Super Sensitive With Pasta Loving Family

[ckd0822]

Hello! I was diagnosed originally when I was 17. Not many choices or options available "way back" then. 4 years later, thanks to insurance changes, I had to switch GIs. New doc told me I did not have celiac disease. 16 years of eating gluten and I now can add neuromuscular symptoms. Rediagnosed last year with biopsy and multiple other costly exams proving I'm perfectly heathy other than the celiac disease.

I am now sensitive to airborne gluten. Obviously large particles, but steam as well. Took two months for the brain fog to register that when I made my family's pasta, it made me sick. Now my daughter cooks any glutenous foods they want.

My problem is that even though, for the most part, my kitchen is gluten-free, I am still having issues. Not as frequently or as severe. I do now realize that I cannot eat or drink anything that is marketed gluten-free as 20ppm is too much for me.

Any suggestions? I'm not Italian, so I don't have a Nona that would beat me for not serving pasta and "gravy", just have a hubs that could eat it 3 times a week.

[RMJ]

Gluten free pasta made by a company with a good reputation?

[ckd0822]

I can't remember the brand. I make sure to use only "dedicated gluten-free facility" products.

[Lisa]

Welcome Cara!  Glad you found us.

 

Determining your level of sensitivity may take a year or more.  Lots of time being totally gluten free, because it takes a varied time to heal to feel what a glutening is.  In the beginning, most foods, gluten or not with bother an unhealed gut.  As you indicated, you have family who prepares their gluten containing foods in your kitchen.  Do they clean up after them selves, do you have a dedicated toaster that's only for you, do they double dip in the condiments in your fridge, are you gluten pasta pots cleaned well?  If flour pasta is made in your kitchen, it's likely that  you will be glutened.  Airborne flour will get into your nasal passages and possibly make you sick, but not too sure about steam exposure.

 

I would revisit your kitchen and it's use.  And hang out here for a while...I learn something every day and I've been at it over ten years.

 

Hope this helps and welcome.

[squirmingitch]

Read the Newbie 101 here:

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

[cyclinglady]

Slightly off topic, but have your kids been tested -- even if they are asymptomatic? Testing should include all first-degree relatives (parents, siblings, kids).

I hope you find your gluten source!

[ckd0822]

Slightly off topic, but have your kids been tested -- even if they are asymptomatic? Testing should include all first-degree relatives (parents, siblings, kids).

I hope you find your gluten source!

Two of the three have been tested with "negative" results, although I was just about laughed at for demanding they be tested. Third one is scheduled for an appointment and will have blood work.

Mother I am almost positive has it but refuses to have the blood work. :/ She is also type 2 diabetic.

Thanks!!!

[greenbeanie]

Have you tried Tinkyada brown rice pasta? I've made lasagne with their noodles for gluten-eaters many times, and no one even knew it was gluten free. Their spirals are also great. The consistency is a little different from wheat pasta, but not too much. Aside from being really yummy, this is the best brand I've found in terms of acceptability to people used to wheat pasta.

[ckd0822]

I am the pasta nerd. I cannot stand any of the commercial long pastas. I have not purchased my new dedicated pasta machine, so I cannot make it myself. Before my re diagnosis, I was making all of our pasta.

[kareng]

There are many pastas that are made in dedicated facilities and tested for gluten.  It depends on the company, but many test at less than 10 ppm.  You might need to ask them.

 

Open Original Shared Link

 

Open Original Shared Link

 

Just a couple.  

 

As a "super sensitive" you will likely need to remove all gluten from your home.  You probably won't buy much of any processed foods. At least that is what i  have seen the Super Sensitives say.

[bartfull]

Ronzoni makes a gluten-free pasta made in a dedicated gluten-free facility in Italy so not only is it gluten-free but also GMO free. I dare anyone to tell the difference between it and gluten pasta. It (IMO) is FAR better than Tinkyada and cost less.

[squirmingitch]

I agree with Barty.

[ckd0822]

I want to say that is the one I have been using. Rondo I Fusilli pasta(sp?). We are selling our home and I plan on making our new kitchen completely gluten-free. My fam can go out to eat gluten!! I am ready to be steady with my symptoms. Preferably none, but...