Toddler recently diagnosed and need help understanding results from coeliac screen

[mytype1diabetes]

Hi all,

My 2 year old was recently diagnosed with Type 1 diabetes. The routine coeliac screening test showed slightly elevated levels of TTG antibodies. The consultant wants to repeat these antibodies in 3-6 months time to determine clinical significance. In our letter it said "marginally elevated TTG antibodies (22ku/l), normal endomysial antibodies". I'm not exactly sure what this means, especially given one of the tests were within the normal range, and if we should be worried about the numbers. It is difficult to know if she has any "symptoms" but at the time she was diagnosed with Type 1 diabetes I noticed that her stools had changed slightly. Her stools have always been soft but now consistently a Type 6 on the Bristol stool chart. She seems to be quite itchy which is a recent thing and over the past week I've noticed s inome hair loss/thinning. It's hard to know if the itchiness is a response to the hot weather we've been having and the hair loss because of the trauma her body has gone through. I feel very worried and I'm not sure I can wait for her to be retested in 3-6 months time.

I'd appreciate any wisdom, advice or information you have.

Thanks

 

[Leadinglights]

Hi all,

My 2 year old was recently diagnosed with Type 1 diabetes. The routine coeliac screening test showed slightly elevated levels of TTG antibodies. The consultant wants to repeat these antibodies in 3-6 months time to determine clinical significance. In our letter it said "marginally elevated TTG antibodies (22ku/l), normal endomysial antibodies". I'm not exactly sure what this means, especially given one of the tests were within the normal range, and if we should be worried about the numbers. It is difficult to know if she has any "symptoms" but at the time she was diagnosed with Type 1 diabetes I noticed that her stools had changed slightly. Her stools have always been soft but now consistently a Type 6 on the Bristol stool chart. She seems to be quite itchy which is a recent thing and over the past week I've noticed s inome hair loss/thinning. It's hard to know if the itchiness is a response to the hot weather we've been having and the hair loss because of the trauma her body has gone through. I feel very worried and I'm not sure I can wait for her to be retested in 3-6 months time.

I'd appreciate any wisdom, advice or information you have.

Thanks

I'm not sure if anybody here would be able to interpret the test results but there is a support group for coeliac who may have the answers https://www.coeliac.org.uk/
Or you could go back to the consultant for advice about what they mean and what you should be doing meanwhile with diet.

 

[Inka]

Welcome @mytype1diabetes 🙂 That TTG result is in different units than I’m used to. What’s the reference range on the test result?

Edited to add - it’s ok, I’ve checked the units now. Yes, that’s slightly elevated but not dreadfully high, eg a friend’s child had a result in the 100s. So, waiting to do another test seems sensible. Do speak to your GP if you’re concerned.

 

[Inka]

I'm not sure if anybody here would be able to interpret the test results but there is a support group for coeliac who may have the answers https://www.coeliac.org.uk/
Or you could go back to the consultant for advice about what they mean and what you should be doing meanwhile with diet.

The OP shouldn’t be doing anything with diet! People should continue to eat gluten until they get a definite diagnosis. That’s extremely important.

 

[Leadinglights]

The OP shouldn’t be doing anything with diet! People should continue to eat gluten until they get a definite diagnosis. That’s extremely important.

Which is why I said she should speak to the consultant.

 

[Inka]

Which is why I said she should speak to the consultant.

You implied dietary changes might be needed. It’s really important not to remove gluten. Many parents/adults mistakenly do but it will mess up any further tests and delay any possible diagnosis, which is why I stressed that gluten should continue to be eaten while awaiting further tests.

 

[Leadinglights]

There is a section in the website I posted about the steps and stages in diagnosis in children which you may find useful and as @ inca mentions no dietary changes should be made until you have a definitive diagnosis.
I hope her symptoms are not too distressing for her as her Type 1 diagnosis is enough to cope with.

