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Member Since 29 Mar 2009
Offline Last Active Feb 23 2010 09:11 PM

Topics I've Started

A Little Help Understanding My Children'S Results Please?

17 February 2010 - 04:43 AM

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!

How To Get A Partner To Understand And Support?

13 December 2009 - 03:40 PM

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.

My Son's Journey To Diagnosis, Not Over Yet

05 October 2009 - 03:21 PM

Now, we're Australian, so our system's different to many of you, so if anyone has a clue about it in Australia, let me know. I'm keen for everyone to give me advice though...

My son, Raven, is 4. He's been sick since he was very young with various ailments, nothing *serious* per say, things like breathing problems, very early asthma, worst 'growing pains' out of all my children (I have 5 children), very light sensitive and pupils which are always too large, very pale/nearly translucent blue eyes. As he grew, he got worse symptoms... and more. He had real problems with toilet training (he's still not completely), he has constipation/diahrea, bloats that make him look larger than a pregnant woman in comparison, pain, unable to walk when he's having joint pains which are frequent (4/7 nights), quiet, larthargic, flat, his weight and growth were too slow, particularly his weight was always under the percentile.

Under these conditions, we were sent to to see a pedatrician - and the diagnosis was.. He has an undisclosed anti immune disorder. Nothing to be worried about we'll see how it develops. What???
NOT good enough, how bad does he have to be before we worry???

So, I found a really good GP who gave him a DNA blood test. It came back with both Ts Positive for Coeliac's Disease. He's back on the 'waiting' list to see a ped at the public hospital. I've been advised to take him off gluten and get a food diary happening. They didn't want to do the biopsy before because it was too intrusive for the little man. My GP is sensible, she said we'll you could wait until he's a teen and keep him off gluten until then, but he'll be questioning why. There will always be a question mark about it. He's already questioning it.

Family background is: I've got Coeliac's Disease but not by biopsy. Its pretty obvious though, DNA test says positive potential, I've had positive bloods to the 'screen' they currently use (0ne came back negative though - but I was pretty much off gluten at that stage). Was misdiagnosed with IBS a decade ago with chronic diahrea - it got worse and slowly developed other problems, gall stones (had it out whilst pregnant), asthma, hay fever, skin rashes (really thick across my hands), thyroid issues, weight problems and fatigue. Hell, I've been quite active physically but not felt fit - that is a frustrating and bewildering thing. Lactose intolerance etc. So, I tell the dr I'm seeing at the time, I can't do this anymore, I'm going off dairy. So I did, I got worse, alot worse - I just couldn't be in public without fear of embaressment, I was doubled over in pain for days at a time, I had joint pains, my hayfever out of season was going crazy. So, two months after ridding myself of dairy, I say I'm going gluten-free. In three days, my bloats/diahrea gone. Other problems seem permanent, but a bit better, that was about 9 months ago. Going on this, my GP tells me - OK you've probably got it, up to you if you want the biopsy, but in your case it will be a painful challenge. This is good enough for me, I think I'm diagnosed. My mother wont adm,it it could be her too, but shes got all signs/symptoms i do plus shes diabetic. Thyroids are big in the other side. His Aunty on his Dad's side has it too. Both sides seem to have it genetically...

I worry I'll get the same response from the public system again. It will be expensive to go privately, and we're pensioners as my partner has a mental illness and I care for him. It's crazy screwed up system. There are other health concerns across my other children too which have not been solved publically. I have a right to be concerned I think. Oh, and we're in Tasmania.

Any advice? He's already hating the gluten-free diet, its only been four days.

Hi, New And As Yet Undiagnosed

29 March 2009 - 04:05 AM

HI everyone,
Sorry LONG!
I'm an Aussie mother of 5, a homeschooler and having problems of the intestine variety... oh, not just me either, some of my children and my mother!
THe more I read about the symptoms and related illnesses of celiac disease, the more I'm convinced I have it.
Lets see...
:huh: Stomach cramping, bloating, extreme pain/discomfort
:huh: diarrhroea and have done on and off since I was 20, however it picked up after the birth of my first, and steadily gotten worse - was diagnosed with IBS and told there was nothing I could do about it
while I was living in another stqte I asked my doc to give me the prelimanary blood test to see if I had any of the markrs of celiac disease, it came back positive but was waiting so long for the biopsy I moved interstate.
:huh: after several years of trying to find another good doc who'd listen to me (because I'd had that initial diagnosis of IBS they stone walled me), and during that time my son started having symptoms, he's 3 1/2 now, but ended up being a intestinal parasite, but once confirmed it was gone he's still got diahrea, vomiting and tummy pains, under weight and small in stature, we'll that actually put a halt on my continuing diagnosis too as I got the bug too, All gone now (and I didn't have that bug for 14 years!).
:huh: I was getting really depressed and embarressed to leave home because I felt I'd have an accident just before Christmas, yes I've felt that way on many occasions. I told my doc I was going of dairy to see if that made any difference. It didn't. I then told him to give me those tests again, but this time it came back negative. ARGJ!! After several months of being off dairy I told him this isn't right I was going gluten-free (at this stage I was in too much pain some days to get out of bed except to rush to the toilet, and runs so bad ... anyway he finally agreed to give it a go... I''ve been gluten-free now for 6 weeks, the pain is gone! I am slowly getting more energy! I have very little diahrea.
These are some of the other things going wrong with my health while I wasn't gluten-free:
*Skin rash/ thickening across my fingers.
*thyroid disease (I had underactive and got very overweight)
*inside mouth swellings/sores
*joint problems and pain, aching
*calcium deficiency
*libido, what libido???

Well breifly talked to my doctore, going to see him about it properly tommorrow. He told me it seems like I do have a gluten problem if alot of my problems have disappeared. He will book me into the hospital for a biopsy.
I have really some misgivings about this. I don't want to go back to that pain! On one hand if I can be diagnosed it will make it easier on my son, won't it? I'd probably do it for that reason... He's going to see the paed the end of April about his arrested growth and weight gain, his tummy problems etc. It might help for a faster diagnosis for him if I was under investigation for celiac disease myself. God knows I don't want him to suffer anymore than he alsready is/has! Also my hubby, even given my huge improvements is very reluctant to agree he could have celiac disease. It would mean the whole family going gluten-free for a start (that will be expensive!) On one hand I would stay gluten-free and take my whole family off it if I could, but my hubby would need that diagnosis to really really believe its true. Such a dilemma. My son has terrible pain, aching joints (which hubby puts down to growth pains?), diarrhoea, slow growth, so pale he glows!, doesn't have the energy a toddler/preschooler should have, tearful/irritable.

And my mother is something else! Her sister has got Chrones disease now, after years of undiagnosed intestinal complaints. She has been diagnosed with IBS, refuses to believe it could be celiac disease, has insulant dependant diabetes, has always felt unwell, lethargic, has frequent other problems. If I were to be confirmed celiac disease I might be able to convince her she might have it too!

I hope you wonderful people can give me some advice. Has anyone else gone gluten-free only to have to go back on to gluten for diagnosis? Was it worth it??? Thanks for your time in advance.

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