This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc. Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful?The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients)Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients)Gluten-Free Alcoholic BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
I hope we have the Enterolab test here! That would be good, I know they are very sensitive to cow's milk, only two of my children seem to be able to use it regularly - and even they have been known to miss it for a couple of weeks here and there. If we gave my youngest daughter any at all she would be sore and blistering all of the time instead of barely keeping it at bay...
SO my hope is they'll have that test, going on the fact that I'd hate for them to suffer any more than necessary til diagnosis. Going over the test results again it says on the bottom they state patient is at risk factor of 22.9% on all the results we've gotten back at this stage. Then they give another set of generals about all kinds of genes and numbers like this DQB1*02 and typing in the general population versus the genes of most celiac portion of the population. Background info it's titled as. As far as I can see there isn't any indication of the copies of DNA, but yeah, all children have the same results so I'd suspect as much - My partner and I have one gene positive each, but don't have the results, will have to get those off the doctors.
I just hope we can get a paed who knows what they are doing and/or will listen to us! I'll ask for the Enterolabs, I think I'll also just print out these pages to bring along if you don't mind!
Thanks so very much, Julie.
The tests do not seem as definitive as they could be, do they? Nothing seems 100%, and yet the symptoms are there and causing issues. There is obviously much more to the condition than the medical profession knows yet, its a grey area. Its obvious too that some doctors have more of a clue than others too.
I don't pretend to understand the DNA or the sequencing but I thank you Nora, and Midwifemama for attempting to explain. Maybe genesists don't really know either, it is relatively a new thing isn't it? For this reason I doubt the doctors have any real idea either, as they go on these journals and theories too. That does make it difficult for everyone else who are actually suffering to get a clear diagnosis. I think that this area is still being discovered and that many people are undiagnosed or are finding it more difficult to get definitive answers as its all clouded and confused on different levels. But this is a modern western medical world view I think, hopefully it will get easier to pin point when they get more studies done in the area.
If it was the simpler method long ago the diet was enough as a diagnostic tool! And dramatically less stressful too.
Thanks for all of your help, I think I'll have a better idea of how to approach the doctors when I finally get to go see them about it all.
You have 5 children? Me too obviously. Fortunately it's free but the unfortunate part of it is it takes a long long time to see doctors, and there is less quality in care unless you are private (my guess its similar to being insured or not in the states)
Ok, you have helped in your reply... The reason why we wanted a diagnosis for my 4yo was really for his father's sake (and his future teenage self), if we had the positive proof my son wouldn't rebel later on and say "oh I'm not eating gluten-free anymore no one even knows if I am or not?" plus my husband is reluctant, but of course he sees the positive outcome of his and my gluten free changes. No they told us to keep all the others on gluten for further testing. I am in fact dreading putting him back on gluten (and myself - I won't do the challenge considering how well I am compared to a year ago), because I don't want him to go backwards. At this stage he is always questioning my, either way. Such as "will my tummy always be gluten free mummy?" or a more common one, "does that have gluten in it - I don't want it." I don't even know IF I could put him back on gluten as he won't eat it anyway. Of course, he never gets offered gluten at home anymore but before my mother got used to the idea he actually questioned her and refused to eat something at her place - he certainly remembers the pain now! Of course, I could let him do the challenge when he's older and it's his choice, I'm more comfortable with that then reverting. My husband wants me to do the challenge too (he's much more scientific than I am - needs that quantifying truth I guess).
Enterolab testing - is that the challenge/biopsy? If so then all my doctors have insisted that they all be tested and go through the challenge if necessary because "it's the gold standard in diagnosis" it's like they are quoting text books! I don't think any of the doctors or Paeds have had any real experience with it so far. My youngest daughter is the exception (as she has been admitted to hospital because of all this) in who we get to see, next time instead of a doctor in training to be a paed we get to see a full paed which means to us at least we might get somewhere further. You see, even as bad as sounds, we've already been through and been stone walled when they decided my 4 yo wasn't bad enough to do anything about! Thats when I demanded my GP give him a DNA test and now as that was positive they are taking him on again. Really, it does seem I am in a backward little place when this sort of thing happens. (I live in Tasmania Australia) Raven had tested positive at that stage (but I don't have all the actual results) for an anti-immune disorder (not a specific one though), anemic, allergies. It was very much a bad time in our journey to be told that it just wasn't enough to go further in testing. After we got the DNA test back from our GP she told us to put him on the gluten-free diet but refered him back to the hospital.
