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

By ckd0822
in Super Sensitive People

Recommended Posts

ckd0822 Newbie
ckd0822
Posted

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
RMJ
Posted

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

ckd0822 Newbie
ckd0822
Posted
  • Author

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

Lisa Mentor
Lisa
Posted

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
squirmingitch
Posted

Read the Newbie 101 here:

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

cyclinglady Grand Master
cyclinglady
Posted

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
ckd0822
Posted
  • Author

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
greenbeanie
Posted

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
ckd0822
Posted
  • Author

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
kareng
Posted

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
bartfull
Posted

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
squirmingitch
Posted

I agree with Barty.

ckd0822 Newbie
ckd0822
Posted
  • Author

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.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,983
    • Most Online (within 30 mins)
      7,748
    CRae
    Newest Member
    CRae
    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

    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      @Riley., Welcome to the forum.   It was once believed that Celiac Disease was only a childhood disease and it can be outgrown.  That was before 1951, before gluten was discovered to be cause of Celiac Disease, also called Infantilism.  Back then Cileac Disease was thought to be only a gastro intestinal disease, once you  "outgrew" the colicky phase, you were cured. You were so lucky to be diagnosed at 5 years old so your developing years were normal.  Gluten can affect multiple systems.  The nervous system, your intellegence. The muscules, skeleton. It can cause neurological issues like brain fog, anxiety, and peripheral neuropathy.  It can cause joint pain, muscle weakness, and skin rashes. Epilepsy is 1.8 times more prevalent in patients with celiac disease, compared to the general population. Because through malabsorption and food avoidances, it causes vitamin D and numerouus other essential nutrient deficiencies, it allows allergies, infections, poor growth, stuffy sinuses and eustacian tubes. There is even a catagory of celiac disease called "Silent Celiac".  Any symptoms are explained away as this, that or the other thing. Gluten is one of the most addictive substances we consume.  Activating the Opiod receptors in our cells, it can numb us to the damage that it, and other foods are causing.  It has become socially acceptable to eat foods that make us feel sick.  "There's a pill for that".   It is generally accepted that n fact you are weird if you don't. The hardest part is that if you don't eat gluten you will feel great and think why not.  But slowly it will effect you, you'll be diagnosed with real diseases that you don't have. You'll be more susseptable to other autoimmune diseases.  As you read through the posts here, notice how many are finally dianosed, after years of suffering at older ages.  Is it worth it? I think not. Perhaps this book will help:  Here is a list of possible symptoms:   
    • Riley.
      Outgrow celiac?

      By Riley. · Posted

      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Aldi Pueblo Lindo Yellow Corn Tortillas

      By tiffanygosci · Posted

      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
×
×
  • 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.