Multi food allergy study using Xolair/Omalizumab and OIT at Stanford- part 2

 

The gluten free boy has finished with the last of his eight Xolair shots. His current daily “dose” is 2350mg of wheat, rye, barley and oat flour combined.

The protocol written by Dr. Kari Nadeau incorporates rapid oral desensitization along with the drug Xolair. This phase 1 food allergy trial has very specific guidelines regarding daily doses. The dose (wheat, barley, rye and oat) flour must be taken 2 hours before or after exercise or showering. He can not be in excessive heat 2 hours before or after the dose.  He takes the antihistamine Zyrtec an hour before he eats the flours. Each dose (and reaction if one occurs) must be carefully recorded. It is this data which will help to ensure the efficacy of the food trial.

Until last week the flour had to be eaten in its raw un-cooked form. Before then he ate a multitude of wheat infused chocolate puddings or mint chip milkshakes with the flour mixed in. Just recently I have been able to bake the flours into cookies or brownies. The result isn’t exactly the perfect cookie or brownie I am used to baking—I only have approximately ¼ cup of flour to work with—and he has to eat every crumb of what I prepare.

Little things have changed since he passed the cross contamination level dose. I do not obsessively wash the blender or measuring spoons before making his milk shake, my kids are now all able to ‘double dip’ in the same guacamole, gluten free boy fully participates in dish washing, he ate his first Bugle chip and Frango mint (both labels say, ‘may contain wheat.’), and we have eaten in three restaurants without going through the typical ‘allergy drill’. He still cannot eat items made with wheat outside of his dose,  so we continue to ask for the gluten free menu—we do this without interrogating the chef, manager or server. Items fried in the same fryer are safe for him now.

This is a phase 1 clinical food allergy trial and we are very early in the process. Next week we will return to Stanford and hopefully up dose to 4000mg combined of all four allergens. Mini Oreos and Nature Valley granola bars are high on the wish list. To be continued.

photo copy 3                                                        2350mg gluten down hatch!

photo copy 5
wheat, oat, barley and rye chocolate chip cookies!
photo copy 4coveted bag of Pringles, a first time event for the gluten free guy!
IMG 0066 2
daily gluten doses.

3 Responses to Multi food allergy study using Xolair/Omalizumab and OIT at Stanford- part 2

  1. Julie says:

    This is GREAT NEWS!!! I am so excited for him!
    I made it through my first holiday season without any ill effects. I won’t say it wasn’t without some moments of crying and near jumping off the wagon moments. But I didn’t, I have a GREAT support system and everything went well.
    I tried making your brownies, have you made them with regular milk chocolate chips instead of the semi sweet? Do you recommend using a mixer as opposed to mixing by hand? We thought that they were pretty good but are looking to tweak the recipe a bit. Thanks!

    • Linda Levinson says:

      sorry- im a little late in this response! i have not tried milk chocolate chips but they would probably be divine also. and for brownies i always use a wooden spoon to mix–mainly because it is an easy batter and i don’t feel like washing the mixer afterwards! i have a newer brownie recipe which i will post shortly–they are chewed bakery style brownies and one recipe makes a lot!!!!!

  2. Sarah says:

    Hey are you trying to “cure” this or find a relief? Please, I gave you my email address tell me more!

    -Desperate

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