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cosmicmouse

Member Since 12 Feb 2014
Offline Last Active Jun 15 2014 01:22 PM
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Topics I've Started

Test Results - Opinions Please

09 June 2014 - 04:03 AM

Finally got copies of my daughters test results as we've ditched our paed in favour of a coeliac/gastro specialist. In short her antibody screen was negative, but as there is Coeliac in the family we took her gluten-free and she improved.

At first glance, I don't think she's had the full set of bloods done..? Can someone clarify? And the genetic test is all gobbledegook to me - can anyone make sense of it?

I'd just really like to be informed as possible for our appointment Weds.


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Tissue transglutaminase IgG - Negative

IgA high sensitivity assay g/L result = 0.23 (0.2 - 0.7 Normal)

HLA Typing Test Results:

Test results - HLA-DQA1*02, DQA1*05; DQB1*02, DQB1*03

Definitive results - HLA-DQA1*02:01, DQA1*05:01:01G; DQB1*02:02/12, DQB1*03:01/27-29/35/42/44/47/49-51/83/84N

Positive for the DQ2 (DQA1*05/DQB1*02) genotype associated with Coeliac Disease

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Not Sure What Testing To Push For

11 May 2014 - 11:53 AM

My 2yo has dairy intolerance, and acid reflux. Her grandmother has coeliac disease.

It was mentioned some months ago that we should rule out celiac disease as a potential cause for the acid reflux. A blood test (I believe IGG and IGA) was done and was negative. No figures were given. The paediatrician just wrote to us and said the results were "reassuringly negative".

However, I've been reading more and more about acid reflux in young children (vs infants) and there seems to be an undeniable link between gluten and reflux. So with not much left to lose, we embarked on a gluten free diet. By day 8, she started seeming more settled and on day 9 slept for 6hrs straight for the first time in her life. Normal for her is 3hrs at the most before waking for a breastfeed to go back to sleep. Since then she's continued to sleep much better, and is eating much more than before. A positive effect definitely and I am now pretty sure she is a coeliac like my mum.

Having looked again at coeliac testing, I don't think she was consuming enough gluten to generate a positive result. A "heavy" gluten day for her then would have been quarter of a slice of toast, 2 breadsticks, a cracker and maybe 10-15 pieces of pasta. Not enough, I don't think..?

I want her retested. But I don't think I will be able to get her to eat enough for the blood test :-(

I'd rather not push for biopsy, but I don't know that I've got many other options. And our dietitian said there is no way the paed would diagnose on neg bloods + family history + positive reaction to gluten free diet.

Is biopsy our only option? And does this also depend on a very gluten heavy diet, or would her previous reflux inducing diet be enough?

Any advice appreciated

Dietitian

07 March 2014 - 09:54 AM

In your experience, would a Dietitian have the knowledge/experience necessary to interpret blood work looking for celiac disease?

We're waiting on my daughters blood results. All the paed's secretary will tell me is that there is "a comment" against either the IGA or TTG result. She won't tell me any more. But on hearing we are booked to see the Dietitian Monday morning, she faxed the results to her.

However, I'm now wondering if the Dietitian will know enough to give us the results...or even been permitted to, rather than the Paed?!

I'm guessing something has shown up, or surely they'd have just said they were normal???

I'm in the UK,btw x

How Do Igg/iga Levels Develop?

26 February 2014 - 07:55 AM

Just interested really.

I just had my coeliac blood test back, which was thankfully negative. I got tested mainly because my mum is coeliac, and my daughter is in the process of being tested. I have had vague IBS symptoms for forever, but nothing definitively coeliac. I figured now would be a good time to get tested.

Anyway, I notice that both my IGG and IGA figures are at the higher end of normal.

IGG - 11.5 (range 6.0 - 16.0)
IGA - 2.1 (range 0.6 - 2.8)
IGM - 2.0 (range 0.5 - 1.9)
Serum total protein level - 69 (range 60.0 - 80.0)

Do these levels gradually increase over time and it's when they hit a certain level that coeliac is triggered? Or do they tend to be static? Or are they fairly meaningless unless over the normal range?

Understand that I'm not trying to look for a diagnosis that's not there. I'm honestly interested in how it works.

Coeliac Toddler?

12 February 2014 - 11:40 AM

Just wanted to share our story in case it rang any bells with anyone. We're awaiting blood tests on the 25th Feb, but that feels like light years away right now.

My daughter was fine up until about 14mo, when she started having cups of cows milk for the first time. She was/is breastfed. She was up in the night screaming in pain if she'd had milk in the day. Her face came up in a horrible rash that wouldn't go away. It didn't take us long to realise the milk was the culprit, and we took all dairy out of her diet. Followed by my diet when we realised she was reacting to that too. Things improved greatly.

But by 16mo, she was back having these screaming fits every few nights. She thrashes around, arching her back, screaming completely inconsolably. The only thing that soothes her is breastmilk. But if the flow of milk slows, she's beside herself again waiting for the next let down. She will eventually sleep, but only for an hr or so and will start up again.

All of the back arching and need for fluid lead me to suspect she had silent reflux/heartburn. She was put on medication for that, and is much better.

She then had a random seizure at 20mo and her meds were changed just in case they were the cause. No reason for the seizure was found.

However, now at 21mo the bad nights continue albeit less severely than before. And maybe 2 or 3 nights a week of hourly wake ups rather than around 5.

We finally saw a paediatrician this week, and took a full history. She thinks it's either "just" reflux that will eventually right itself, or theres a chance that it's actually coeliac disease that's the root cause of all her problems.

The more I read, the more I think she may be right.

My mum is coeliac. I think that the gluten has been damaging her gut since weaning at 6mo, meaning she became lactose intolerant by 13mo. Removing dairy has helped that, but as she's still on gluten, the reflux is getting worse and the meds can't keep up. And/or she's just got raging belly ache, and that's causing the awful nights.

But I'm now worried that the bloods will be negative and we'll be back to square one.

Can anyone provide any reassurance?