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

Familt Act Like Celiac Is No Big Deal?


erin24

Recommended Posts

erin24 Explorer

Maybe I am jumping the gun b/c my blood test results are not back yet but...

Anyone have friends and family that act like Celiac is no big deal. "Ohh, the diet won't be that bad...I know someone with it and he/she will eat stuff every once in a while, you just can't eat bread". I guess I am not taking this lightly and I am kind of discouraged by my family telling me these things. They think gluten is only in bread adn do not realize that it is in practically everything. I want them to support me in having a 100% gluten free diet (if I have it) and not make it difficult by not accomodating/understanding my situation.

Anyone feel this way or am I just being overly sensitive?


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



Celiac.com Sponsor (A8-M):



penguin Community Regular

My mom was supportive for the most part. We were in the same part of the country and she went shopping at Wild Oats with me. When I was being tested, she said, "but I read that you can get cancer and all of these other horrible things, you can't have that. Besides, it's genetic blah blah." And then she remembered my dad was adopted and we don't have a clue about his family :rolleyes: My mom knew about the pain and anemia, but she didn't know until I was being tested that I had D every day. Now she asks me about my poop a lot, which is the exact reason I didn't tell her when it started. <_<

Recently she told me I was diagnosing myself, even though I just had an official dx

She kind of goes back and forth from "are you sure about this" to "well, maybe that's what's making you sick." I don't think she can wrap her brain around the fact that my dietary restrictions are permanant.

It's hard on the family too, since it impacts them as well. Holidays, birthdays, family dinners, etc. I think in time my family will come around, right now it just seems like this nutjob thing. Hopefully your family comes around, especially if you get glutened around them.

I know I get sicker from gluten than I did just a month ago.

Good luck! :)

wolfie Enthusiast

I don't think you are being too sensitive at all. This is nothing to take lightly and is more complicated than your family understands. If you do test positive, maybe give them some material to read or educate them on foods you can and can't have.

My Mom/Dad are super supportive, as is DH. My sister, on the other hand, wasn't at first and is still a little hesitant. She says things like "you can just pick the croutons out of your salad" and others along that line.

Hang in there! You are doing the right thing.

Kim

Guest Robbin

I've been struggling with the same issues with my family--mom is supportive, husband is supportive, sons and sibs are not. Even one of my closest friends who is a nurse is skeptical about it. I am getting very, very sensitive to gluten since going gluten-free as well. My friend said the other day that there is no way just touching it or using it in shampoos can cause a reaction. (I had told her my old shampoo caused sores in my scalp, itching and hairloss). This is from a life-long friend. I guess I just make this stuff up so I can pay a fortune for foods, cosmetics and skin care products, not to mention the fact that diarrhea and rashes are magically gone! I'm glad this forum is here because I think I'd start to go nuts....Hang in there, all you can do is take care of yourself and maybe when they see such a difference in your health and energy, they will come around. I'm hoping for that for myself too! :unsure:

tarnalberry Community Regular

Perhaps you can get them to take it seriously *and* not have it be a big deal. In our house, it's not a big deal - there's no production over it, and it's not a high-stress sort of thing. But we take it seriously - keep my husband's bread to one small area, and inform stay-over guests to keep crumbs out of the way (and expect them to do so). Of course, that gets easier as you get used to the diet.

floridanative Community Regular

Only gluten for almost six weeks. I'm glad my family is 5 hours away. They would never understand you can't just pick the coutons off a salad. I don't think it would matter if I told them ten times it was like poison, some of them just wouldn't get it.

I think it makes family members really uncomfortable for many reasons. They don't want you to be really sick so they downplay your condition, they don't want to be really sick so they want to act like it's no big deal. And lastly, people in general don't like change of any kind. Since my dx people have looked at me like there is no way someone can survive without pizza and bread. It's like they can't deal with it as well as I can. I'm eating too much gluten-free stuff now - brownies, pancakes blah blah. So far I'm only doing without abdominal bloating and a good Kripsy Kreme doughnut!

erin24 Explorer

Thanks for the encouragemet. I don't think anyone can really understand until they have the stomach and all of the other problems and know how miserable it is. Wouldn't wish it on my worst enemy :)


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



Celiac.com Sponsor (A8-M):



CMCM Rising Star
Thanks for the encouragemet. I don't think anyone can really understand until they have the stomach and all of the other problems and know how miserable it is. Wouldn't wish it on my worst enemy :)

