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

How Careful Do I Need To Be?


cavetroll

Recommended Posts

cavetroll Newbie

Hello,

I have recently had diagnosis of coeliac confirmed by blood test and endoscopy/biopsy but have yet to see a consultant or dietician or have anything explained to me properly. I saw my GP but she just said to look online for help. This forum is great but I'm still pretty confused. I only got tested as I was looking for something that might help with my psoriasis and did not have many GI symptoms, so I am struggling to know how careful I need to be.

I have obviously cut out all gluten, am reading labels etc, but is it ok to eat something that "may contain traces"? And do I need to use separate pans, spreads etc than the rest of my family? Ive read lots of posts but everyone else seems to get sick from CC whereas I'm not sure if I would notice? But it could still be doing damage. I appreciate how lucky I am not to have been as ill as some of you and to not get gut symptoms from CC, but I am aware that I could be doing hidden damage. Any advice would be much appreciated.

I only know one other coeliac and his philosophy seems to be eat gluten free most of the time and have the occasional binge on pizza and beer. :unsure: doesnt seem like a good plan to me, but has meant that all our mutual friends think I'm making too big a deal over my diagnosis and being strict about the diet and I should just be like him!

Had my daughter tested this week, awaiting results...

Thanks for reading. x


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



Celiac.com Sponsor (A8-M):



captaincrab55 Collaborator

cavetroll, Your Celiac friend lacks common sense if he eats & drinks gluten every now and then... Read my lips. "No Gluten in your diet"..................

cavetroll Newbie

cavetroll, Your Celiac friend lacks common sense if he eats & drinks gluten every now and then... Read my lips. "No Gluten in your diet"..................

yeah, thats what i thought, unfortunately a lot of my friends are used to his "leisurely" approach and think i'm the one being over-cautious..

mushroom Proficient

yeah, thats what i thought, unfortunately a lot of my friends are used to his "leisurely" approach and think i'm the one being over-cautious..

Yes, unfortunately we all run into this. The ones who cheat tell the world that we don't have to eat this way, that it is a choice, otherwise we wouldn't be able to cheat. I don't know how much your friend suffers from his cheating, but he deserves to suffer a lot for all the grief he causes the rest of us.

ciamarie Rookie

If you were diagnosed with blood test and biopsy, that would mean the biopsy shows intestinal damage. That means even a crumb out of a jar of mayonaise (or peanut butter or whatever...) would be enough to make your body have a reaction, causing damage, even if you don't notice it. I don't share jars, etc. with anyone as I live by myself, but if other family members are careful not to 'double-dip' or other techniques others may share, it may be possible to not have to get separate condiments.

But generally, the answer is you do have to be very careful.

Bubba's Mom Enthusiast

You must make sure you ingest NO gluten..not even a trace! Even though you may not feel digestive issues, damage is being done if you eat it. The inflammation in your system can make you develope all sorts of other symptoms later too, maybe even develope other autoimmune diseases or cancer.

It's nothing to play with.

It's a shame your friend is so foolish. Who knows what damage is being done?

Stand up for yourself. You are your own advocate. Don't ever let someone bully you into trying "just a bit".

With Celiac disease it's absolutely vital that you remain 100% gluten-free.

GFinDC Veteran

Hi Cavetroll,

You wouldn't happen to be a WOW player would you?

To your question, yes a little bit can hurt you. The thing is, celiac is an autoimmune disease. That means your bodies immune defense system turns against itself. Your own body attacks itself. Fun huh? And the immune system is very sensitive, it has to be or those little bitty microscopic germs in the environment would take over and kill us. Like a million little trolls attacking all at once. Urgh, argh! :D

There are some people who have silent celiac, where they don't experience any GI symptoms. I don't know if they are better off or not. It seems it might be harder to stick to the diet if you don't have pain or other symptoms that you can detect. Some people have no GI symptoms but get sore joints, sore muscles, thryoid problems, skin conditions, insomnia, fever, or brain damage even. There is a huge list of symptoms that can result from celiac disease besides GI distress. Sometimes people don't think they have symptoms but when they try gluten-free they find they feel better than they have for years. And things that they thought had nothing to do with what they ate resolve.

Your friend is being very foolish and will pay the price in time. How long they can get away with cheating is unknown, but they will not get away with it forever.


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



Celiac.com Sponsor (A8-M):



cavetroll Newbie

Hi Cavetroll,

You wouldn't happen to be a WOW player would you?

Haha, no, but I am a WOW widow!

Thanks for all the advice, going to have a good sort out of the kitchen now. One of the reasons for being tested in the first place was in the hope of calming my psoriasis down, but hasn't had much effect yet, but that could be because I haven't been careful to avoid CC up til now. I guess this is quite a learning curve. First appointment with consultant tomorrow so hoping for a bit more info, and glad to report that my daughters blood tests have all come back normal :) .

IrishHeart Veteran

Haha, no, but I am a WOW widow!

Thanks for all the advice, going to have a good sort out of the kitchen now. One of the reasons for being tested in the first place was in the hope of calming my psoriasis down, but hasn't had much effect yet, but that could be because I haven't been careful to avoid CC up til now. I guess this is quite a learning curve. First appointment with consultant tomorrow so hoping for a bit more info, and glad to report that my daughters blood tests have all come back normal :) .

Here are some helpful tips on avoiding CC:

Open Original Shared Link

Best wishes--and NO GLUTEN FOR YOU, Not even a teensy bit ;)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,585
    • Most Online (within 30 mins)
      7,748

    Josephine Minaudo
    Newest Member
    Josephine Minaudo
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)

    • There are no registered users currently online

  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
×
×
  • 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.