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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

    2. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      12

      My only proof

    3. - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - trents replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    5. - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,368
    • Most Online (within 30 mins)
      7,748

    GStrutton
    Newest Member
    GStrutton
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
×
×
  • 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.