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Newly Diagnosed- Dealing With Rude Comments


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#1 eblue

 
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Posted 03 June 2013 - 10:47 AM

Hey everyone,

ugg...I am so frustrated. After 4 years of misdaignosed health problems, was diagnosed with celiac about 2 weeks ago. It has been a major adjustment in which I am still learning, but I can already tell a difference in my health. I have read as much as I possibly can to learn about the disease. My family is extremely unsupportive and it's getting the better of me. They have just slipped in little rude comments such as :

"I don't think it's that serious, a little gluten won't hurt you"....

 "at least you don't have crohn's disease, that would be really bad"

"you are being a hypocondraic...you really can't feel that bad...you are young and healthy! It must all be in your head"

"You will grow out of it, this won't be forever. Maybe you should try to eat a little bit here and there to get your body used to it. Kind of like allergy shots!"

"Why don't you want to go to steak and shake with me....I am sure you can eat something!"

When I politely turned down the casserole that my aunt made last week, my uncle roled his eyes and just got that annoyed look on his face.

 

I am getting so frustrated. I try to educate them as much as possible about the disease (they know NOTHING about it) but it seems like they don't care. They don't listen. In fact, a couple days ago I said something about celiac disease and my dad looked at me and said "What is celiac disease?" sheesh....it is the disease that I have dad....the one that I have told you about 20 times now....

 I try to educate them as much as possible  but they don't listen. It is extremely discouraging. I try to tell them that gluten doesn't just give me a stomach ache...it literally damages my body and could cause serious health problems later in life if i don't avoid it 100 percent. But they just tune me out. My husband and mom are supportive and willing to learn, but no one else is. I am so thankful for them. But it still is not easy when practically everyone else in your family treats you like this.

 

Have any of yall dealt with this? How did you deal with it?


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#2 GlutenStinks15

 
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Posted 03 June 2013 - 11:03 AM

My family is supoprtive thankfully, but I've been getting some comments at work.

 

I will say this though - my mom was like that when I was diagnosed with hypo thyroid disease about 16 years ago. She was telling me it was all in my head. I just had to ignore it and keep moving.

Bottom line is, it's YOUR health - so do whatever YOU have to do to stay healthy. Eventually they should come around and if they don't, it's THEIR problem.

 

I'm sorry I can't offer you anything more helpful.


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Celiac disease April 2013 -- so glad I got answers and can heal now.

 

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#3 IrishHeart

 
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Posted 03 June 2013 - 11:18 AM

Hi eblue and welcome to the family :) !

 

I will never understand why people question a diagnosis of celiac disease. it is a potentially life-threatening autoimmune disease and I wonder if they would have questioned a DX of MS or cancer,  too?

 

The way you stand firm and present it to others will be key in them taking you seriously.

 

Maybe this article by Danna Korn will offer some thoughts. 

 

 

http://www.celiac.co...Korn/Page1.html

 

Your family should be made aware of the fact that this is a hereditary disease and so, enlightening them may prove helpful.

 

I wrote my large extended family a letter after my DX. I am sure some of them ignored it and I am sure some of them said

"Well, that's not me; so...." but mostly, the people who saw my horrible decline in health for so many years knew it was real

and have never questioned my dietary needs. 

 

Just focus on getting well and learning all you can about celiac disease right now.


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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

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"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
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#4 surviormom

 
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Posted 03 June 2013 - 12:15 PM

Hey everyone,

ugg...I am so frustrated. After 4 years of misdaignosed health problems, was diagnosed with celiac about 2 weeks ago. It has been a major adjustment in which I am still learning, but I can already tell a difference in my health. I have read as much as I possibly can to learn about the disease. My family is extremely unsupportive and it's getting the better of me. They have just slipped in little rude comments such as :

"I don't think it's that serious, a little gluten won't hurt you"....

