Stricter Protcol Than Just gluten-free?

[juliev 1]

Hi,

 

My 10-year-old is presumed Celiac based on 4 blood draws (first three test results 18 months ago were over 100; most recent test was 96).  Although we thought we'd been very careful to keep him gluten free, his most recent test result should have been much lower if we had.  I've heard that there is a stricter protocol for someone who is not responding to a gluten-free diet, but I don't know what that stricter protocol is.  My guess is that it involves a gluten-free, casein-free diet.  Is anyone familiar with this, and if so, would you be willing to share information with me?

 

Thanks so much.

[ravenwoodglass 1,414]

Welcome to the board. Are you following all the stuff we have to do to avoid cross contamination? He needs his own toaster, condiments, you can't use stuff like a colander that is used to drain wheat pasta for his gluten-free pasta, supplements and script meds need to be checked to be sure they are gluten free etc. It isn't just that food must be gluten free we also have to be very careful about how it is prepared.

Have you read the Newbie thread at the top of the Coping section? If not you should as it will have a lot of valuable info for you.

I don't have time before work for a more complete answer but I am sure others will be on to give some good recommendations.

[cyclinglady 1,597]

This is an older post from Jebby. She is a Ped Medical doctor who also has celiac disease. She wrote about Dr. Fansano's diet (and other celiac disease experts) and how it deals with super sensitive or possible refractory celiac disease.

https://www.celiac.com/gluten-free/blog/1038/entry-1780-the-gluten-contamination-elimination-diet-summary-of-dr-fasanos-recent-paper/

I hope this helps!

[kareng 2,317]

https://www.celiac.com/gluten-free/blog/1038/entry-1780-the-gluten-contamination-elimination-diet-summary-of-dr-fasanos-recent-paper/

 

 

Sometimes referred to as "the Fasano Diet"

 

 

Looks like Cycles & I were posting at the same time!  

[cyclinglady 1,597]

https://www.celiac.com/gluten-free/blog/1038/entry-1780-the-gluten-contamination-elimination-diet-summary-of-dr-fasanos-recent-paper/

 

 

Sometimes referred to as "the Fasano Diet"

 

 

Looks like Cycles & I were posting at the same time!  

I was going to say two things:

"Great minds think alike!"

And....

When I first saw the posting, I was heading out the door and in a hurry and thought that Karen will respond. I was right!

[kareng 2,317]

Newbie thread

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

[RMJ 125]

And just in case you want to see the original Fasano paper describing the diet:

http://www.biomedcentral.com/content/pdf/1471-230X-13-40.pdf

[juliev 1]

Thank you, all!  This was just the information I was hoping to find.  While we knew to get him his own oven (just so happens that we're moving into a brand-new house in a few weeks, so problem solved there!), no one said anything about new colander (though I had wondered about that) or other items. 

 

I will definitely look into the Fasano diet! 

 

Eloise, best wishes in your new journey!  I'm sure that changing your eating habits as a teen is incredibly difficult, but good for you for taking control of your health.  I really appreciate your recommendation to check his vitamins for gluten, too!  Great suggestion.

 

Thank you all again!  I feel very encouraged that we'll be able to better eliminate gluten and to help him feel his best.