What is one of the best ways your parents supported you as a kid?

[416510]

Or, what do you wish they did differently? My 3.5yo son may have celiac (His pediatrician has to get the labs checked by a specialist because his iga is 92.5 and she said under 20 is normal and over 200 is celiac? Any thoughts on THAT?) Anyway, I want to be prepared. I have type 1 and I know how beneficial it is to try to be one step ahead of your care team. What resources do you recommend I read up on? What apps, cook books, any tech or other tools would you recommend? Any advice for how we help our toddler into this new normal? PS We live in Germany.

[trents]

Please see my response to your other post.

To that I want to add that until all testing is complete, including an an endoscopy/biopsy, your son should not start reducing gluten intake. Doing so will invalidate testing if you intend to pursue it further for confirmation.

[Scott Adams]

I saw your other post and I think you mean that his tTG-IgA (tissue transglutaminase IgA) blood test for celiac disease was 92.5, but they also do a total IGA test for reference, but I think you mean his tTG-IgA results were high. 

If your son does have celiac disease I think the best support for him would be to fully understand the gluten-free diet, and about hidden gluten in foods, supplements, medications, etc., and teach him about this as well:

 

[416510]

1 hour ago, Scott Adams said:

I saw your other post and I think you mean that his tTG-IgA (tissue transglutaminase IgA) blood test for celiac disease was 92.5, but they also do a total IGA test for reference, but I think you mean his tTG-IgA results were high. 

Yes, that makes sense. The doctor was not talking to me in their mother tongue so it was a bit unclear. Thanks very much for the resource! In your response to my other post you say you would not be keen to get the endoscopy. While I agree that seems unpleasant would it be beneficial to rule out non-celiac gluten sensitivity and simply confirm such a life-altering diagnosis? Thanks again.

[trents]

1 minute ago, 416510 said:

Yes, that makes sense. The doctor was not talking to me in their mother tongue so it was a bit unclear. Thanks very much for the resource! In your response to my other post you say you would not be keen to get the endoscopy. While I agree that seems unpleasant would it be beneficial to rule out non-celiac gluten sensitivity and simply confirm such a life-altering diagnosis? Thanks again.

It would be but with such a strong positive tTG-IGA score at such a young age, there is not much doubt in my mind that he has celaic disease. There are benefits to getting that confirmed as an official diagnosis, however. For one thing, if it's official, doctors can't blow it off as just another "fad" disease. Many in the medical community have "attitudes" about celiac disease. The other potential benefit is that some countries provide stipends of sorts (i.e., the UK) to help offset the expense of buying gluten free foods.

Just a little elaboration on what Scott mentioned about the IGA score. It was not entirely clear which IGA score you were referring to. There is more than one possibility. There is more than one IGA test that can be run for celiac disease so when you just say "IGA" it may not be clear if you are referring to "total IGA" or one component such as the tTG-IGA. We assumed you were referencing the tTG-IGA since you made mention that it wasn't 10x the normal reading. We are familiar with the practice in Europe of declaring a celiac diagnosis without biopsy if the tTG-IGa is 10x normal.

There are also other blood tests for celiac disease that are DGP and IGP based instead of IGA. Here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

When these multiple tests for celiac disease are ordered we call that a "full celiac panel".

[416510]

15 minutes ago, trents said:

The other potential benefit is that some countries provide stipends of sorts (i.e., the UK) to help offset the expense of buying gluten free foods.

Thanks - this well may be similar in Germany and I hadn't thought of that. Although I have started to worry about lunch at daycare.

[Scott Adams]

6 hours ago, 416510 said:

Yes, that makes sense. The doctor was not talking to me in their mother tongue so it was a bit unclear. Thanks very much for the resource! In your response to my other post you say you would not be keen to get the endoscopy. While I agree that seems unpleasant would it be beneficial to rule out non-celiac gluten sensitivity and simply confirm such a life-altering diagnosis? Thanks again.

Children's villi recover very quickly, and over the many years here we've seen plenty of kids get negative biopsy results who had positive blood tests. In the end a gluten-free diet helped with their issues, even though an official diagnosis could not be made. You may want to proceed with the biopsy, but I would still try out a gluten-free diet for a few months, even if the biopsy results are negative. Also, a minimum of 4-6 samples should be taken, and we've see many times on this forum where they only take 1-2.