 "at least you don't have crohn's disease, that would be really bad"

"you are being a hypocondraic...you really can't feel that bad...you are young and healthy! It must all be in your head"

"You will grow out of it, this won't be forever. Maybe you should try to eat a little bit here and there to get your body used to it. Kind of like allergy shots!"

"Why don't you want to go to steak and shake with me....I am sure you can eat something!"

When I politely turned down the casserole that my aunt made last week, my uncle roled his eyes and just got that annoyed look on his face.

 

I am getting so frustrated. I try to educate them as much as possible about the disease (they know NOTHING about it) but it seems like they don't care. They don't listen. In fact, a couple days ago I said something about celiac disease and my dad looked at me and said "What is celiac disease?" sheesh....it is the disease that I have dad....the one that I have told you about 20 times now....

 I try to educate them as much as possible  but they don't listen. It is extremely discouraging. I try to tell them that gluten doesn't just give me a stomach ache...it literally damages my body and could cause serious health problems later in life if i don't avoid it 100 percent. But they just tune me out. My husband and mom are supportive and willing to learn, but no one else is. I am so thankful for them. But it still is not easy when practically everyone else in your family treats you like this.

 

Have any of yall dealt with this? How did you deal with it?

I just shared with my family what I have been going through.  By my family I mean my sister and father.  We already have a strained relationship, I can just imagine the eye rolling they are doing as they read the lengthy mail I sent them.  No we do not even talk anymore.  So, yes, I can get it.  I even worry about restaurants and friends treating me that way.  I make such strict requests if we go out even to a gluten-free restaurant, that I expect eye rolling and am so happy when it doesn't happen.  My hubby says we are paying for this, they better do it your way.  As for friends are they really your friends if they do not want to listen and understand?  Family, I cannot help you with, my husbands family is more supportive than mine, very understanding.  Good luck, I hope it gets better.


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Gluten Free 2012 - Dairy Free 2012 - Acid Reflux Diet 2013

Chronic Gastritis 2013 - Peptic Duodenitis 2013 - Hiatal Hernia 2013 - C-Diff 2013 - Endometriosis 2013 - Uterine Fibroids 2013

Patellar Tendonitis 2013 - Arthritis 2014 - NCGI 2014 - Erosive Esophagitis 2014 - Barretts 2014


I have a long list of physical ailments that were being grouped into age/gender by doctors.

Began Gluten Free and Casein Free after an Allergy Test trying to find answers to health problems that the doctors just were not answering well enough. Looking back through history, I have a lifetime of allergies and gastro issues.


Learn from yesterday, Live for today, and Hope for tomorrow. The important thing is not to stop questioning.

Albert Einstein

#5 notme!

 
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Posted 03 June 2013 - 12:38 PM

i had been very sick for a very long time, so the people who know me take it seriously.  one of my friends who was my 'recipe/foodie buddy' from church made me stuffed grape leaves when i was first diagnosed and told me there was no gluten in it.  when i opened the container it had lemon sauce on it.  I ALMOST DIDN'T CALL HER and ask her what was in the sauce, not wanting to be picky, but sooooo glad i did "oh, there *is* a little flour in the sauce, i forgot!  but it's only, like, a tablespoon"  - i think she rolls her eyes at me but i don't care lolz - if i try to explain anything to her, she sort of shuts off or changes the subject.  she invited my husband and i to a dinner party, haha, i just drank (my own) beer, oops, she forgot about my celiac .  that's ok, i already ate :)  

 

roll with it, baby, that's what i do.  good luck!


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#6 Ciel121

 
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Posted 03 June 2013 - 12:55 PM

  So sorry to hear that this has happened to you. I find that happens to me very often. My family is supportive, but strangers are another matter. My father has Celiac too (I got it from him) and he won't admit to strangers he has it because he's tired of the nastiness. What I don't get is what makes people think they can be nasty to someone sick just because they are completely uneducated and ignorant of a disease? Just don't get that.

