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

Need Advice, What To Do?!

Victoria6102

Recommended Posts

Victoria6102 Contributor
Victoria6102
Posted

What are your th

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

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

My thought is you'll get nowhere fast trying to use him as an example of what NOT to do.

People have a very big blind spot when it comes to people in his profession.

You may also consider that his choice to risk cc is part of his job (as weird as this sounds). A person in his profession would risk a lot of negativy by not accepting meals offered from members, etc. He may feel if he declines food and meals he will risk his ability to build rapport.

And he's probably right.

So, in addition to inviting disdain from the congregation for "being mean" to the preacher, you'd probably rub salt in the wound of someone who is struggling with his health and facing a tough career choice.

Perhaps try to approach him privately for a Celiac to Celiac discussion about coping with the congregation, or perhaps he could work the topic into a sermon on his own terms?

Metoo Enthusiast
Metoo
Posted

As some of you may know from my other posts, I have many teens at my church who don't believe me about celiac disease. This week we have an evangelist (preacher who travels around) preaching at our church. He has celiac disease. He eats what other people cook if they say it's gluten free, while I would not because I have my own pans and I check on every ingredient by calling the company to make sure it's gluten free. He eats the burgers at Five Guys while I don't because, atleast the one near me, they brown up the buns on the same grill as the burger so there is clear CC. I do eat the fries though :) he shares sticks of butter and mayo while I have my own of all of those to avoid CC. Not trying to degrade him and his decisions at all, just giving you the facts so you know the sutuation, Anyway, I was talking to his wife yesterday.

She said that he is NOT getting better and is actually having bleeding in his stomach. My question is, this would be a great opportunity to show these teenagers that I am not exaggerating. They think that I should be able to do all of the things that this person does. If I explain to them how he is very sick, maybe they can get an understanding of how I do have to be careful and that celiac is not made up. What are your thoughts? I don't want to bring up the subject and cause people to get madder or whatever...I dOnt want pity or anything. I just think this might be s good example to show how celiac does destroy your body if you don't eat gluten free and that I am not exaggerating. So, any thoughts on this?

I know that you are a teenager. I remember how I was treated as a teenager, and I didn't have gluten problems then!

But for me...as an adult, I think sometimes you have to realize that people just aren't worth arguing with, or trying to show them something. People are just ignorant, and sometimes they perfer to be that way. If they are mistreating you because you are different, then SHAME on them. I don't think though that going out of the way to defend yourself, or your difference in diet/eating because you have a health condition will really do anything to them. They are probably just the type, that no matter what they are going to look for a person to out, so that they feel better about themselves, because it gives them the feeling of being a more powerful group. These are people you probably do not really want to be friends with, so why try to pursuade them? Its a waste of your time and effort.

The very sad part of all this is that its happening inside a church function. I think if I were you, I would talk to your parents about this. At this point I think your parents need to be speaking to the church preacher/youth leader about the actions of the youth with inside the youth group, and how it doesn't really meet a christian perspecitve. They should be teaching love, embrassing others even though they are different...etc. At this point, I think your whole situation shows a major flaw in this youth groups leaders. Maybe they should have a meeting/discussion on how people are different, and how singling them out can make them feel...etc.

Victoria6102 Contributor
Victoria6102
Posted
  • Author

Oh no, it's nothing against the preacher at all, you're right, he does have to accept the meals in order to not offend people which I totally understand! And i am happy that I don't have to be in his position where I'd have to trust what other people cook for me! He is truly sacrificing his health for what he knows God wants him to do and I respect that very much! I did not mean to sound like I want to use him as an example of someone who has poor judgement, because he doesn't have poor judgement! Sorry if that came across that way. Just I saw it as proof I guess, that being as careful as I am is not exaggerating, does this make sense better?

pricklypear1971 Community Regular
pricklypear1971
Posted

Oh no, it's nothing against the preacher at all, you're right, he does have to accept the meals in order to not offend people which I totally understand? And I am happy that I don't have to be in his position where I'd have to trust what other people cook for me! He is truly sacrificing his health for what he knows God wants him to do and I respect that very much! I did not mean to sound like I want to use him as an example of someone who has poor judgement, because he doesn't have poor judgement! Sorry if that came across that way. Just I saw it as proof I guess, that being as careful as I am is not exaggerating, does this make sense better?