I really think most people tend to take their "cues" from you. So, if you are knowledgeable, determined and purposeful, also matter of fact yet firm about what you will and must do in terms of your diet, people will mostly accept that. If you are not firm about it, that leaves an opening for other opinions and people will sense your indecision and weakness. You have to really know what you are talking about and what you plan to do. Most people are followers, after all. And most people back down when they encounter firmness of opinion, especially when it concerns knowledge which they themselves lack. Know your stuff, be strong, be firm, don't argue about your actions. :)

heli Newbie

Erin - My family has been supportive because I was so sick and now I'm well. When people seem so aghast that I turn down pizza and they say, "What can you eat?" I very nicely (which is hard sometimes) name all the wonderful healthy foods that I can eat, and mention that I make my own bread. I came to the point that I can literally give up any food to feel better. i have a bunch of wierd IgG delayed food reactions so, I have given up a lot. However, "Nothing tastes like feeling good!"

munchkinette Collaborator

My mom takes it very seriously for ME. I've been trying to get her to go gluten-free though, and she hasn't taken that very seriously. I'm going to help her this weekend when I go home. She just feels too stressed to check all the labels for "natural flavors". She's been eating a lot less wheat and she'll cook/buy whatever I ask when I visit, but I don't think she's serious for her. I bought her Dangerous Grains. :)

The funny thing is, I thought my dad would be the one to think it was all bs, but he took it more seriously than I expected. Guess why- because it's my mother's fault. :P When I asked him about HIS side of the family's health history he thought I was full of it.

debmidge Rising Star

And your response is "Yes, you're right - it's no big deal because I know I'll have my family's full support and love. My foods will just not contain gluten and we may have to do things a little differently for me from time to time. But with everyone's love behind me I know it'll work out."

"My friend said the other day that there is no way just touching it or using it in shampoos can cause a reaction. (I had told her my old shampoo caused sores in my scalp, itching and hairloss). This is from a life-long friend. "

Don't you hate contrarians? (people who have to disagree with you on everything - you say black they say white).

I guess then she doesn't believe in fragrance allergies either. My husband has celiac disease with DH and I've seen the difference when he went gluten-free in everything. Less DH to almost none. As for me, I have such bad fragrance allergies : I've reacted to Paul Mitchell products, some lipsticks, lip glosses, some shampoos -- leaves my skin like I have DH (but they are contact dermatitits). But I guess that isn't possible either. Of course it's possible. Anything that the body sees as a foreign substance and it will react to it if it's sensitive to it.

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. - Scott Adams replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

    2. - Scott Adams replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Low iron and vitamin d

    3. - Scott Adams replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Healthy Gluten Free Foods low sugar that you found?

    4. - Scott Adams replied to lizzie42's topic in Traveling with Celiac Disease
      1

      Trip to Anaheim/Disney

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,242
    • Most Online (within 30 mins)
      7,748

    Maya Baum
    Newest Member
    Maya Baum
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Scott Adams
      Thank you for sharing this — it’s really important. The FDA is actively seeking public input on improving gluten and ingredient labeling, which could directly impact how people with celiac disease and gluten sensitivity shop and stay safe. Clearer labeling would help reduce accidental gluten exposure and make it easier to identify hidden sources of gluten in foods. I encourage everyone here who is affected by celiac or gluten sensitivity to read the announcement and submit their own suggestions — real lived experience matters and can influence policy changes that benefit the whole community.
    • Scott Adams
      A low tTG is great news, but it doesn’t always mean the small intestine has fully healed yet—iron and vitamin D absorption can lag behind for months or even years, especially in young children. Many kids need supplements for a period of time while the gut repairs itself, and that doesn’t necessarily mean it will be lifelong. Morning stomach pain is also commonly reported in celiac kids and can be related to slow healing, reflux, motility, or even low iron itself. It sounds like the supplements are clearly helping, which is reassuring, and ongoing monitoring with her doctor can help determine when (or if) doses can be reduced as absorption improves. 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. This article has more info:    
    • Scott Adams
      A lot of gluten-free packaged foods do rely on extra sugar, starches, or sodium to replace texture and flavor, so focusing on simpler options makes sense. Many people do better with naturally gluten-free proteins like eggs, plain yogurt, nuts, seeds, hummus, beans, and minimally processed protein bars with lower added sugar and higher fiber. Pairing those with whole foods can help you feel more “normal” without triggering symptoms. Subscription boxes can be hit or miss, so checking labels carefully and using them as an occasional supplement—rather than a staple—often works best.
    • Scott Adams
      This article is a few of years old, but my still be helpful.  
    • knitty kitty
      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
×
×
  • 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.