   For me, I try to nip it in the bud...if I see eye rolling I say, "Excuse me, I see that I eye roll and that is rude and unacceptable.How dare you?" Being a teacher, I correct people. I need to take it head on and put them in their place because they are completely wrong to behave that way. Even if they feel that way, I don't care, they are still obligated to be polite to me if they don't want me to give them a correction or speak to them ever again.

   I think it is important to put your health first and I also have found for my mental health it is important to ignore completely, tune out those who are not supportive. Sorry, but people have to earn my friendship and for me to speak to them, family or not. I think it is so important for your health to protect yourself from gluten and toxic people. :-)


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#7 Nikki2777

 
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Posted 03 June 2013 - 06:42 PM

My immediate family was very supportive, but my mom was initially dismissive.  I broke down and told her that this was really really hard to do (stick with the diet) and that I needed her support.  Luckily she had just learned how to use The Google and did some research and did a complete 180.  Now she asks me about everything she makes for me and my family.  Can you somehow encourage your family to do a little research?  Can you offer them a night on the town if they research and answer a 10 question quiz (I don't know, just trying to figure out ways to incentivize them)


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#8 Adalaide

 
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Posted 03 June 2013 - 07:38 PM

By far the worst comment I get (which is recurring) is from someone who has a lymphoma associated with celiac and a raging family medical history that point to celiac in about a million ways. She has told me over and over that if she had to deal with what I deal with she would just eat whatever she wants and wait to die. Well... she's in luck I guess because that is exactly what she is doing.

 

What is maddening is that she feels the need to tell me over and over, that basically she would rather die than live with a restricted diet like I have to. Thanks for telling me my life is so meaningless I should kill myself. Bitch.

 

What is heartbreaking is that this is my MIL and I have to watch her kill herself inch by inch when she doesn't have to die.


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"You don't look sick or anything"

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#9 pricklypear1971

 
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Posted 03 June 2013 - 10:08 PM

By far the worst comment I get (which is recurring) is from someone who has a lymphoma associated with celiac and a raging family medical history that point to celiac in about a million ways. She has told me over and over that if she had to deal with what I deal with she would just eat whatever she wants and wait to die. Well... she's in luck I guess because that is exactly what she is doing.

What is maddening is that she feels the need to tell me over and over, that basically she would rather die than live with a restricted diet like I have to. Thanks for telling me my life is so meaningless I should kill myself. Bitch.

What is heartbreaking is that this is my MIL and I have to watch her kill herself inch by inch when she doesn't have to die.


I get pity from my FIL. He's had two open heart surgeries, a few more heart procedures, two new knees, a new hip, he almost can't walk, and can't lift his arms, and can't hear an elephant go through a wall. And he thinks its terrible I can't eat gluten. Seriously. I'm the one that deserves pity?

When I felt and looked like dog crap, that was fine. But now that I don't eat gluten and I feel and look better I am an object of pity. Interesting.

Interestingly, he happily eats anything I cook for him...except kale. He still can't remember potatoes aren't glutinous - it's only been two years....
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#10 surviormom

 
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Posted 04 June 2013 - 04:18 AM

i had been very sick for a very long time, so the people who know me take it seriously.  one of my friends who was my 'recipe/foodie buddy' from church made me stuffed grape leaves when i was first diagnosed and told me there was no gluten in it.  when i opened the container it had lemon sauce on it.  I ALMOST DIDN'T CALL HER and ask her what was in the sauce, not wanting to be picky, but sooooo glad i did "oh, there *is* a little flour in the sauce, i forgot!  but it's only, like, a tablespoon"  - i think she rolls her eyes at me but i don't care lolz - if i try to explain anything to her, she sort of shuts off or changes the subject.  she invited my husband and i to a dinner party, haha, i just drank (my own) beer, oops, she forgot about my celiac .  that's ok, i already ate :)

 

roll with it, baby, that's what i do.  good luck!

