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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

How To Deal With Unsupportive Friends?
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30 posts in this topic

Hello everyone, 

 

I've been gluten free since January. i don't have an official diagnosis, but I plan to see a doctor soon to try to get diagnosed. I don't have health insurance, so not sure how that will go. 

 

Anyway, I've told all of my close friends about my struggles with what I believe to be celiac disease since January. At first they were generally supportive. Recently, more and more I've been getting the impression that they don't believe that my symptoms are as severe as I claim them to be. When I complain to them about accidental glutenings and that I usually get sick for 1-2 weeks from just 1 meal with a small amount of gluten (including from cross-contamination), they react to me with doubt and are very dismissive. For example, I was accidentally glutened recently at a restaurant. I told my friends about it, and they all said it's impossible that gluten would cause me to feel like crap for a week or more, even after I told them I get this same set of symptoms for the same amount of time every single time I accidentally eat gluten. And they said there's a mild cold/flu thing going around, so OBVIOUSLY I had that and it wasn't gluten related. 

 

I don't really know what to do anymore because I'm not making it up and I'm not exaggerating, and their consistent doubt and dismissiveness is making me resent them a little. I mean, they know very little about celiac disease/gluten intolerance. I've done extensive research on it since January. And how can they presume to know how I'm feeling and what symptoms I'm having? They're not in my body. They think it's a placebo effect. Then how do they explain the several times I've been glutened and was in denial about it at first till the symptoms get so bad that it's undeniable? And all the chronic health issues I had that magically went away after I started the gluten free diet? 

 

I'm sure they'll believe me after I get officially diagnosed, but I don't even know if that's going to happen because I've heard that you have to eat gluten for several months in order to get diagnosed, and I'm not willing to be sick and miserable for months just to get diagnosed. 

 

How do you all deal with people who constantly doubt you and think you're making it all up? 

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I would either just tell them, Because I am a straight forward person. Well believe me or not it happens that way. All my friends have been really supportive. I don't know how old you are, but I am 53 y/o and I think people that are a "lil" older tend to be a lot nicer about things of this nature. 

And really there are people here that are officially Dx'd and still no support from family and friends. I wouldn't really worry about it myself. But just to give you an inside. Look up restaurants in your area or restaurants where ever you are going to see what ones have a gluten free menu. After being glutened at restaurants a few times, I tend to go for the meals that are naturally Gluten Free. Like a Salad that doesn't have croutons, or a breakfast with potatoes and eggs, no toast. ... It seems to be what works for me. I fortunately do not get sick for a long time. It is an a few hrs. But everyone reacts differently. 

I know I tell ya if I was in your shoes I'd feel the same way about getting Dx'd , If they told me right now that my test was fubbled up and they wanted to do it again, so I'd have to go on Gluten. I'd say nooooo thank you. But some people seem to need that Dx to be faithful to the diet. Because they have not been "Truly) Dx'd ... It is a personal decision for you. 

And don't forget! You can always find new and  supportive friends!! 

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You shouldn't have to go through pain and illness just to prove it to your 'friends'. I had to eat gluten regularly for 6 weeks before my diagnosis and in was hard going, I can tell you! You should not have to 'prove' anything, you know your own body. Also everyone's different when they have accidentally consume gluten, BUT, are you sure you have only been glutened the once and not several times over a few days, if you are being ill for so long? A food journal would be useful to find out for sure.

Personally, I'd be of the view, "It's my body, my life, my business" and if they didn't like it, they can jolly well lump it. You've always got us, here on the forum, to discuss any issues with.

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Maybe, just maybe, you have gone overboard in talking about the problems with gluten. People do get tired of hearing about any sickness. Try not talking about the problem for a while and see if they are more receptive when you mention it occasionally.

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Yep, when I am not feeling good, close friends will ask if I've been glutened, but other than that, if I have to skip out on a planned event, I just say I'm not feeling well and leave it at that.

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I tend to not tell my friends about it mostly because they really don't understand and I can't expect them to. It really only comes up if we are eatting together, but even then I go about my gluten free diet as normal regardless of their comments or sighs of disgust.

I rarely tell my friends about my experiences being glutened and really only disscuss this with my partner who believes and has seen me glutened. I learned at a really young age, when I was chronically ill, that people aren't interested in hearing about illnesses all of the time. Try to find support in other parts of your life, like here because we all know what its like, and accept that your friends will never get it. Hopefully they will tolerate it rather then torment you about your choices.

