Being asked to stop having celiac

[Reneeblack]

How do I address my 21 yr old when she tells me to just stop having celiac? I have shared medical information but she just laughs. I have run into quite a lot of people who think it's just all for attention. Just take some gas X or pepto.

[cristiana]

Hi Renee

Welcome to the forum!

Unfortunately this isn't all that uncommon.  There is a lot of ignorance surrounding this condition.  I have people in my own circle that have said, in the past, some ridiculously insensitive or ignorant things.  However, I've noticed over time they have stopped - partly because I've tried explaining things very sensitively and in simple terms the can understand - or they've heard it from other people who  perhaps haven't been so diplomatic and have put them right! 

What doesn't help though is that occasionally I've heard someone claim that someone they know has "grown out of coeliac disease".   Sadly that isn't possible - it's a chronic, lifelong condition.  Either that someone never had coeliac disease in the first place, or for whatever reason gluten consumption doesn't appear to be affecting them outwardly anymore (but if one is a coeliac, damage will be being done).

To a certain extent we all become "Coeliac Ambassadors" when we discover we have this condition, often finding ourselves to explain to people more than once why we can't consume gluten.  

I'm hoping others will be able to chime in and give more advice to you, but education is the answer - it's just easier said than done, as you are discovering.

Cristiana

Edited April 21, 2021 by cristiana
typo

[trents]

44 minutes ago, Reneeblack said:

How do I address my 21 yr old when she tells me to just stop having celiac? I have shared medical information but she just laughs. I have run into quite a lot of people who think it's just all for attention. Just take some gas X or pepto.

She is an adult and you must respect her right to maker her own decisions, good or bad, and to live with the consequences. Hopefully, the consequences will drive her to face up to the reality of her celiac condition before too much harm is done to her body. What you don't want to do is to nag her about it and drive a wedge into the relationship. Our adult children sometimes choose courses in life that we know they will regret but they must learn some things the hard way just like you and I did. If you are a person of faith, pray for her that her symptoms will become unpleasant enough that she will change her mind.

Edited April 21, 2021 by trents

[Susie0402]

2 hours ago, Reneeblack said:

How do I address my 21 yr old when she tells me to just stop having celiac? I have shared medical information but she just laughs. I have run into quite a lot of people who think it's just all for attention. Just take some gas X or pepto.

Renee, so sorry to read this.  Unless you have been diagnosed with celiac you just don't know.  Sorry she is being disrespectful to you.  Susie

[trents]

Oops! I misread your post Reneeblack. So you are the one with celiac disease and not your daughter and she is telling you to stop being celiac. When I read it the first time I understood it to say she was the one with celiac disease but in denial.

Does your daughter live in the same house with you? Can you tell us more about how this plays out in your interaction with her? Is she refusing to make allowances in her cooking for your need to be gluten free or in your cooking for her or when you go out to eat with her in choosing the restaurant?

[GFinDC]

There is a higher chance of her developing celiac disease since she is a first degree relative.  It would be a good idea to have her tested for celiac disease.  She may develop it at any time.

[cristiana]

16 minutes ago, GFinDC said:

There is a higher chance of her developing celiac disease since she is a first degree relative.  It would be a good idea to have her tested for celiac disease.  She may develop it at any time.

Hi GFinDC

That is a very good point.  Not meaning to hijack this thread, but do you know what the latest is on chances that a first degree relative has it?  When I was diagnosed back in 2013, I was told 1 in 10, but I'm not sure if that still stands?

Cristiana

[trents]

The number I have seen tossed around on this forum many times, and I have repeated it many times, is 44%. But maybe that is wrong. I used to hear 10% as well.

[cristiana]

Yes... that 44% rings a bell.  But whatever - it definitely worth getting tested.  My poor mother had a bad time with her health in later years and she never got tested.     

[Reneeblack]

3 hours ago, trents said:

Oops! I misread your post Reneeblack. So you are the one with celiac disease and not your daughter and she is telling you to stop being celiac. When I read it the first time I understood it to say she was the one with celiac disease but in denial.

Does your daughter live in the same house with you? Can you tell us more about how this plays out in your interaction with her? Is she refusing to make allowances in her cooking for your need to be gluten free or in your cooking for her or when you go out to eat with her in choosing the restaurant?

I apologize for not stating it clearly. I have celiac and my child does not. She is 21 and a US Marine. 😁. Unfortunately it seems she has been misinformed by others and asked me to "just stop being celiac". Her research consists of tiktok. It's just frustrating when it comes to family members or friends are not acknowledging or just passing me an alkaselter at a restaurant. And then there are those waitresses who think flour and wheat are two different things. Long sigh..I've had to restructure my inner circles. How do you all deal?

[Reneeblack]

3 hours ago, trents said:

Oops! I misread your post Reneeblack. So you are the one with celiac disease and not your daughter and she is telling you to stop being celiac. When I read it the first time I understood it to say she was the one with celiac disease but in denial.

Does your daughter live in the same house with you? Can you tell us more about how this plays out in your interaction with her? Is she refusing to make allowances in her cooking for your need to be gluten free or in your cooking for her or when you go out to eat with her in choosing the restaurant?

