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ckd0822

Super Sensitive With Pasta Loving Family

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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.


Cara

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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.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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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!


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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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!!!


Cara

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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.


Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosed by GI with "presumed celiac" based on health history, celiac in family, and resolution of fat malabsorption and many other symptoms on gluten-free diet. Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Negative celiac tests after 15 years gluten-light and then a brief but awful gluten challenge. 

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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.


Cara

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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.

 

http://www.barilla.com/gluten-free-pasta

 

http://tinkyada.com/

 

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.


 

 

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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.


gluten-free since June, 2011

It took 3 !/2 years but my intolerances to corn, soy, and everything else (except gluten) are gone!

Life is good!

 

 

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I agree with Barty.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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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...


Cara

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