The only reason why they are taking notice of my youngest is the extreme dehydration and extreme weight loss since Novemeber (she lost a full kilo in a month at two!)
Yes, I'd love to just take everyone off the poison but my husband wants the full diagnosis. It's frustrating! Also we're acting on what the doctors have suggested so it's present in their systems when testing. At this stage it's taken 2 years from when my 8 yo started complaining about pain and constant diahhrea til today and still not fully diagnosed any of them. I was misdiagnosed 11 years ago with IBS but they ran the wrong tests on me only a colonoscopy not the biopsy (as I was overweight from gaining weight with thyroids) - he made the call based on my wieght - this could have been sorted way back then.
Thanks for the reply Nora, I wasn't aware of the other tests I could ask for so I will definately be asking for those. the IgG one, as for the copies of DNA strands, I'll check out Wiki because that is a bit confusing.. I have one gene that is positive but the children have both - at least all that have been tested, and my husband has been tested but I'm not sure of his results yet. There certainly wasn't any indication on the tests about that.
I am fairly certain this will help and I am so happy you were able to give us some help, if to give our children a decent pain free life is our top priority, I certainly don't want them suffering like I have if I can find a way !!
Thanks again, Julie.
I don't know where the poll part is but... I was very recently diagnosed with sleep apnea. Whether directly caused by celiacs or because I am overweight so indirect cause I'm not sure... but I do have the other neuralogical probls a lot of celiacs have like mind fog, memory loss etc.
My children aren't diagnosed yet, but I'm pretty certain at least three of five have it!
My eldest girl is 10, she's the size of a 6 yo in height, but she wieghs 45 kg
My eldest son is 8, above average height and extremely thin, he's not breached 30 kg yet
My middle boy is 7, he is hovering around the 25%ile, but he is also thin (not extemely - he could be a body builder when he grows up), he's heavier than his older brother but not by much!) he was around the 10%ile but he broke his femur and the one good thing that came of it was he gained that 15% in the next year.
My next son is 4, hes very thin/short, 10 %ile... he can wear 00 sized clothes meant for a 6 month old!! He can also just wear size 4 in some sizes, but he needs a belt to keep them up. He has a huge belly though, from bloating but since going gluten-free that is flattening out thank goodness!
My youngest daughter is 2, she was over the 100%ile for height/weight for the first six months of her life. When she started eating solids, that dramatically changed. She's now lucky to keep 10%ile, she often drops below accepted age's height/weight ratio - which is a concern. She is very thin, doesn't bloat either, she is totally flat tummy, you can see her ribs, scary!
So yeah, its common I think for children with celiacs to be short of stature and thin, but there is also those who are refered to as 'starving for nutrition' like myself who weigh heavier!
I was having symptoms even though I was on a strict gluten-free diet, then I took a closer look at what I was consuming: Toothpaste/hair care products/medication - they all had gluten in them!! It's in a lot of make up too, but since I don't even use it no worries there.
It might be sneaking in from lots of different sources, so my advice is to really look hard at what is going on, the above advice about other intolerances and cross contamination is all sound too, these are the only places I can and do occasionally get glutened now. And it does take time, but my GI symptoms were gone much faster than the other issues though!
Hi, trying so hard to get some sense out of my doctors! I finally just asked them for the results so I could post here I've been told by one doctor there is positive results and another said negative!! I should also say I do have Celiac's but my bloods have been tested Iga ones, one time came back positive, another time negative.? confusing, anyways, all of my children have various symptoms, some worse than others (my live is so much more worth living now I'm gluten free!!) But now its the stress of trying to get some sense from the doctors. I would love, ideally, to have some back up knowledge from these boards to know what I'm arguing for with the peds at the hospital, as I have two children waiting the next level of care from the specialists. Thanks in advance!