She doesn't live with me but has made these types of remarks when we are out to eat. I just ignore it now but it still hurts. She isn't the only fam fren and whomever that makes not so nice remarks. I assume this website has articles that are data filled yet easy to understand? I'm thinking of sending some to her and others. Good idea or...?

 

 

 

[trents]

Her being a marine probably predisposes her to see all of people's problems being solved by an act of the will and pulling yourself up by your bootstraps, excuse the pun.

We have all been through/going through, even after years of having a celiac disease diagnosis, what you are going through. There are no easy solutions to the social challenges that needing to eat gluten free poses. But with time you and those in your circle of family and friends learn to handle it with grace. albeit there will always be some awkward moments, at least occasionally. 

Patiently educating family members as to what celiac disease is and where gluten is found is part of the strategy. This takes time. You might consider composing a letter/handout or an email to family and friends that explains to them that celiac disease is an autoimmune disease and not an allergy and that gluten triggers your body to attack the lining of the small bowel, making you ill and posing some serious long term health risks such as osteoporosis and neurological damage.

Another helpful strategy is to sit down and think through or write down some well-worded responses, filled with grace, for those awkward moments at family gatherings that will diffuse the tension. Same for eating out, things you can say to waiters/waitresses that will get them on board. Maybe like, "I have a gluten-related medical problem. Can you and your staff help me to make some choices from the menu that will be safe for me?"

Renee, how long ago were you diagnosed?

[GodsGal]

8 hours ago, Reneeblack said:

How do I address my 21 yr old when she tells me to just stop having celiac? I have shared medical information but she just laughs. I have run into quite a lot of people who think it's just all for attention. Just take some gas X or pepto.

Hi Reneeblack, it's nice to meet you! 

I'm sorry you are having this experience. I imagine that it is very hard for you. How long have you had your diagnosis?

I think that there are a lot of people who still don't understand celiac disease. And sometimes they resist information for one reason or another.

My celiac disease has been more of the "silent" type. So there were no obvious indications to people other than me that anything was going on. And while I do believe that I was headed to a health crisis, it was caught before I got to that point. I think that for a while the people around me were in denial. That was very hard. I had lots of conversation with my counselor.

You are right. You absolutely can't just decide to not have celiac disease. And taking gas x or pepto won't solve the underlying issue. 

Talking to my counselor definitely helps me, and I highly recommend therapy. We walk a tough path. 

Keep loving your daughter, but you probably need to find any emotional support from someone else right now.

I hope this helps!

[trents]

Renee, do you live in an area where there might be a celiac support group?

[RMJ]

3 hours ago, Reneeblack said:

She doesn't live with me but has made these types of remarks when we are out to eat. I just ignore it now but it still hurts. She isn't the only fam fren and whomever that makes not so nice remarks. I assume this website has articles that are data filled yet easy to understand? I'm thinking of sending some to her and others. Good idea or...?

 

 

 

What type of information source might she respect the most?  Would she believe doctors, scientists, social media... I could find you articles on celiac from doctors/scientists at universities like Harvard, or a registered dietician on social media (Facebook)...

[GFinDC]

The link below talks about first degree relatives having a 44% chance of developing celiac disease.

https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-study-calls-for-screening-of-family-members-of-celiac-disease-patients/

 

[trents]

Good find, GFinDC.

[Reneeblack]

16 hours ago, trents said:

Renee, do you live in an area where there might be a celiac support group?

Idk. I will ck this site

[Reneeblack]

17 hours ago, trents said:

Her being a marine probably predisposes her to see all of people's problems being solved by an act of the will and pulling yourself up by your bootstraps, excuse the pun.

We have all been through/going through, even after years of having a celiac disease diagnosis, what you are going through. There are no easy solutions to the social challenges that needing to eat gluten free poses. But with time you and those in your circle of family and friends learn to handle it with grace. albeit there will always be some awkward moments, at least occasionally. 

Patiently educating family members as to what celiac disease is and where gluten is found is part of the strategy. This takes time. You might consider composing a letter/handout or an email to family and friends that explains to them that celiac disease is an autoimmune disease and not an allergy and that gluten triggers your body to attack the lining of the small bowel, making you ill and posing some serious long term health risks such as osteoporosis and neurological damage.

Another helpful strategy is to sit down and think through or write down some well-worded responses, filled with grace, for those awkward moments at family gatherings that will diffuse the tension. Same for eating out, things you can say to waiters/waitresses that will get them on board. Maybe like, "I have a gluten-related medical problem. Can you and your staff help me to make some choices from the menu that will be safe for me?"

Renee, how long ago were you diagnosed?

In 2007

[Reneeblack]

Harvard papers medical white papers are a good idea. I didn't think of looking there. I will start with that and sit down with family. 

With waitresses. I can always ask what kind of flower is in it. Roses petunias marigolds. Maybe that will get the attention haha. Thank you everyone I will look for a support group near me. 

[RMJ]

23 minutes ago, Reneeblack said:

Harvard papers medical white papers are a good idea. I didn't think of looking there. I will start with that and sit down with family. 

With waitresses. I can always ask what kind of flower is in it. Roses petunias marigolds. Maybe that will get the attention haha. Thank you everyone I will look for a support group near me. 

Here’s one from Harvard:

https://www.health.harvard.edu/diseases-and-conditions/celiac-disease