Testing Options For Children

[CanadianK]

Hi There

 

I'm in the middle of testing for myself, but notice a lot of my symptoms in one of my children. 

 

For many reasons, I am not comfortable doing the blood test on my daughter. She's 6 and extremely afraid of the idea of a blood test. She's extremely sensitive and it took until she was 4 to even allow the dr to touch her tummy (at her yearly check up) and it was at that appt that she finally felt brave enough to stand on the scale… she's just so sensitive/unsure/afraid/ etc.  I've had to have other medical procedures done to her that required me to hold her down while she kicked and screamed and I just feel like I can't do this to her again in order to get a blood test done. The loss of power she feels when this happens is very disturbing to me and I don't want her to start to feel that a loss of power over her body is normal and acceptable… I thought perhaps the numbing pads (lidocane) on her arms before the blood test would help but she won't even use bandaids because the taking off of the bandaid is very scary to her so the pads would not be an option. 

 

SO -- what are my options for celiac/gluten allergy testing? Are there any or do I just need to wait until she's older and can truly understand the blood test? 

 

Is there a saliva panel that's reliable? Scratch tests (although I'm not sure she'd do that) Even the saliva may need to be gathered in her sleep! lol! 

 

After reading all about the SCD diet I'm also wondering if all her social sensitivities may be gluten/diet related… 

 

Thanks!

 

 

 

[appletree729]

I can relate - my 7 year old (who I posted about in the other thread that you responded to!) has very, very high anxiety like you describe - maybe not quite as severe, but what you described rang a bell for me...

 

I'm pretty sure that if you want a definitive diagnosis, you will need to at least get bloodwork done at some point.  Has she been to a GI doctor?  If there is enough symptomatic evidence, they may want to do an endoscopy and then you can do the blood draw after she is sedated.  This is what they were going to do for my son, not because he had anxiety issues, only because it was easier and it seemed the sort of routine way they did it. But this is only because there was enough evidence form his symptoms for them to be thinking celiac (or something else that could be diagnosed via endoscopy) in the first place.

 

If you go that route, of course you will want to ask what sort of sedation will be required - IV sedation obviously wouldn't help her any as far as the anxiety is concerned!  But when my youngest daughter needed an endoscopy, they used a small mask with gas and I was able to stay with her until she fell asleep.  So no needles while she was awake.

 

Anyway, if that is not something you want to do, my only other suggestion would be to help her cope with the anxiety (which you should be doing anyway, and I'm sure you are!).  She's going to have to get bloodwork done at some point. And she needs to learn coping mechanisms for her anxiety, and she needs to practice them with role play situations, and also in real life.  Sometimes we need to hold our child's arms or legs still to protect them during a procedure that they need - something that is best for them.  They are children and are not always capable of understanding the *why* right then and there.  And that's okay.  As the parent, we just need to remain calm and explain to them that we will take care of them and that they are safe and loved, and to hug them tight after it's over!

 

One thing that has helped us is something called "Buzzy", suggested by an adult friend who herself had a very severe fear of needles - here is a link:  Open Original Shared Link  It's not magic but it does help my daughter.

 

Hope you get things sorted soon!!

 

 

[appletree729]

One other thing that I want to mention - you said something about waiting until they are older for the blood test.  According to our doctor, it is very important to NOT wait with a child.  She is one of the more prominent docs as far as pediatric celiac disease is concerned, and says that if a child is diagnosed after they turn 10 years of age, their chance of acquiring a different auto-immune disease later in life is dramatically increased - I think like a 25% increase.

 

So it's very important to have testing done early (and often if they are in a high risk group - a sibling or parent with celiac, as an example…  because people can develop celiac disease even after negative testing)

 

Here is a video where she talks about it.  There is another one somewhere that talks about the specific tests needed and diagnosis information.  

 

One more thing to note - if you decide to try to get bloodwork done, it will be very important for you especially to MAKE SURE that you request the exact tests, and all of them, that are needed, or might be needed.  This is one thing that I'm unfortunately dealing with right now with my own daughter.  

 

You don't want to have to go through all of that only to realize that she is low in IgA, and now needs to go get a whole new round of tests done.  Your doctor likely will not know which tests need to be run (they often just check off "celiac panel" and are done with it - this is not enough if you want the most comprehensive testing and want to avoid needing to go back for more blood work!!!!

 

[StephanieL]

If you are dx, many Dr's will accept a kid with symptoms and positive blood work and maybe genetics for a dx. You won't get one with NO testing most likely.  You may be able to get away with no biopsy depending on how your testing works out.

 

I would suggest if you are near a large Childrens Hospital, calling the Child Life people to manage the blood work.  They are good at that kind of thing.  I have heard good things about Buzzy too.

 

Good luck