Daughter, 10, Celiac Tests:
Gliadin Antibodies IgA 3 Units (<20)
Tissue Transglutaminase IgA Abs 1 U/ml (<11)
Tissue Transglutaminase IgA Abs 5 (<11)
DRB 3/4/5 DQB1 DQB1*02pos.
BPB1 DQA1 0302neg DQA1*05pos
Symptoms: GI issues, overweight, starving all the time (even though we do feed her enough!), complaints of achy bones, emotional issues like extreme depression/wild mood swings.
Son, 8, Celiac Tests:
Gliadin Antibodies IgA 1 units ( <20)
Tissue Transglutaminase IgA Abs <1 U/ml (<11)
Tissue Transglutaminase IgA Abs 2 U/ml (<11)
Clinical notes say the results have been amended, whatever that means!
DRB 3/4/5 DQB1 DQB1*02pos.
BPB1 DQA1 0302neg DQA1*05pos
He has had diahhrea for a long, long time. Aching bones, very thin (but above average height), tired all the time with huge dark shadows, IBS symptoms like wind pain often.
Son, 7, Celiac Tests:
No results yet
He had stomach complaints but rarely voices them (he's the suffer in silence kind of little guy). He's had a very badly broken leg at age 5 (well a week off his birthday that year), some concerns about calcium deficiencies as it was a very difficult to get break (running down a hill this kind of break is usually related to high impact like car accident/ski injuries).
Son, 4, Celiac Tests:
DRB 3/4/5 DQB1 DQB1*02pos.
BPB1 DQA1 0302neg DQA1*05pos
I have no copies yet of his other tests. He has been the worst by a long way: all the classic symptoms. Currently eating no gluten and in the 4 months he's been off it he is nearly a normal boy (but he's going to have to go on the gluten challenge now).
Daughter, 2, Celiac Tests:
DRB 3/4/5 DQB1 DQB1*02pos.
BPB1 DQA1 0302neg DQA1*05pos
Her other tests have not been preformed yet. She has been extreme but for a shorter time frame. Diahhrea for months, to the extent she had to be hospitalised due to dehydration. Often tender around her stomach/nappy region. She is very thin but unlike 4 yo son does not bloat. Her diahhrea has been green and orange at times. While she began life above the charts in height, after eating solid food has dropped fairy steadily to being 10 percentile or even below the chart!
There was a similar post here. But this is completely different too.
My partner is always undermining my pov when we are talking to other people about ceoliac disease. It is just that I haven't got the biopsy, but the tests other than that have all been done and come back positive including the DNA test, which is more recent. I went gluten-free when I couldn't go out without fear of having accidents. It was a lonely painful time as I was often doubled over in pain for days at a time. 3 days later after going gluten-free things started improving.
Before I had the DNA test done, he was always saying he had his doubts, he knew I had it bad but he still seemed to have doubts. It was enough for me to have 'proof' that it was real and not just in my head. My doctor all but confirmed it on the basis of my fantastic improvements on the gluten-free diet. He now grudgingly accepts I probably do have it. Not too long ago he tells me that when I'm feeling better I should go on the gluten challenge and get a biopsy. I was so upset considering how I was when I get glutened! I was angry and upset. If it was good enough for the doctor and myself why can't he just support me on this?
And then there is the children... At least 3 suffer from Diahrea, ALL the time (or did). Raven who I have previously mentioned has been the worst, bloating and classic symptoms since he began to eat as a baby. I had no idea then but I'd accomodate so he wasnt in so much pain all of the time during nappy changes... I talked often and with many drs who didn't point us in any useful direction.
Until recently I got a good DR who got both of us the DNA test, while mine was positive it was just with one marker, Raven has both! The dr thinks we should go ahead with the biopsy for Raven's sake, so it can be proven and when he's a teen he'll KNOW, but we can wait and just keep him gluten-free until then. He's improving but its been slow! My partner has been all about, "why isn't he better yet?" "When is there going to be some sign he's getting better?" that was in his first month. Its taken a couple of months to see some kind of improvement, he is not so bloated, hes got energy (before he was so fatigued he rarely did anything but sit there listlessly watching TV or he might pretend to read a book - hes 4 btw).