My hubby and I are former foodies/recipe lovers, I was always trying to copy something we had while on a date night or vacation.  I am just learning to be a foodie in a new way, and looking at my recipes differently.  I made our favorite pain de beuf the other day and replaced several things, but it tasted just as good as before and held up just as well.  The kids fought over the last piece.  Off topic, just wanted to add that there is life after for all of us Foodies.  


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Gluten Free 2012 - Dairy Free 2012 - Acid Reflux Diet 2013

Chronic Gastritis 2013 - Peptic Duodenitis 2013 - Hiatal Hernia 2013 - C-Diff 2013 - Endometriosis 2013 - Uterine Fibroids 2013

Patellar Tendonitis 2013 - Arthritis 2014 - NCGI 2014 - Erosive Esophagitis 2014 - Barretts 2014


I have a long list of physical ailments that were being grouped into age/gender by doctors.

Began Gluten Free and Casein Free after an Allergy Test trying to find answers to health problems that the doctors just were not answering well enough. Looking back through history, I have a lifetime of allergies and gastro issues.


Learn from yesterday, Live for today, and Hope for tomorrow. The important thing is not to stop questioning.

Albert Einstein

#11 surviormom

 
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Posted 04 June 2013 - 04:26 AM

By far the worst comment I get (which is recurring) is from someone who has a lymphoma associated with celiac and a raging family medical history that point to celiac in about a million ways. She has told me over and over that if she had to deal with what I deal with she would just eat whatever she wants and wait to die. Well... she's in luck I guess because that is exactly what she is doing.

 

What is maddening is that she feels the need to tell me over and over, that basically she would rather die than live with a restricted diet like I have to. Thanks for telling me my life is so meaningless I should kill myself. Bitch.

 

What is heartbreaking is that this is my MIL and I have to watch her kill herself inch by inch when she doesn't have to die.

That is why my father, sister and I have a strained relationship, that will be their attitude.  We have different outlooks on life.  Be who you are, that is all you can do.  It took a lot for me to tell them what I have been going through and warn them to be checked.   If you try to tell her, that is all you can do.  Do it a couple of times, if you need to, say I am not trying to preach to you, but, and give her some links to read.  


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Gluten Free 2012 - Dairy Free 2012 - Acid Reflux Diet 2013

Chronic Gastritis 2013 - Peptic Duodenitis 2013 - Hiatal Hernia 2013 - C-Diff 2013 - Endometriosis 2013 - Uterine Fibroids 2013

Patellar Tendonitis 2013 - Arthritis 2014 - NCGI 2014 - Erosive Esophagitis 2014 - Barretts 2014


I have a long list of physical ailments that were being grouped into age/gender by doctors.

Began Gluten Free and Casein Free after an Allergy Test trying to find answers to health problems that the doctors just were not answering well enough. Looking back through history, I have a lifetime of allergies and gastro issues.


Learn from yesterday, Live for today, and Hope for tomorrow. The important thing is not to stop questioning.

Albert Einstein

#12 Ksee

 
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Posted 04 June 2013 - 05:12 AM

I don't know if this will help or discourage but it's what I have found to be true. When some people decide you or whatever illness you may have isn't meaningful there isn't a lot to be done except walk away. I know, we are talking about families but the same as we wouldn't keep eating something making us sick to prove that point, throwing ourselves against the unbreakable perceptions of these people will only leave us bloody and bruised.

 

I have found some actually enjoy watching us struggle and in pain. It's not your problem but something very wrong with that person unable to offer understanding to those they should care about. I know this personally and it took me a long time to realize. I was reminded of it recently. I made a choice to disengage from the battle, which was difficult because for a long time there were increasing efforts to draw me back in. I left the door open for pleasant, healthy, conversation and relationship but there was no interest in that. Over time the effort to provoke grew more desperate and ridiculous before eventually stopping. 

Of course it meant that all communication stopped because of the lack of interest in anything pleasant. The other day I received an "accidental" message followed by an apology for unintentionally including me in sending such an unhappy letter. So after reading the "apology", I deleted the other and didn't reply. It was an obvious ploy and I wasn't interested. I've spent to much of my life in that trap.