 

Honestly, I take the time with my friends, who don't understand my illness, as a chance to disconnect from the way I am feeling or my bad health experiences. It gives me the time to forget about it and focus on other aspects of my life.
 

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My MD did warn me that I would drive everyone crazy talking about this for 6 months!  Only just recently, some are starting to listen, since it is no longer deniable to them!

 

D

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It seems there are a couple of issues at play here: your desire to get diagnosed coupled with your (legitimate) worries about going back on gluten for a diagnosis; your lack of insurance because these tests can get pricey; and, finally, the skepticism of your friends. The bottom line is that you know how being gluten-free feels, and you know how you feel when you've ingested gluten. Your friends can express all the doubts they want, but they clearly don't know what happens when a person ingests gluten.

 

If you want to continue hanging out with this group, you're likely best served by carrying on with your diet and ignoring their doubts. As long as they're not sabotaging your diet, you can feel good about your course. If the relationship turns from skepticism to sabotage, then you have a serious problem.

 

Some people really get it when it comes to be gluten-free. They may not understand the nuances, but they understand that gluten makes us sick. Others simply don't or won't. There's no point in trying to convince them; if you're lucky, they'll come around when they see how well you're doing. 

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Try suggesting a restaurant that you are comfortable with as much as possible.  If the gathering is already arranged, try eating before, after, or bring something of your own.  I whip stuff out at the table all the time.  It was awkward the first time but it really isn't a big deal.  After 5 minutes the novelty wears off and you are just eating like everyone else.

 

I wouldn't write off any friends unless they outright make fun of you or make you feel guilty by intent.  At the same time, don't just rollover and be submissive to their doubts.  My friends were really cool about letting me talk about it at first.  Eventually, I had to apply some self awareness and make a concentrated effort to not make it a talking point unless someone brings it up.  When it comes up, if I look cool and casual, they will take it cool and casual usually.

 

Them "Hey, want to meet us at BW-3 for wings?"

 

Me "Definitely, lets meet up!  Let's go to (fill in the blank) instead because I can't eat their wings, they put them in a fryer with other stuff the has breading in it."

 

Them "That's right, I forgot about that.  But you can eat at (fill in the blank)?"  

 

Me "Yep"

 

Them "See you there"

 

That's how it usually works for me...  Good luck!

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I would try to think of it from their point of view.  Before I was educated about this, I wouldn't have believed it either.  Many of us become somewhat obsessed when we first find out what has been causing us so much grief for so long.  After awhile you realize that what interests you isn't necessarily what interests others.  Then you can get back to the latest fashions, TV shows, books and gossip.

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It actually seems the more people I tell, or hubby tells, the more we find people know about Celiac, they have a cousin or uncle. Or a friend that has it. Sometimes people don't want to deal with stuff they don't understand.  I guess I should feel more blessed because none of my friends have been un supportive. But then again these are the friends that have seen me go thru so much in the last few years. running to the rest room all the time, and not understanding why I am in there most of the time after we eat. So now they get it! So what I am getting at is maby if you educated them more about your problem the would understand and be more supportive. 

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In unrelated news...  I was sitting in church the other day and there was a reference to wheat or bread in the bible...  I leaned over and told my girlfriend, "My Jesus doesn't eat wheat."  HAHA!  Okay, so maybe I thought the comment was funnier than it really is but she looked at me, laughed, and started shaking her head.  Your talking about interactions with family and friends made me think of that for some reason.

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Haha Thats pretty cute eers03

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Hello everyone, 

 

I've been gluten free since January. i don't have an official diagnosis, but I plan to see a doctor soon to try to get diagnosed. I don't have health insurance, so not sure how that will go. 

 

Anyway, I've told all of my close friends about my struggles with what I believe to be celiac disease since January. At first they were generally supportive. Recently, more and more I've been getting the impression that they don't believe that my symptoms are as severe as I claim them to be. When I complain to them about accidental glutenings and that I usually get sick for 1-2 weeks from just 1 meal with a small amount of gluten (including from cross-contamination), they react to me with doubt and are very dismissive. For example, I was accidentally glutened recently at a restaurant. I told my friends about it, and they all said it's impossible that gluten would cause me to feel like crap for a week or more, even after I told them I get this same set of symptoms for the same amount of time every single time I accidentally eat gluten. And they said there's a mild cold/flu thing going around, so OBVIOUSLY I had that and it wasn't gluten related. 

