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

Biggest Challenge of Celiac


gravesl

Recommended Posts

gravesl Newbie

Hey guys! I’m a graphic design junior, and we are in the first semester of our capstone. My mom was diagnosed with celiac, so I’m really passionate about helping make the post diagnosis life a little easier. I’m not sure what specific problem within celiac disease to tackle. I have found it helpful to talk to those with celiac about what they find most frustrating or challenging. If anyone has any suggestions on what is most frustrating or what you wished you had to help, it would be much much appreciated!


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



Celiac.com Sponsor (A8-M):



RMJ Mentor

Having supportive family makes celiac much easier - so you caring so much is wonderful!

Jmg Mentor
 

 If anyone has any suggestions on what is most frustrating or what you wished you had to help, it would be much much appreciated!

 

Here's a few ideas (thanks for asking).

1. Ignorance amongst the wider population about the seriousness of Coeliac. It can get dismissed as fad diet, first world problems etc. In reality it's an auto immune disease with very serious potential symptoms up to lymphoma and early death.

2. Dangers of cross contamination. 'Don't be silly. It's only one crumb. A little gluten can't hurt can it?' It's based on an immune system reaction, so yes, the tiniest crumb can make you really ill. If more people understood that they would also understand why people get so paranoid about eating out / at friends etc.  

3. Don't take it personally - when I don't eat the 'gluten-free' cake/salad/whatever that I'm offered. I'm not being rude, I'm being cautious through prior experience. Don't be offended and do take no for an answer.  

3.  This is perhaps more personal. I don't want to be defined by this disease. Sometimes I don't want to talk about it, don't want that conversation about how your sisters auntie can't eat bread. We have certain dietary requirements which we HAVE to adhere to, but otherwise we're just like everyone else. So I don't want to be in a 'celiac/fussy eater/paranoid hypochondriac box' :P

Now how to encapsulate all that in a simple graphic? Haven't the foggiest idea! Good luck and I hope you post the final image here when it's done. 

 

 

Newly Diagnosed Apprentice

Hi, I was diagnosed in December.  Prior to diagnosis I had no symptoms except heartburn and the heartburn hasn't completely gone away yet so I am thinking the heartburn may not even be related to celiac.  For me the most frustrating thing is that it seems sometimes that my entire life has changed and I wasn't even feeling sick before diagnosis (I know, that should be a good thing, except it was such a huge shock to find out that I was actually sick even though I felt really good).  It can be hard to stick to the diet (I have been, but it's hard) when I have no "consequences" if I don't stick to it.  I know, not exactly true, even though I may not feel sick I have intestinal damage and lots of risks if I don't stick to gluten-free.  Going to events like birthday parties can be difficult.  Even going to the grocery store can be difficult if I am not in the right frame of mind.  I try to think positively about all the good foods that I can still eat and all the really good alternatives there are in gluten free foods.  But sometimes I still get depressed about it.  I think that as time goes by this will happen less.  I would imagine many newly diagnosed people feel this way and go up and down in their moods.  It is nice that you want to help your mom adjust.  Having supportive family has definitely made things easier for me. 

  • 3 weeks later...
gravesl Newbie

Thank you so much for all your help! This will make a big difference in my project :)

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,606
    • Most Online (within 30 mins)
      7,748

    LWceliac38
    Newest Member
    LWceliac38
    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

    • Scott Adams
      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • 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.
×
×
  • 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.