Some people don't realize their lack of consideration but others do and actually enjoy what they do. I don't know if any of you are dealing with this but knowing the difference can save a lot of grief.

Good Luck
 


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#13 surviormom

 
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Posted 04 June 2013 - 06:31 AM

I don't know if this will help or discourage but it's what I have found to be true. When some people decide you or whatever illness you may have isn't meaningful there isn't a lot to be done except walk away. I know, we are talking about families but the same as we wouldn't keep eating something making us sick to prove that point, throwing ourselves against the unbreakable perceptions of these people will only leave us bloody and bruised.

 

I have found some actually enjoy watching us struggle and in pain. It's not your problem but something very wrong with that person unable to offer understanding to those they should care about. I know this personally and it took me a long time to realize. I was reminded of it recently. I made a choice to disengage from the battle, which was difficult because for a long time there were increasing efforts to draw me back in. I left the door open for pleasant, healthy, conversation and relationship but there was no interest in that. Over time the effort to provoke grew more desperate and ridiculous before eventually stopping. 

Of course it meant that all communication stopped because of the lack of interest in anything pleasant. The other day I received an "accidental" message followed by an apology for unintentionally including me in sending such an unhappy letter. So after reading the "apology", I deleted the other and didn't reply. It was an obvious ploy and I wasn't interested. I've spent to much of my life in that trap.

Some people don't realize their lack of consideration but others do and actually enjoy what they do. I don't know if any of you are dealing with this but knowing the difference can save a lot of grief.

Good Luck
 

That is why I use email to communicate with some family.  You are so right!


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Gluten Free 2012 - Dairy Free 2012 - Acid Reflux Diet 2013

Chronic Gastritis 2013 - Peptic Duodenitis 2013 - Hiatal Hernia 2013 - C-Diff 2013 - Endometriosis 2013 - Uterine Fibroids 2013

Patellar Tendonitis 2013 - Arthritis 2014 - NCGI 2014 - Erosive Esophagitis 2014 - Barretts 2014


I have a long list of physical ailments that were being grouped into age/gender by doctors.

Began Gluten Free and Casein Free after an Allergy Test trying to find answers to health problems that the doctors just were not answering well enough. Looking back through history, I have a lifetime of allergies and gastro issues.


Learn from yesterday, Live for today, and Hope for tomorrow. The important thing is not to stop questioning.

Albert Einstein

#14 w8in4dave

 
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Posted 04 June 2013 - 09:09 AM

Very very frustrating!! I am so sorry you have to go thru this! Support is a good thing and if you don't have it is is hard! I don't really say anything to my family except my Daughters and hubbs. I just say I am on a diet and cannot eat this and that! I don't have to answer to anyone but me! I personally believe that gluten is not good for anyone! Just because they can tolerate it doesn't make it good for them. When they ask what kind of diet I am on I say an all natural diet! If it comes out of a box or a can I cannot eat it unless it is natural :) 


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#15 Ciel121

 
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Posted 04 June 2013 - 12:20 PM

By far the worst comment I get (which is recurring) is from someone who has a lymphoma associated with celiac and a raging family medical history that point to celiac in about a million ways. She has told me over and over that if she had to deal with what I deal with she would just eat whatever she wants and wait to die. Well... she's in luck I guess because that is exactly what she is doing.

 

What is maddening is that she feels the need to tell me over and over, that basically she would rather die than live with a restricted diet like I have to. Thanks for telling me my life is so meaningless I should kill myself. Bitch.

 

What is heartbreaking is that this is my MIL and I have to watch her kill herself inch by inch when she doesn't have to die.

Wow, it is even more sad to hear that people have so little discipline that they would give up everything. Hmmm... send her to the army asap lol or better yet to a country where food is scarce. She'll change her mind in no time. We are so spoiled in the U.S. Scary.


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