 

[Thebearcametoo]

Coeliac is one of the chronic conditions that can come hand in hand with T1D so it’ll be tested for at least yearly. Having some raised factors might just be incidental findings (you wouldn’t normally be testing an unsymptomatic 2 year old so it’s hard to know how much of the population would have incidental slightly higher markers). Retesting again sooner than annually is the best move and will give you and the doctors much more information. For now just get to grips with the type 1 and don’t worry about coeliac.

How are you getting on with the diabetes?

 

[AndBreathe]

Hi all,

My 2 year old was recently diagnosed with Type 1 diabetes. The routine coeliac screening test showed slightly elevated levels of TTG antibodies. The consultant wants to repeat these antibodies in 3-6 months time to determine clinical significance. In our letter it said "marginally elevated TTG antibodies (22ku/l), normal endomysial antibodies". I'm not exactly sure what this means, especially given one of the tests were within the normal range, and if we should be worried about the numbers. It is difficult to know if she has any "symptoms" but at the time she was diagnosed with Type 1 diabetes I noticed that her stools had changed slightly. Her stools have always been soft but now consistently a Type 6 on the Bristol stool chart. She seems to be quite itchy which is a recent thing and over the past week I've noticed s inome hair loss/thinning. It's hard to know if the itchiness is a response to the hot weather we've been having and the hair loss because of the trauma her body has gone through. I feel very worried and I'm not sure I can wait for her to be retested in 3-6 months time.

I'd appreciate any wisdom, advice or information you have.

Thanks

Whilst I am considerably older than your toddler, I too have slightly wonky coeliac panels on a repeated basis. My Endo (whom I see for my thyroid condition) is on a watching brief. This has been the case for the last 5 years.

As an adult, I adopted, on his suggestion, a gluten-free diet, but, to be crystal clear, I am not suggesting you change your daughter's diet - only reiterating my own experiences.

Antibody levels can ebb and flow, but that isn't usually extreme on a day to day basis, so retesting immediately is only likely to give a materially unchanged result.

I think, in your shoes, I'd keep a close eye on the little one. The 3 months will pass quickly - especially as you get a handle on living with a diagnosis of T1 in the family. If her symptoms get worse, or she becomes unwell, then contact your GP and diabetes team for guidance on next steps.

You have all been through a lot and only want the best outcomes. I'm sure it's a tough, tough time for you all.

 

[mytype1diabetes]

Thank you all for your kind wishes and advice. It has been an incredibly difficult time adjusting to our daughter having T1 diabetes and all that it entails. We're very lucky to have a great diabetes team and she is on a CGM (Dexcom G7) and pump (Omnipod). Overall we're managing ok but it is hard to have the kind of control we'd like for her blood glucose levels because of hormones, sleep, developmental growth spurts, illness, increase in temperature, etc. In many ways I think the diabetes would be easier to manage than coeliac so I'm really hoping that when she's retested her levels have reduced and/or within normal range!

 

[helli]

Overall we're managing ok but it is hard to have the kind of control we'd like for her blood glucose levels

As you have spotted things like hormones, sleep, growth spirts, etc, can all affect out blood glucose. Some even joke that the colour of the socks we wear can also have an impact. Then we have to carb count and there is no way to know exactly how many carbs are in the food we eat even if we weight everything - the soil an apple tree is grown in can affect the carbs in an apple, you may have a slice of cake but does it have more or less sultanas than the next slice, etc.
And the impact of all of this effort to control diabetes can have an impact on our mental health which in term will impact our blood glusose and then comes the guilt and ...
There are two points I am trying to make
- it is not possible to control diabetes. I think of it like trying to control a 30 kids in a reception class all the time.
- look after your daughter not just her diabetes. That means looking after her mental health.

This is why I try not to talk about controlling my diabetes after 20 years. The best I can do is manage my diabetes and balance that with looking after my whole mind and body.

I know it is only one word but it sends an message to our brains which leads to disappointment and anxiety when we fail to control something that is beyond our control.