 

I don't really know what to do anymore because I'm not making it up and I'm not exaggerating, and their consistent doubt and dismissiveness is making me resent them a little. I mean, they know very little about celiac disease/gluten intolerance. I've done extensive research on it since January. And how can they presume to know how I'm feeling and what symptoms I'm having? They're not in my body. They think it's a placebo effect. Then how do they explain the several times I've been glutened and was in denial about it at first till the symptoms get so bad that it's undeniable? And all the chronic health issues I had that magically went away after I started the gluten free diet? 

 

I'm sure they'll believe me after I get officially diagnosed, but I don't even know if that's going to happen because I've heard that you have to eat gluten for several months in order to get diagnosed, and I'm not willing to be sick and miserable for months just to get diagnosed. 

 

How do you all deal with people who constantly doubt you and think you're making it all up? 

I am sorry you have to deal with this.  I am new (haven't been officially diagnosed).  I have my consultation with a GI next week. My primary says I definitely have Celiac or Ulcerative Colitis or both.  My Mom thinks this is because of all the "crazy" diets that I have been on, which I am not sure what I am talking about.  She also thinks that I just need to eat better and it is easy to implement a gluten-free diet.  She thinks that I am sick all the time and that this is no big deal.  I am dreading visits because in the past when I have turned down junk food (I don't eat sweets), sodas, etc, she tells me that just one won't hurt me and seems very upset when I don't give in.  I am almost 40 and still don't how to deal with it.  I cannot imagine how to respond if and when I have to go gluten-free.  I wish you luck with dealing with your friends.  

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The words "unsupportive friends" seem to be an oxy-moron ;)

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I am sorry you have to deal with this.  I am new (haven't been officially diagnosed).  I have my consultation with a GI next week. My primary says I definitely have Celiac or Ulcerative Colitis or both.  My Mom thinks this is because of all the "crazy" diets that I have been on, which I am not sure what I am talking about.  She also thinks that I just need to eat better and it is easy to implement a gluten-free diet.  She thinks that I am sick all the time and that this is no big deal.  I am dreading visits because in the past when I have turned down junk food (I don't eat sweets), sodas, etc, she tells me that just one won't hurt me and seems very upset when I don't give in.  I am almost 40 and still don't how to deal with it.  I cannot imagine how to respond if and when I have to go gluten-free.  I wish you luck with dealing with your friends.  

My Mom thought my diet was "crazy" too.  Moms do care.  I hope you will get to the bottom of it with gluten and find health in it.

D

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In unrelated news...  I was sitting in church the other day and there was a reference to wheat or bread in the bible...  I leaned over and told my girlfriend, "My Jesus doesn't eat wheat."  HAHA!  Okay, so maybe I thought the comment was funnier than it really is but she looked at me, laughed, and started shaking her head.  Your talking about interactions with family and friends made me think of that for some reason.

lolz, eers!  :D mine too, either!  every time they talk about the wheat and the chaff, i think to myself, well, i guess i'm stuck with chaff...................   my husband has played Jesus every time they need one for easter (he's a long haired hippie type), etc, so i guess i got an 'in' being married to 'Jesus' ;)

 

The words "unsupportive friends" seem to be an oxy-moron ;)

lolz, colleen!  :lol:

 

i have found out that i have 2 or 3 sub-groups of 'friends' (let's get real, i only have one friend lolz) i have the ones who quit inviting me to their shindigs ("oh, you can't eat anything and it's a dinner.....")  the ones who forget every 2 seconds and try to feed me (mostly church peeps) the ones in the small circle who want to do *anything* they can to accomodate me (i tell them i'm fine, but they fuss anyway, make sure they bring out the unopened bag of whatever.... and plop it down in front of me..... dude, i don't LIKE those just because it says gluten free on the box/bag, doesn't mean i HAVE to eat it????  STOP IT)    you'll find out who's who.

 

i wish my mom was still around so i could tell her:  look, mom, they finally figured out what was wrong with me!  she always worried so much - i can't tell you how many doctors she took me to.  if she had a couple of more years with the internet, she would have figured it out.  (and i wouldn't have listened to her!  lolz!  love you, mom)  my point is, take it easy on mom  :) 

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I know how you feel! My sister thinks I'm making it all up. I told her about how I got deathly ill after taking communion (my pastor said he'd get gluten-free wafers and gave me a regular one instead without telling me). She was like, "really?!? From just one communion wafer?" Well, yeah, it's a lot of gluten! She's always asking, "are you still doing that gluten free thing?" Yes, I'll be "doing that thing" forever so I can be able to enjoy life and not spend it curled up in a ball crying in pain.I tried to tell her about how miserable I was with my daily headaches for 12 years, and when that switched to daily migraines in January. Her response: "well, everyone has headaches." (in a tone of voice that implied that I'm a hypochondriac).

