>128 u/ml What now?

[Pozzled]

I've just discovered this forum and hope you can help me. 

My 10 year old daughter's test results came back, saying: Transglutaminase level >128 u/ml, suggestive of active celiac disease'. Am I right in thinking that this is a pretty high level and likely to be fairly conclusive? With the holidays coming up, we won't be able to see the doctor for a couple of weeks. Is it likely that they will do a biopsy to confirm? (We're in the UK so NHS doctor). 

just beginning to think about how this will impact my daughter in the long term... I'm also fairly convinced that I have celiac disease as well because I found myself nodding along to do many of the symptoms I read about. 

It's all a bit scary. 

[Elliottohonedhome]

Personally, I'd take her off gluten right away with a number so high. But you are her mum and it's your choice.

 

Some tips for going gluten free:

Get a new seperate toaster.

Get her her own cutlery and utensils. Try to get stainless steel if you can. Do not use scratched bowls, plates or aluminium or non stick pans that have been used for gluten.

Try to give her a seperate cupboard for gluten free things if people in the house are gluten eaters.

Change out shampoos and soaps for gluten free versions.

Be stringent when it comes to hand washing.

I'm twelve months in. It's hard but gets easier as symptoms subside.

 

That's all I can think of right now off the top of my head. Good luck to you and your daughter. If I remember anything else I'll pop back into this thread. Other members more knowledgeable than me will surely have some advice for you 

 

Be well

Elliott

[Pozzled]

Thanks for the response. I don't want to stop her eating gluten until we have a firm diagnosis from the doctor, so there are no issues further on. It is difficult though as I hate the idea that we're feeding her something that is making her ill. Thanks for all the tips. I'll have a good deep clean of the kitchen over the holidays and start sorting out a cupboard for gluten-free. 

[GFinDC]

Hi Pozzled,

I agree, she should stay on gluten until all testing is completed, including the endoscopy.  But, she doesn't need to eat a lot of gluten to keep the antibody reaction going.  If she eats just a half slice of regular wheat bread daily that should do it fine.

She may feel better if she stops eating all dairy products for a few months also.  Celiac impairs our guts ability to digest dairy sugar (lactose) and that can cause unpleasant GI symptoms.  The inability to eat dairy is sometimes temporary and may go away after 3 or more months gluten-free.

Celiac is linked to several genes so it may be on your or her fathers side too.

The antibody level she had does sound high.  Usually the lab provides the value ranges with the results as they vary by lab.

The celiac antibody panel includes several tests:

DPG IGA

DGP IGG

EMA

ttg IgA

total serum IgA

They might call that a full celiac panel.  The full panel is what you want for testing.  She probably had just the ttg IgA which is often used for screening.  But it doesn't include the other antibodies like IgG and EMA.  So you don't have a record of what those numbers are.

There is a newbie 101 thread in the Coping With section that has some tips in it.

Welcome to the forum!

[Pozzled]

Thank you. Yes, she just had the ttg IgA done. The reference levels were <7 negative, 7-10 equivocal and >10 positive. So 128 certainly seemed pretty high. I

 Thanks for the tip on the Newbie thread, I will have a look. I have also joined Coeliac.UK which looks really helpful in terms of shopping for gluten-free. 

[Beverage]

Mine were super high like that and I decided to go without the biopsy, as it does have its risks and can miss the damage entirely and leaves you in limbo if negative.  I also got the DNA test (for me mentally to commit to being gluten free) which showed positive on HLA-DQB1*02 (I was negative on the more common DQ2 & 8).  I'm not sure how it is in the UK, but in the US, with a positive blood test, positive DNA, and response to the gluten free diet (my response was amazing in a good way in the first month), that is considered to be enough for an official diagnosis.

[Pozzled]

  On 12/24/2018 at 9:31 PM, Beverage said:

Mine were super high like that and I decided to go without the biopsy, as it does have its risks and can miss the damage entirely and leaves you in limbo if negative.  I also got the DNA test (for me mentally to commit to being gluten free) which showed positive on HLA-DQB1*02 (I was negative on the more common DQ2 & 8).  I'm not sure how it is in the UK, but in the US, with a positive blood test, positive DNA, and response to the gluten free diet (my response was amazing in a good way in the first month), that is considered to be enough for an official diagnosis.

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Thanks.  Apparently in the UK they do often take that approach with children,  whereas adults nearly always seem to have a biopsy. It does depend on the doctor though. 

I'm just finding it really frustrating at the moment because we can't really do anything until we see the doctor in 10 days time. And of course in the meantime my daughter is feeling rubbish.  

 

 

[lyfan]

Carol-

 Fifteen years ago most physicians couldn't SPELL Celiac. In the UK, US, or any other variant of the spelling. Today there is certainly a lot more awareness and a little more knowledge, so do not be afraid to question anyone and everything you are told, unless you find one of the rare few specialists who knows the matter.

 You have reason to suspect your daughter has celiac. It is also possible that she has "non celiac wheat sensitivity" which means she does not have celiac--but is poisoned by wheat and gluten and needs to avoid them. Same diet, same regimen, and no one really understands the underlying issues.

 So as a matter of practicality, I would suggest discussing this with her, that "wheat" gives a number of people bellyaches and worse, and that fortunately, she can try simply AVOIDING GLUTEN to see if that helps. No needles, no ouchy stuff required. Avoiding gluten can be very very tricky and even adults can find themselves being gluten poisoned despite paying attention to it--but it is EASY ENOUGH TO TRY.

There are many gluten-free baked goods and recipes, and there any many foods (meats, vegetables, nuts, rices) that are naturally gluten-free and easy enough to find. Two weeks of avoiding gluten and if the aches go away...You've got a good start.

You'll still want to explore your own testing, especially the genetic tests (which probably cost tends of thousands just ten years ago, but they're way less now) to confirm if you both have the genes indicating celiac.

In the meantime, it is totally normal to feel overwhelmed by all the information and conflicting advice you'll find on the subject. Not to worry, you will learn which resources and suppliers can be trusted. It just takes some time, like learning to parallel park a car.