7 year old son

[Cari.T]

My son’s results posted on a weekend, so of course I’m googling myself silly until I can speak with the dr on Monday! Could someone please give me your opinion? Thank you so much!

Deamidated Gliadin Abs, IgG 27 High

t-Transglutaminase (tTG)
IgA 5 High

Transglutaminase (tTG)
IgG 23 High

Endomysial Antibody IgA Negative 

Immunoglobulin A, Qn, Serum 107 (52-221)

Deamidated Gliadin Abs, IgA 5 (0-19)

[trents]

Cari, it definitely looks like he could have celiac disease. Do you have the reference range for each of those tests? They say "high" but the actual values aren't particularly large. Do you have the reference range for what is normal? Different laboratories use different standards. In the meantime, you might find this helpful: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

I know that children often show different patterns when tested than do adults.

Edited October 3, 2021 by trents

[Cari.T]

Okay let me try again! Thank you for your reply trents. The formatting is terrible trying to post this from an iPhone I’m so sorry.

Deamidated Gliadin Abs, IgG 27 High Negative0 - 19
Weak positive 20 - 30
Moderate to strong positive     >30

t-Transglutaminase (tTG)IgA 5 High
Negative0 - 3

weak positive4 - 10

strong positive >10

Transglutaminase (tTG)IgG 23 High
negative 0 - 5

weak positive 6 - 9

positive>10

 

 

[trents]

Yes, it certainly looks like celiac disease. The gold standard for confirmation is an endoscopy with biopsy of the small bowel to check for damage to the villi. But docs are more reluctant to do something invasive like that on children than on adults.

[Cari.T]

My mind is in a whirl, this was very unexpected. I brought him in for constipation and the dr ran a few tests just being cautious. But even he didn’t expect anything to come back, it’s just something he does in patients that are as backed up as he was. 
 

Fortunately I live close to Houston and Texas Children’s hospital so I’m sure I could request a referral if his dr local doesn’t want to do a biopsy. I’d like to know for sure because he has a brother.

[trents]

Studies that show the chances of first degree relatives of someone with celiac disease having celiac disease themselves are all over the map. One large recent study done by the Mayo Clinic determined that is is 44% but the most common figure I have seen over the years is 10%. First degree relatives would be siblings and parents. Celiac disease can develop at any stage of life and it can go undetected and undiagnosed for years until damage to body systems is significant enough to warrant serious investigations. Many people with celiac disease have few if any GI symptoms in the beginning stages. Like most health issues, the earlier celiac disease is caught the better the chances are for quick healing and minimal collateral damage. 

[trents]

Oh yes. If your son goes for further testing such as the edoscopy/biopsy he should still be consuming regular amounts of gluten. Many people sabotage the testing by starting a gluten free diet prior to testing. And many physicians don't know enough to tell them not to do that.

[Cari.T]

Thanks for the info. I did read that about continuing a regular diet. My other son has more of what I would consider health issues (though both of them are healthy kids! Still shook about this) so I’d definitely want him to have a panel drawn if his brother is diagnosed. When I brought him in for the constipation I was surprised at how bad it was, they were considering putting him in the hospital. Now this! What a crazy couple of days.

[Cari.T]

Both boys have always had terrible allergy and sinus related symptoms. So now that has me wondering…

[trents]

It is a very good thing that this was discovered at such a young age and it might prove to be a blessing for other family members in the since of being on the lookout for celiac disease. But this will have a major impact socially on all your lives it if is confirmed that your son does have celiac disease.

[Cari.T]

I know. And things could always be worse! But wow, I have a good friend who’s 2 daughters have it so I have a small idea of what it would mean. That dr better call first thing Monday morning to discuss this lol.

[trents]

Living in a large metro area you will likely have resources to help you cope such as celiac support groups. There may even be gluten free eateries available where your family can dine without fear of cross contamination. The hardest part can be getting family and friends onboard in the sense of taking it seriously. Many people take the attitude that gluten free is just the latest fad diet.

[Cari.T]

I can see that being an issue for sure. I called his dad to discuss it and he said he’s fine lol. Okay well medical tests seem to indicate otherwise! I’m trying not to get too far ahead of myself before I have the opportunity lol o speak with his dr tomorrow.

[GodsGal]

Hi Cari. T!

First off, I just want to say that your son is blessed to have a mom like you! I realize that you are probably in shock right now. And you are probably feeling really overwhelmed. I tell people that when I started down this path, it was like I was trying to get a drink of water from a high pressure fire hose! 

I am also glad that you have a friend that is in a similar situation. Having someone in your life that "gets it" is SO helpful! 

There is a huge learning curve ahead of you. There will be good days and bad days. And sometimes you will mess up. (We all do.) So take a deep breath. Take it one day at a time. And be gracious with yourself!

I think that it is important that you and your son's father are both on the same page if you do get the diagnosis. 

you can do this, my friend.

[Cari.T]

Thank you Godsgal! I’ll have his dad come to any dr appointments with us, that way he can get the information from a professional. Hopefully that will get him on the same page.