was negative then it would be worth considering the gene testing which can rule out the coeliac condition (but doesn't guarantee DS2 would develop it if the gene was present - it only indicates he might develop it, it does, however, prevent years of worry wondering if they are likely to develop it later if the gene isn't present. You'll find details about the gene test on the supplementary board attached to the link I give you above. Good luck in getting a speedy diagnosis.

I didn't mention that DS was positive for the gene test - so might develop coeliac disease later in life. I was diagnosed (symptom free) in my early 40's, after my brother (severe symptoms).