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.

  • 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. - Scatterbrain replied to Scatterbrain's topic in Sports and Fitness
      3

      Feel like I’m starting over

    2. - Kirita replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Recovery from gluten challenge

    3. - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Recovery from gluten challenge

    4. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Brain fog

    5. - trents replied to Scatterbrain's topic in Sports and Fitness
      3

      Feel like I’m starting over


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,287
    • Most Online (within 30 mins)
      7,748

    Desert Ratt
    Newest Member
    Desert Ratt
    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

    • Scatterbrain
      Thanks to those who have replied.  To Cristina, my symptoms are as follows: Dizziness, lightheaded, headaches (mostly sinus), jaw/neck pain, severe tinnitus, joint stiffness, fatigue, irregular heart rate, post exercise muscle fatigue and soreness, brain fog, insomnia.  Generally feeling unwell. To Trents, We didn’t do any of the construction but did visit the job site quite often.  While getting the old house ready we stirred up a lot of dust and I’m sure mold but haven’t been back there for over a month.
    • Kirita
      Thank you so much for your response! I have a follow-up appointment with her pediatrician next week, and also an appointment with her pediatric GI Dr. Your message gives me some ideas for questions to ask the doctors. My daughter went strictly gluten-free in January following her first endoscopy so I’m guessing her diet is pretty solid. She is compliant but also reliant on others to make her food (at school and home) but she didn’t have this problem prior to the gluten challenge when she went strictly gluten-free. It really makes sense to me that the gluten challenge inflammation hasn’t healed and I will be asking her doctors about nutritional issues. I ask for anecdotal stories because the research surrounding the gluten challenge seems to be inconsistent and inconclusive (at least what I’ve been able to find!). Thank you so much for your response!
    • Scott Adams
      While the positive endoscopy confirms the diagnosis, it's important to be skeptical of the idea that your daughter will simply "bounce back" to a pre-challenge state. The gluten challenge was essentially a controlled, prolonged exposure that likely caused significant inflammation and damage to her system; it's not surprising that recovery is slow and that a subsequent exposure hit her so hard. The persistent fatigue is a major red flag that her body is still struggling, potentially indicating that the initial damage hasn't fully healed or that her system is now in a heightened state of reactivity. Rather than seeking anecdotal timelines from others, her experience underscores the critical need for close follow-up with her gastroenterologist to rule out other nutrient deficiencies commonly caused by celiac flare-ups, like iron or B12, and to consult with a dietitian to scrutinize her diet for any hidden sources of cross-contamination that could be perpetuating her symptoms. The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs.      
    • Scott Adams
      The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Brain fog, like other celiac disease symptoms, does improve after you to 100% gluten-free, and supplementation will also help.      
    • trents
      Were you doing any of the new home construction yourself? Drywall compounds and adhesives used in construction have been known to cause problems for some celiacs.
×
×
  • 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.