I'm not saying you have anything against the preacher, but if you start using him as an example of what happens if a Celiac doesn't adhere to strict guidelines (ie:yours), your snarky little frenemies and everyone else will go after you for attacking the poor preacher.

I'd try talking to him one to one. You never know, you may be able to help each other.

Victoria6102 Contributor
Victoria6102
Posted
  • Author

Your right, thank you for your advice, prickly pear. I wouldn't want to hurt him or be thought of as someone who degrades preachers. Thank you for that insight, very helpful! I guess I was thinking so much about how maybe I could finally convince them that I didn't think about the entire situation....I had better start thinking of others before myself:)

pricklypear1971 Community Regular
pricklypear1971
Posted

Your right, thank you for your advice, prickly pear. I wouldn't want to hurt him or be thought of as someone who degrades preachers. Thank you for that insight, very helpful! I guess I was thinking so much about how maybe I could finally convince them that I didn't think about the entire situation....I had better start thinking of others before myself:)

I think you and the preacher should have a nice convo over some gluten-free food. Perhaps you could cook for him? He'd probably appreciate a safe meal. Then ask for his help with your problems with your frenemies. It may help him face a few demons of his own, if you know what I mean??

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

Celiac.com Sponsor (A8-M):


mamaw Community Regular
mamaw
Posted

I agree with the other posters on this one..Plus some people have little or no reaction with CC.(Yes, I understand this man is having problems) he needs to be the one to make changes far as his diet goes....He needs to address his followers...if he desires change...

In the meantime you have already figured out that some things cause you issues.. But you too are still having CC when you eat the fries when they are fried in oil that also fries breaded foods..so there fore some CC issues may not be a problem for you either since you eat the fries...

You are very knew to the gluten-free lifestyle so you also are still learning....

Do you have a support (gluten-free) near you? If so, this may be a good time to have a knowledged member of the gluten-free support group come to your church & do a presentation about celiac& the gluten free lfestyle...Everyone would learn from this social event. & no one's feelings would be crushed......

Victoria6102 Contributor
Victoria6102
Posted
  • Author

At five guys, they only make fries in the fryer....I don't eat fries anywhere else.:) I am as careful as is possible so I'm very 100% sure I'm not getting any CC, as when I drank out if someone else's water bottle By accident, I got glutened. :P anyway that's a whole other thing lol!:)

That's a good idea! Our church is having a potluck tomorrow which he will be here for, and would most likely be glutened if he ate anything. Maybe I'll make some extra food for him, too. That way he can be safe for once. It is super hard for him I'm sure! He doesn't have an outward reaction when CCed, as far as I'm aware, which makes it harder also I bet....tough situation for him.

Thanks for all your advice :)

Victoria6102 Contributor
Victoria6102
Posted
  • Author

And I like that, "frenemies" is a great way to put it! Haha!

As far as support groups, the closest one I'd almost an hour away and it's once a month on nights when I'm busy. So I find it would not work. Plus I get help from this forum and that's enough for me! I appreciate the idea of having a speaker come, although I know these "frenemies" well enough to tell you that would most likely make it worse for me :P good idea, if the people around me were open to learning about celiac.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748
    Patty6133
    Newest Member
    Patty6133
    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

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      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
      New (possible) celiac diagnosis

      By Judy M · Posted

      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
      Patiently Waiting to See Results

      By Scott Adams · Posted

      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
      Gluten free beer ?

      By Scott Adams · Posted

      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
      Patiently Waiting to See Results

      By trents · Posted

      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.