Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Super Sensitive With Pasta Loving Family


ckd0822

Recommended Posts

ckd0822 Newbie

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



RMJ Mentor

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

ckd0822 Newbie

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

Lisa Mentor

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 Veteran
cyclinglady Grand Master

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 Newbie

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!!!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



greenbeanie Enthusiast

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 Newbie

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 Grand Master

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 Rising Star

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 Veteran

I agree with Barty.

ckd0822 Newbie

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...

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,917
    • Most Online (within 30 mins)
      7,748

    tiffanygosci
    Newest Member
    tiffanygosci
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • tiffanygosci
      Hi! I had my first episode of AFib last May when I was 30 (I have had some heart stuff my whole life but nothing this extreme). I was not diagnosed with celiac until the beginning of this month in October of 2025. I was in the early stages of celiac, so I'm not sure if they were related (maybe!) All of my heart tests came back normal except for my electrolytes (potassium and magnesium) that were low when the AFib occurred. I also became pregnant with our third and last baby a couple weeks after I came back from that hospital stay. I had no heart complications after that whole thing. And I still haven't over a year later. It was definitely scary and I hope it doesn't happen again. I drink an electrolyte drink mix about every day, and I'm sure being on a gluten-free diet will help my body even more! I will pray for you in this. Taking care of our bodies is so challenging but Jesus is with us every step of the way. He cares and He sees you!
    • knitty kitty
      I followed the Autoimmune Protocol Diet which is really strict for a while, but later other foods can be added back into your diet.  Following the AIP diet strictly allows you digestive system to heal and the inflammation to calm down.  Sort of like feeding a sick baby easy to digest food instead of spicy pizza.   It's important to get the inflammation down because chronic inflammation leads to other health problems.  Histamine is released as part of the autoimmune response to gluten.  High histamine levels make you feel bad and can cause breathing problems (worsening asthma), cardiovascular problems (tachycardia), and other autoimmune diseases (Hashimoto's thyroiditis, diabetes) and even mental health problems. Following the low histamine version of the AIP diet allows the body to clear the histamine from our bodies.  Some foods are high in histamine.  Avoiding these makes it easier for our bodies to clear the histamine released after a gluten exposure.   Vitamin D helps regulate the immune system and calm it down.  Vitamin D is frequently low in Celiacs.  The B Complex vitamins and Vitamin C are needed to clear histamine.   Supplementing with essential vitamins and minerals boosts your intestines' ability to absorb them while healing.   Keep in mind that gluten-free facsimile foods, like gluten-free bread, are not enriched with added vitamins like their gluten containing counterparts are.   They are empty calories, no nutritional value, which use up your B vitamins in order to turn the calories into fuel for the body to function.   Talk to your doctor or nutritionist about supplementing while healing.  Take a good B Complex and extra Thiamine in the form Benfotiamine (shown to promote gut health).  Most B Complex vitamins contain thiamine mononitrate which the body cannot utilize.  Meats and liver are good sources of B vitamins.   Dr. Sarah Ballantyne wrote the book, the Paleo Approach.  She's a Celiac herself.  Her book explains a lot.   I'm so glad you're feeling better and finding your balance!
    • klmgarland
      So I should not eat my gluten free bread?  I will try the vitamins.  Thank you all so very much for your ideas and understanding.  I'm feeling better today and have gathered back my composure!
    • knitty kitty
      Some people prefer eating gluten before bed, then sleeping through the worst symptoms at night.  You might want to try that and see if that makes any difference.   Several slices of toast for breakfast sounds okay.  Just try to work up to the Ten grams of gluten.  Cookies might only have a half of a gram of gluten.  The weight of the whole cookie is not the same as the amount of gluten in it.  So do try to eat bread things with big bubbles, like cinnamon rolls.   Yeah, I'm familiar with the "death warmed over" feeling.  I hope you get the genetic test results quickly.  I despise how we have to make ourselves sick to get a diagnosis.  Hang in there, sweetie, the tribe is supporting you.  
    • Clear2me
      Thank you, a little expensive but glad to have this source. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.