Daughter type l diabetes at 19 years

[1desperateladysaved]

My household has been gluten free for about 5 years now (or was it 6?)  Since I had super-sensitive allergies to gluten all shared kitchen meals have been gluten free.  Most of the children ate here every meal before they grew up and moved on.  My youngest biological daughter began to eat outside often the last year and after that got married and moved out.  She has been therefore on a gluten diet full time since December.   I have noticed recently that she had many pimples even though, she had previously been mostly clear faced.  Last weekend she got diagnosed with Type l diabetes!  OF course, I would like to ask if it were a coincidence that she got diabetes after adding gluten to her diet, but of course, you would have to say that she needs to be tested and you don't know.

Have the tests been changed recently? So, far all of the tests we have done have been negative, so I worry that somehow are tests are not being accurate for us.  Tomorrow we go to the endocrinologist.  I sure hope the testing will be done thoroughly and properly.  Also, they will find it if it is there.  I have heard the doctors will check thyroid and celiac because of  diabetes.  Current lists of tests please as well as any other input you care to put out.

[Gemini]

Hi Dee....good to see you back!

I am sorry about the Type 1 diabetes diagnosis that your daughter had.  You do know that those with Type 1 are at increased risk of having Celiac also. If your daughter is on a full gluten diet, then they should repeat a full Celiac panel. Not just the tTg but a full panel.  Her tTg can be influenced by the diabetes alone.  I have also read that about 40-50% of young people diagnosed with Type 1 who also were found to have Celiac, do not have any Celiac symptoms and their panels can be falsely negative.  It might be a wise thing to have an endoscopy done also to check for damage because if she does also have Celiac, it is imperative that they figure it out.

Testing for Celiac panel should be:

-tTg/IgA and tTg/IgG

-DGP/IgA and IgG or the older version of the same test: AGA/IgA, AGA/IgG

-Total IgA to see if there is an IgA deficiency

EMA, which I think is an IgA test.  Mine was just listed as EMA when I had it done.  This test is very specific for Celiac....no other disease will cause a positive.  It is more expensive to do and they sometimes won't do this unless the others pop positive but make them do one anyway.

Good luck!

 

[1desperateladysaved]

Thanks so much: I am sorry to say that they did not check her for celiac even though I pointed out that I have it and it is genetic and linked to diabetes.  They said they would check, but they didn't.  Since she is grown up and moved on, all I can hope is that she will recognize symptoms if they come upon her.

[HannahBick]

On 13/04/2017 at 3:21 AM, 1desperateladysaved said:

She has been therefore on a gluten diet full time since December.   I have noticed recently that she had many pimples even though, she had previously been mostly clear faced.  Last weekend she got diagnosed with Type l diabetes!  OF course, I would like to ask if it were a coincidence that she got diabetes after adding gluten to her diet, but of course, you would have to say that she needs to be tested and you don't know.

My husband (who is celiac) doesn't want our children tested even though some are showing symptoms. 4-6 months is a very short time interval to develop full blown Type l diabetes from the initial onset of autoimmunity. I would have thought 4-6 years would have been a more likely timeframe. Was your daughter completely gluten free before December last year?

[1desperateladysaved]

No, She was a late teen and ate out frequently or all of the time the last year of home life.  Before that she would eat out 2 or 3 times a week.