 

People like that are the only reason why I would consider getting an official diagnosis ("real" celiacs give me crap, too. Like their issues are genuine & mine are made up. So sad!). I can tell myself that they are just ignorant, and it doesn't matter what they think because I am the one in control of my health. But it's still hurtful. I guess just try to keep educating people if they will listen. 

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Oh, and if I get annoyed enough, I will say, "You're right. I must be making this up for attention. It's just so much fun not being able to eat my favorite foods anymore." People are so dumb! Why would we make this stuff up?!?

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Absolutely!! I agree it is too hard of a diet to follow. If you are not seriously having problems!! Celiac or sensitive!! I have a friend Bless her heart. Every time she goes to the store she will buy me something. Like gluten-free crackers, or something. I tell her "Don't buy me this stuff!"  "I didn't eat it before going gluten-free I won't eat it now" I try to explain to her I am eating more natural foods instead of processed. Something that is hard for her to wrap her head around :) It's ok she is just trying to help or support me. I took all the crackers to my daughters , I made a cheese and meat tray and took the crackers :) It's all good! 

People always ask me "so when can you start eating regular?" I say If you mean by regular your talking Gluten , I can never eat it.. It is damaging to my body ... I cannot ever eat it... 

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I tried to tell her about how miserable I was with my daily headaches for 12 years, and when that switched to daily migraines in January. Her response: "well, everyone has headaches." (in a tone of voice that implied that I'm a hypochondriac).

nope - everyone does *not* have headaches - i used to think that, too, because i had constant headaches.  then, poof, it went away after i was gluten free for awhile.  i didn't even realize that i had a continual, dull headache until it finally left  :)  she is your sister?  chances of her having symptoms are pretty high, she may even be afraid of the whole celiac thing...

 

i am right now headache free and i can't remember the last time i have had one.  (probably a few months ago and it was created by krazy hormones - explainable and short lived)  i take, like, 1 pain reliever every 2 months on average (1 ibuprofen tablet)  that is like a record :D

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Same for me! I will be 27 this month, and I have had a DAILY headache since middle school at least. Maybe sooner- I can't remember. I just remember taking excedrin regularily in middle school. I HAD to get help when they changed to daily migraines. Really, it was a month-long migraine that was better or worse depending on the day. I could hardly function. At times I couldn't function. I said good bye to gluten, and they disappeared almost immediately. I've lost 40 lbs, and I have ENERGY, and MOTIVATION now. This is definitely working out for me! Yes, she's my sister. I'd love to talk to her seriously about it, but she thinks it's a load of crap. You just can't change someone's mind when they have already decided what they're going to think. I AM making progress on convincing my mom to try gluten-free and see if it helps some of her symptoms. I worry about her because she doesn't have health insurance, and if her body is being damaged, it will cost a LOT to fix it someday.

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Thanks for the replies everyone! 

I think I'm going to stop talking to them about it, unless they specifically ask about it, or if it's unavoidable (like when going out to eat with them). 

I finally have an appointment tomorrow with the doctor so hopefully I will get some definite answers soon. 

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I wish you luck with your friends. I was diagnosed less than 2 months ago & I cant get my family to understand the severity of the situation. My husband has his moments... it makes me feel kinda depressed to say the least.

You are not alone, hang in there

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I wish you luck with your friends. I was diagnosed less than 2 months ago & I cant get my family to understand the severity of the situation. My husband has his moments... it makes me feel kinda depressed to say the least.

You are not alone, hang in there

Welcome Miss Chris!

 

It is hard to have celiac disease and it can be depressing!  I was diagnosed in March.  Fortunately, my husband's been gluten-free for 12 years.  Who would have thought that both of us would have issues with gluten?  Even though I was already gluten-free savvy, I took my diagnosis hard.  But six months later, I'm feeling pretty good thanks to the support of this forum.  

 

I admit it has been hard for family and friends to get "it".  But, slowly they are coming around.  

 

So, when you need some support, feel free to talk to some new friends (ones that have been walking in your shoes!)  And that goes for everyone!

 

Have a great weekend!  

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