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CeliacMommaX2

Am I over reacting? Does this plan sound good?

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I posted last month about not knowing what to do about my 6 year old daughter's elevated TTG... "Elevated TTG after 2 years of gluten free diet in 6 year old"   (TTG  over the 2 years:  69 -> 73 -> 81 -> 41 -> 64)

We saw our GI doc and she was not concerned and just said we'd check her labs in another 6 months and to not change anything since she was continuing on her growth curve.  

Someone on that post mentioned Fasano and we started to look into him.  We are now planning to :

1)  start the Fasano diet with our whole family (our 5 year old also has celiac but with normal labs and our other children are ages 3 and 1)

2)  drive out to Boston to see Dr. Fasano in August (which will not be easy with 4 young children and maintaining the Fasano diet)

Am I over reacting with this plan?  


Mom to 2 young kids with celiac, diagnosed March 2015

*Gluten free household

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I would probably try using the diet first for 2-6 months, Then get the numbers checked again before planning to go on a huge road trip and go see someone like that to be 100% you need to.  If I read this right her numbers have been constantly high over the last 2 years? Perhaps she is reacting to another grain? Some celiacs react to other grains proteins like oats, rice etc. I think it was like 10% of celiacs react to even gluten-free Oats no matter what.  So try the Fasano Diet remove all grains and see how it goes might get lucky.  If no improvements on the diet then perhaps plan your trip.


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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We've been completely oat free for a year now.  We've eliminated quinoa and decided we are going to go for the Fasano diet, but only for her (which I know will be tough to see her little brother and sisters getting foods she can't have).  I don't think I can make things from scratch for a family of 6.  We plan to make a vacation of the road trip to see Dr. Fasano and see Boston.  We figured we can have him see our son too while we're there anyway.  


Mom to 2 young kids with celiac, diagnosed March 2015

*Gluten free household

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