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Low iga antibodies and coeliac

(8 Posts)
SpoonBender Sat 22-Oct-16 21:17:51

Just looking for some advice/ reassurance. My dc has just had some blood tests show she has low iga antibodies which means it could have given a false negative coeliac screen? We are waiting on repeat blood tests but I'm obviously worrying she now has coeliac disease. Is this a high possibility? Any advice would be great. Thanks

SpoonBender Mon 24-Oct-16 21:14:08

Anyone?

user1471537877 Tue 25-Oct-16 22:05:02

Hi spoon

I also have sub class deficiencies like your daughter, 1:9 coeliacs do!

Historically we are referred to as the 'missed' coeliacs because we were undetectable, fortunately for your daughter they now check ig levels and find some of us

I was missed for over 40 years and I was very ill by the time I was found, both my children now 12 and 14 were then also found

Hopefully they will also check if she has any gaps in her immunity, I had to be vaccinated with hib as I had low immunity and consequently had many chest infections

Life as a coeliac has become really quite easy in my 5 years gluten free, if you do get a positive diagnosis there are lots of people here who can help you

SerialGoogler Wed 26-Oct-16 09:35:39

I am going through this with DS (5). He was IgA deficient and his IGg was also negative and the consultant was a bit dismissive as he is tall for his age. As a result we went GF between consultant appointments (3+ months) and I explained the difference I'd seen in him physically. This seemed to make her take it a little more seriously so we're now waiting on the gene test. If he doesn't have it then we'll treat as an intolerance he'll grow out of and if he does then she wants to wait until he is 7 for the biopsy as reintroducing gluten could affect the enamel on his now-forming adult teeth. DS is v fussy which makes a naturally gluten free diet impossible but there is enough 'processed' GF food to keep him happy and I make my own pizza dough, pancakes etc Everything is 3 times the price though.
But of all the health conditions he could have had, this must be one of the simplest to treat. It's NOT treating it that would have me worried about his future health which is why I want to know if he definitely does or doesn't have CD. There are other auto immune conditions in my family and I want him to take responsibility for his health as he gets older and for him to have access to regular monitoring from a consultant.
All my research (and the gastro) confirmed negative blood tests are not 100% and if there is still clinical suspicion on a biopsy is the gold standard.
I wish I had been taken seriously before we went GF as I knew it would delay diagnosis but I honestly couldn't cope with several more months of living like we were. We've now been referred to a dietitian and if he has the relevant gene/s then I hope we have some more formal support from the GP/hospital.
All this is to say whether your DC does or doesn't it will be better to know and be able to deal with it.

SpoonBender Wed 26-Oct-16 09:53:59

If you don't mind me asking what symptoms did your DC have that made you suspect coeliac? My DD has always struggled with weight and slow growth, she is a fussy eater, gets full after a few mouthfuls and says her belly hurts. I think she is tired a lot. I just worry that the more I've read about it I relate her symptoms.

SerialGoogler Wed 26-Oct-16 12:46:35

TMI -His main symptom, or so I thought at the time, was his terrible poos. I can count on one hand how many formed poos he had. And they absolutely stank. I would dread going out as I never knew when he would need to go and he would made so much noise and mess I would go through tons of toddler wipes.
He's not a confirmed coeliac but my DS is above average for height but he was so so skinny. And pale (although GP dismissed that). He had no stamina, bags under eyes, constant colds, random unexplained fever etc. He never complained about stomach ache but he is a stoic kid. Saying that, when he accidentally gets gluten now he reports stomach ache. I assume he was either used to the feeling before or he is now more sensitive.

I thought for a long time is was toddler diarrhoea but when I bought a double buggy to accommodate him and his brother (then around 2) I realised this was not normal!

We've not got a diagnosis but I know for sure it is gluten and not wheat (learned the hard way!) and our quality of life is so much better now. Plus the consultant seems to be taking me a bit more seriously.

He doesn't fit the traditional 'coeliac' child mould but from what I have read, it's not always a failure to thrive, it can be triggered any time and there are plenty of tall coeliacs!

user1471537877 Wed 26-Oct-16 20:07:43

Spoon

Both my children had opposite symptoms but all come under the coeliac umbrella

DD had reflux, slow growth, reflux and constipation. DD also had asthma and allergies

DS often had sore tummies, loose stools again slow growth and lack of energy

With both kids we had a period of rapid growth when taken off gluten, DS commented that his tummy wasn't sore anymore and DD's asthma became dormant

SpoonBender Wed 26-Oct-16 20:52:41

I think I'm hoping in a way it is coeliac because it would answer so may questions but I'm dreading it because it will be a whole lifestyle change. She suffered with reflux and what they thought was a milk allergy as a baby but they never really got to the bottom of why she was so slow to gain weight or grown. I felt like a paranoid first time mum but I've always thought something isn't right.

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