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

People Not Taking You Seriously


LePandaRouge

Recommended Posts

Februaryrich Rookie

I just went gluten-free for 2 weeks now and I've been doing really good since. My dad seems to be more supportive than my mom and more than your aunt for sure lol. I showed them how my hair doesn't fall out anymore since I went gluten-free and they seemed to be impressed with the results so they support me a lot. We're going to get some gluten-free stuffs for the first time tomorrow, gotta go grabs those Larabars everybody's been talking about haha


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



Celiac.com Sponsor (A8-M):



  • Replies 52
  • Created
  • Last Reply
Kay53 Newbie

How do you deal with family members and friends who don't take you seriously?

I discovered I have celiac disease and went gluten free 6 months ago. The problem is I've been living abroad for several years so my family has not witnessed my symptoms. All these years I hid from them that I suffered from fibromyalgia and chronic fatigue as well as constant GI symptoms and mental health issues, etc...

And so I'm visiting them this summer and they seem to think going gluten free has only been a diet choice, nothing dangerous. I tried telling them about the symptoms I was getting. Also, my mother has suffered the same symptoms all her life and suffers from cerebellar ataxia and has had difficulty walking for a few years as a result of gluten. I tried explaining this to them and that if I carried on eating gluten, I'd end up like this too. But it's like their face goes blank and they stop listening at this point.

So I feel like I constantly have to defend myself. They especially don't understand why I'm being careful with cross contamination and get annoyed each time I say I can't eat something.

For example, I was making gluten free pasta at my aunt's house the other day and she wanted me to use her colander. I said I'd rather not as they use it for wheat pasta all the time. But she was arguing that it's fine and that it's washed very well. I still said no, but she wouldn't let go.

Or another example of annoying conversations we have is:

Aunt: "can you eat doughnuts?"

Me: "No, unless they are gluten free"

Aunt: "I have some doughnuts in the fridge, can you eat those?"

Me: "Most likely not as doughnuts are generally made from wheat flour unless you took them in the gluten free section, but no one buys baked goods in the gluten free section unless they're looking for gluten free specifically"

Aunt: "You never know, maybe I grabbed gluten free doughnuts without realising, let's have a look"

- So Aunt gets up, walks to the fridge and brings me the doughnuts -

Me: "No seriously, they will be made of wheat. You don't go to gluten free bakeries or shop in the gluten free section unless you are gluten free. It's not something you just stumble on accidently. There are not enough gluten free products on the market for that to happen, unfortunately."

Aunt: "You don't know that. You don't know until you read the ingredients."

- Aunt hands me the doughnuts -

Aunt: "Go on, check the ingredients"

Me: "Fine"

Me: "First ingredient - wheat flour"

Aunt: "ah"

Aunt: "But I have biscuits too, can you eat those?"

Me: "No, biscuits are made of gluten too"

Aunt: "But maybe these are made with gluten free flour"

Me: "No, as I said, baked goods on the market are very rarely gluten free"

Aunt: "Why don't you just look at the ingredients before dismissing them?"

Me: "Because I know they contain gluten! These things are made with wheat flour!"

- Aunt gets up and gets the biscuits and makes me read the ingredients -

Me: "Made with WHEAT FLOUR"

Aunt: "Ah, well what about these other biscuits?"

Me: "As I said, baked goods are generally a no..."

*Sighs*

And so on.... And it gets tiring for me... and them...

And the problem is, they raise the gluten issue in every conversation. And when I respond they always seem tired and bored of me talking about gluten. Well then why don't they just let me eat what I want and stop questing and interfering. :rolleyes:

Is anyone in the same situation? How do you deal with that? :rolleyes:

(rant over)

That is great. And Yes, others do not seem to understand. Loved this, thank you

AVR1962 Collaborator

Well, it is a relief to know that I am not the only one dealing with this. I think a person really has to walk in our shoes to really realize. I went to a family reunion this past summer and as I watched my family eat their pastas and bread I was thinking 'this stuff is killing them.' I have tried a couple times to explain to people and they just do not get it. We are told all our life that eating bread is healthy so when someone tells you something different you have to be out of your mind, right? You have to do what is best for you and if they don't get it, it is unfortunate for them. I would though, some way some how get your mom in for testing. She could put years of ataxia issues behind her, that's been one of my biggest issues, newly diagnosed and contining to improve!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,898
    • Most Online (within 30 mins)
      7,748

    MLucia
    Newest Member
    MLucia
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for 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.