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

Weird things people have said

dania

By dania
in Coping with Celiac Disease

Recommended Posts

dania Explorer
dania
Posted

I've had people say strange things about celiac to me lately... Like someone said, "Oh I'm just a mild celiac so I don't have to worry about cross-contamination." And then someone else said that they're celiac but things have calmed down now so they can have a bit of gluten here and there.

And I told my doctor that back in 2014 I thought I had been gluten free but I actually wasn't because I had been repeatedly glutening myself with an old colander. And he just looked at me like I was insane, like a colander?? Sure...

I'm not crazy, right? Even if you have no symptoms you have to avoid cross-contamination because you can be doing damage internally right? You can never have 'just a bit'. And a colander is a big source of cross-contamination right?? I know all this but why do these other people not? Why does my doctor not know? So confusing and spreading misinformation... And then they look at me like *I'M* crazy.

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

Celiac.com Sponsor (A8-M):


flowerqueen Community Regular
flowerqueen
Posted

You are right Dania, you cannot have "mild Coeliac disease and you cannot eat "a bit of gluten here and there" if you've been gluten free for a while. Coeliac disease is a lifetime commitment to being gluten free, even if you don't have symptoms, it is still damaging the villi in the gut, which can lead to more serious health problems, (not that Coeliac disease is not serious, because it is). 

Some people may question whether it is safe to use the same colander as those cooking gluten, but it depends how well it is washed up as it is quite easy to miss bits. Personally, I bought a new one and I would definitely not use the same sieve as the mesh is far too tight not to collect  small amounts of gluten. I'm not too surprised at doctors not knowing all they should know about Coeliac disease, it's the same here in the UK where Coeliac UK actually advise doctors on the disease. 

cyclinglady Grand Master
cyclinglady
Posted

FlowerQueen provided excellent advice!  About cross contamination.....I was Glutened last July.  I have no idea what got me.  I am very careful since my hubby has been gluten-free for 15 years and I was diagnosed three years ago.  It was something that hubby did not ingest.  Anyway, six weeks later, my antibodies (as measured by my GI) were higher than when I was diagnosed.  I also had severe symptoms and it took three months to recover and six to regain lost weight.  I also redeveloped old intolerances that took long to resolve.  Worst yet, I developed new things like hives, rashes and itching (not DH).  

Once a celiac -- always a celiac!  

Midwitch Newbie
Midwitch
Posted

Actually I just wonder if some people are just stupid.  No, I don't wonder, thats a lie. 

 

I have noticed though that with my 3 kids who are coeliac, one is extremely sensitive. I had a 98% gluten-free household as the youngest and myself are not coeliac, and he has to keep eating gluten (has the gene so will develop it). Having glutened my daughter twice in the last fortnight, I realised it was dishes sharing a sink and cloth with his bowl that had weetbix in it.  Now we are 100% gluten-free as I simply don't think I can keep her safe with even only one product that is not gluten-free.

 

So sure, some are more sensitive to traces than others, but evenso no coeliac can eat a bit of gluten here or there without doing damage, even if they don't get severe symptoms. 

Newly Diagnosed Apprentice
Newly Diagnosed
Posted

It does seem that doctors do not think about cross contamination.  I guess that's why mine referred me to a nutritionist, who did give me excellent advice about toasters, pots, colanders, etc.  When I went back to my dr for a follow up and said that eating gluten free was "so complicated" he asked why it was complicated and I explained about cross contamination and making sure food is not processed in a shared facility even if the food itself is gluten free.  Maybe I educated him a little, because he agreed with me and didn't act like I was crazy when I explained what I meant.   

Livingnaturally Newbie
Livingnaturally
Posted

Hopefully in the future we will see better education surrounding celiac disease. Many health care professionals don't know a lot about celiac disease. Yes cross contamination is a huge concern. 70% of people with celiac disease get continued exposure on a gluten free diet. You can absolutely get cross contaminated from a colander, and even things like cutting boards and wooden spoons. Anything with scratches in it. You can have something called latent celiac disease meaning they tested positive for celiac anti bodies but they dont have any intestinal damage yet and are monitored to see if they develop the condition. But no one has mild celiac disease. You either have it or you don't. It's extremely important for your long term health to stay away from as much cross contamination as possible.