Then his little 2 yo sister got worse with diahrea. She was so bad (lost nearly 2 kilos in a month!). I took her off dairy, she got worse (like me - I was off dairy 2 months before I was gluten-free and it was the worst 2 months of my life). The doctor insisted as she was so bad even though the results were negative to treat for nasty parasites first. She's just finished that shes still got diahrea and I want her gluten-free NOW! He doesn't want to yet. Its frustrating and I just wish he could trust me.
Yesterday I was reminded by a very nasty incident that my oldest boy, 8, has severe diahrea and has had for over a year (he says as long as he can remember). He has begged me on numerous occasions to just let him go gluten-free (and I did for a while but partner decided to put him back on full diet). He's begging me again, he told my partner he is sick of being sick. So he told him he can go off milk but not gluten until we get him to a dr and insist he be looked at separately (as they were more concerned with raven then his little sis). I'm beside myself with guilt and I am so upset as I've been worrying after the little two and had somehow put him outside my mind. Now I just want hiim to go gluten-free but partner won't let me (I'm waiting on a dr appt who knows when?), and going off milk in my experience just makes things worse if the gluten isn't removed too. The tests he insists at very least DNA before going gluten-free.
It all boils down to affording it - I think. We aren't well off at all, and this will increase our financial burdens considerably. But I don't care, I am more concerned they have quality of health, but how can I make my partner see it from my POV? Am I being selfish about this? Please help, thanks, Julie.
This is close to me and my children it's not funny.
OK, well, we went dairy free but we were tolerating sheeps fetta and occasional goats cheese. After periods of non-dairy I slowly introduced small amounts of cheese or yogurt or ice cream, but no milk. When the symptoms returned it was taken out again. Oddly enough though, we began to tolerate small amounts here and there, my son has recovered much faster than I have! We may never be completely back on it (I know I won't) but occasionally seems OK. It is said some ceoliacs can eventually reintroduce dairy eventually, but whose to say one can't learn to enjoy the alternatives more !!
We find sheeps cheese (though harder to find) has zero problems for us, and doesn't have the sharpness particular to goats cheeses. Buy an ice cream maker and make your own from what milks you can tolerate, there are cream like subs that work. I can understand not liking soy cheeses but oddly enough there might be some you can find which will be agreeable. Its just a matter of trying a lot of different products til you hit the sweet spot. I hope that helps!
I might be going against the flow here...
BUT this is what I've decided, for better or worse.
My son who is 4 took the genetic test and while his bloods were being taken they had to literally push the blood out and it was nasty. It ends up he has both genetic markers so it was a good thing he got tested. He is a different boy now he's gluten free, so much healthier. I don't regret taking him off gluten but I do so wish he didn't have to suffer the blood test but it was the only way to get the ped's to take any notice as they had previously decided they didn't want him to go through with the testing and have him symptomatic (not on my time).
But now my daughter who is just over 2 years has been taken off dairy and is getting worse, a lot worse. Yes, its a nasty business no doubt. But I am not sure I want her to go for her bloods just yet since they had so much trouble with Ravens her big bro. So at this stage she's just going to go gluten-free and when she's bigger we'll get her the full bloods (how can it hurt to wait? less torture at the moment). Going off gluten will show one way or another if she is or not anyway.
That was a few days ago .. we'd just been at the dr's about her and found out she's lost nearly 2 kilos in a month poor darling. I noticed at the pharmacy (the dr wants her to go on nasty flagyl even though there was no parasites in her faeces - that there's a new test to determine gluten sensitviity - its $30 a pop AUD, but it's worth it as its just a simple prick of the finger, a drop of blood and we've decided to go for that as an option! We'll gradually test all of the children, all but two are symptomatic (thats 3 of 5). I know it seems rediculous as it suppose to be one in 10 siblings or something isn't it?
Anyway I am rambling. I would rather wait til shes older than have a huge blood test at this stage...