Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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 Do You Explain Celiac To Others?

Walter S

By Walter S
in Coping with Celiac Disease

Recommended Posts

Walter S Explorer
Walter S
Posted

Is there anything out there (a good book or website) that can help me to explain what Celiac is like to live with to my family? They just don't seem to get how tough it can be. If I get tired or weak or need a break thay get very impatient and just don't seem to get it! Thanks in advance for any input!

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

Celiac.com Sponsor (A8-M):


Crystalkd Contributor
Crystalkd
Posted

I'm in search of one of those too! lol Mine laid off a bit when they saw a reaction first hand and realized how quickly I go down hill and how long it akes me to recover. There are other who simi get it but don't understand CC and why my food really needs to be fixed seprately.

Guest micah
Guest micah
Posted

Hi Walter,

Here are a couple of interesting sites that help paint a picture of the seriousness of celiac and hard it is to deal with it.

Open Original Shared Link

Open Original Shared Link

Micah

Teacher1958 Apprentice
Teacher1958
Posted
Is there anything out there (a good book or website) that can help me to explain what Celiac is like to live with to my family? They just don't seem to get how tough it can be. If I get tired or weak or need a break thay get very impatient and just don't seem to get it! Thanks in advance for any input!

I tell people that I have a genetic inability to digest the gluten protein. I also tell them that it's like a severe peanut allergy in that even a tiny amount can set things off. I tell them that because of this, if I eat gluten, I am at a much higher risk for other disorders, some of which may eventually be fatal. Truthfully, I learned over the years with other issues that family members can be some of the most damaging and hurtful people to a person's psychological well being. I don't feel obligated to spend time with them anymore.

kbtoyssni Contributor
kbtoyssni
Posted

I also like the book "Dangerous Grains" if you want to emphasize the seriousness of the disease and all its complications.

Rosewynde Rookie
Rosewynde
Posted

The way I explained how I felt was to ask if they'd ever had a flu bug that drained all their energy. Where if you moved your arm or leg an inch it felt like you just ran a marathon. Most people can relate to that. I also liked how one person described getting glutened as being just like food poisoning.

pellegrino Apprentice
pellegrino
Posted

I too like the book Dangerous Grains and recommended it to my family members. I doubt they've read it yet, since I was just diagnosed, but I hope they do. I also read Celiac Disease: A Hidden Epidemic after I was diagnosed. I would recommend that more for the person WITH celiac.

I think Dangerous Grains would be better for family members to read, because I think the way they explain things would be easier for others to understand. The authors also talk a lot about non celiac gluten sensitivity, which they believe is far more common than celiac disease, and is also often overlooked.

Even if your family members are tested and don't have celiac, Dangerous Grains might make them think twice about eating gluten, and about whether or not they have a sensitivity to gluten, even if they don't have celiac disease. And of course it will help them understand what you're going through, and the diseases you're more susceptible to as a result of having celiac disease.

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
      127,413
    • Most Online (within 30 mins)
      7,748
    Leslie Smith
    Newest Member
    Leslie Smith
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Waiting on Blood test results…

      By Scott Adams · Posted

      It looks like they will now order the Tissue Transglutaminase IgA Antibody test, but verify this with your doctor.
    • trents
      Reaction to gluten or gastro bug?

      By trents · Posted

      I think you know enough to conclude that your son either has celiac disease or NCGS (Non Celiac Gluten Sensitivity). As soon as you removed gluten from his diet his stools firmed up. It is also very common for celiacs to be intolerant of dairy and soy, so that is another piece of corroborating evidence. If I were you, I would consider getting your sone genetically tested for the genes we know are associated with celiac disease. There are two main genes looked for, HLADQ2 and HLADQ8. Having either or both provides the potential for developing celiac disease. But since about 40% of the general population have one or both of the genes it cannot be used to diagnose celiac disease. But it can be used as a rule out measure if both are absent, thus pointing one in the direction of NCGS. If one or both are present, there is the possibility of either celiac or NCGS. NCGS is 10x more common than celiac disease by the way. The two conditions share many common symptoms. The difference being that NCGS does not damage the lining of the small bowel as does celiac disease. Celiac disease is actually an autoimmune disorder. At any rate, both conditions require a gluten free diet so, at the end of the day, that is the antidote for both. Some experts feel that NCGS can be a precursor to the development of celiac disease.  I would also make mention of the fact that once gluten is removed from the diet and then added back in for the gluten challenge, reactions are often more violent as all tolerance has been lost.
    • cristiana
      Reaction to gluten or gastro bug?

      By cristiana · Posted

      Hello @Beck1430 and welcome to the Forum. I am sorry your little boy is going through this. Your question is an interesting one.  I would say the majority of posts I have read since joining this forum speak of a fairly quick reaction, and that has been my own experience.  The only major gluten hit I've had in more recent times resulted in chills, dizziness and vomiting about 2-3 hours after eating gluten.  It was truly horrible.  The fact that I vomited was new for me - I didn't get diarrhea which had been my classic reaction in the past.  It was as if in going totally gluten free my body has decided to react more violently to gluten, and quite differently.  Reactions can change over time - the fact that your son is reacting differently doesn't necessarily mean that gluten isn't the culprit. Anyway,  this study is interesting in that it states that it is possible to react 12 hours later. https://www.schaer.com/en-us/a/how-long-after-eating-gluten-do-symptoms-start#:~:text=A survey published in Alimentary,by 12 hours or more. I am afraid the only way you will probably know for sure is to repeat the challenge again, but I can completely understand your reluctance to do that.  I wonder if I can ask a couple of questions: Regarding the rash - has that also subsided since giving up gluten?   There are quite a lot of photos of dermatitis herpetiformis to see online, I wonder if you think what your son had/has was similar? Also, do you have coeliac disease in the family?  It is inherited and if you have others in the family, that could point more strongly to your son having coeliac disease. Cristiana
    • Beck1430
      Reaction to gluten or gastro bug?

      By Beck1430 · Posted

      Hi there, I'm looking for some advice for my 2 year old. After he turned one he started eating more foods like pasta and breadsticks and our supermarket finally started to stock a soy free bread (he has an intolerance to dairy and soy) so he started eating bread for the first time.  He began having foul, loose nappies, which I assumed must be teething, but this went on and on for a couple of months. Coupled with that, he started having patches of red scaly skin, a little bit like eczema but more widespread. He was also very tired and quite miserable. Given that it all coincided with him starting to eat a lot more gluten, his dietician recommended I eliminate gluten to see what happened. His poos immediately changed back to normal and were finally formed, and he’s been off gluten since last summer.   Fast forward 6 months and we did a wheat challenge yesterday, giving him a small breadstick at about 11am. He seemed ok through the day but 11pm he woke up vomiting, and was sick 3 more times over the course of 90 minutes and was writhing in pain on the floor crying about “poo” which never came, and today he has done a normal poo.  My two questions are: Is it possible that this was a reaction to the gluten if it came 12 hours after ingestion? Or is that too long to cause vomiting? I wonder if it’s more likely an unrelated bug but can’t work out where from as we’ve had a quiet week. Would there not be loose stools too if it was a reaction to gluten? Before going gluten-free, this was his main symptom!   If it could be the gluten that caused this, where do we stand with ever testing for coeliac? Now that I know more about the testing I don’t know why his dietician didn’t recommend we do that before removing it from his diet before. Seems cruel to make him ill for the sake of a test. Grateful for any pointers or advice. Thank you!   
    • ChrisSeth
      Waiting on Blood test results…

      By ChrisSeth · Posted

      Okay thanks Scott. So based on my results will they order more tests to be done? Kind of confused.
×
×
  • Create New...