Napoleo Newbie
Napoleo
Posted
On 7/2/2016 at 10:11 AM, dania said:

I've had people say strange things about celiac to me lately... Like someone said, "Oh I'm just a mild celiac so I don't have to worry about cross-contamination." And then someone else said that they're celiac but things have calmed down now so they can have a bit of gluten here and there.

And I told my doctor that back in 2014 I thought I had been gluten free but I actually wasn't because I had been repeatedly glutening myself with an old colander. And he just looked at me like I was insane, like a colander?? Sure...

I'm not crazy, right? Even if you have no symptoms you have to avoid cross-contamination because you can be doing damage internally right? You can never have 'just a bit'. And a colander is a big source of cross-contamination right?? I know all this but why do these other people not? Why does my doctor not know? So confusing and spreading misinformation... And then they look at me like *I'M* crazy.

They say that because the once you avoid gluten for few days you tend to get normal and fit. And start feeling it's getting mild as the symptoms ease! But that certainly doest mean  you are fine, or you can haven it, as conditions may  change and even having little might bring you back to square on. All depends on your immune sysem how strong it is

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

Celiac.com Sponsor (A8-M):


Archived

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

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


  • Member Statistics

    • Total Members
      131,721
    • Most Online (within 30 mins)
      7,748
    Jessicacat
    Newest Member
    Jessicacat
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rejoicephd
      Draft gluten-free ciders… can they be trusted ?

      By Rejoicephd · Posted

      @Scott Adams That's actually exactly what I ended up asking for— vodka tonic with Titos.  I saw on their website that Tito's is certified gluten-free (maybe many of the clear vodkas are, I don't know, I just happened to look up Tito's in advance). I should have actually specified the 'splash' though, because I think with the amount of tonic she put in there, it did still end up fairly sweet.  Anyway, I think I've almost got this drink order down!
    • Wends
      Inconclusive results

      By Wends · Posted

      Be interesting to see the effects of dairy reintroduction with gluten. As well as milk protein sensitivity in and of itself the casein part particularly has been shown to mimic gluten in about 50% of celiacs. Keep us posted!
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      She has been dairy free for six years, so she’d already been dairy free for two years at her last testing and was dairy free for the entire gluten challenge this year as well (that had positive results). However, now that we’re doing another biopsy in six weeks, we decided to do everything we can to try to “see” the effects, so we decided this past week to add back in dairy temporarily for breakfast (milk and cereal combo like you said).
    • Gigi2025
      How Come Gluten Didnt Bother Me In Italy

      By Gigi2025 · Posted

      Hi Christiana, Many thanks for your response.  Interestingly, I too cannot eat wheat in France without feeling effects (much less than in the US, but won't indulge nonetheless).  I also understand children are screened for celiac in Italy prior to starting their education. Wise idea as it seems my grandson has the beginning symptoms (several celiacs in his dad's family), but parents continue to think he's just being difficult.  Argh.  There's a test I took that diagnosed gluten sensitivity in 2014 via Entero Labs, and am planning on having done again.  Truth be told, I'm hoping it's the bromine/additives/preservatives as I miss breads and pastas terribly when home here in the states!  Be well and here's to our guts healing ❤️
    • Wends
      Inconclusive results

      By Wends · Posted

      Lol that’s so true! Hope you get clarity, it’s tough when there’s doubt. There’s so much known about celiac disease with all the scientific research that’s been done so far yet practically and clinically there’s also so much unknown, still. Out of curiosity what’s her dairy consumption like? Even compared to early years to now? Has that changed? Calcium is dependent in the mechanism of antigen presenting cells in the gut. High calcium foods with gluten grains can initiate inflammation greater.  This is why breakfast cereals and milk combo long term can be a ticking time bomb for genetically susceptible celiacs (not a scientific statement by any means but my current personal opinion based on reasoning at present). Milk and wheat are the top culprits for food sensitivity. Especially in childhood. There are also patient cases of antibodies normalising in celiac children who had milk protein intolerance/ delayed type allergy. Some asymptomatic. There were a couple of cases of suspected celiacs that turned out to have milk protein intolerance that normalised antibodies on a gluten containing diet. Then there were others that only normalised antibodies once gluten and milk was eliminated. Milk kept the antibodies positive. Celiac disease is complicated to say the least.
×
×
  • 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.