Tired Of Relatives In Denial About Celiac/gluten Problems

[Tidings]

Hello, folks,

Am sure this topic has been discussed somewhere among all the many fascinating topics on this site. Thought I'd start a new thread devoted specifically to the frustration/problems experienced when immediate relatives constantly DENY that gluten can be the source of our relentless G.I. problems, and ask how others deal with it.

It is bad enough when doctors label us "hypochondriacs" and "gently suggest" "YOU SHOULD SEE A THERAPIST!" (haha), but when we hear near-daily remarks from siblings or spouses or parents or others who STILL RESIST acknowledging that GLUTEN causes us havoc, suffering, and real organic damage, it can be demoralizing and depressing.

What do you think motivates this reactive DENIAL on their part and how do you deal with it? (I for one think these people feel THREATENED by the very (good) possibility that THEY TOO might be vulnerable to similar gluten-problems and thus they have erected a thick wall of DENIAL as a defense mechanism, while they continue to eat their "daily bread" [and pastries, pizzas, macaroni, pasta, etc., etc. ad infinitum].)

Upon recently trying to discuss family history of intestinal cancer and similar stomach problems, on two separate occasions with two different siblings, both of them BLEW UP and basically wrote off the question as a waste of time (and wrote me off as a hypochondriac)! This was not too surprising because neither person is very supportive of anybody with health issues, but it was disappointing because I not only did not net any helpful information about similar intestinal problems among our relatives and forebears, but also came away with that "UNVALIDATED" FEELING in my guts once again. (I think at least some of you know what I mean by "UNVALIDATED" DISCOMFORT IN THE GUTS--as if we don't already have enough pain, discomfort, and dysfunction in that region!)

Feel free to share your thoughts on this and I look forward to reading any replies.

Thanks and good wishes for good health to all of you.

[cassP]

oh you're definitely right about the denial defense (because they dont want to face the possibility that they too MAY have to change their diet)... but i think they're also validated in their denial because of our medical system here in the U.S.

everyone shrugs it off as the "disease du jour".. and the docs still act in disbelief.. so it doesnt help

i TOTALLY share your frustration! i would love my whole family to be tested..

[Dixiebell]

My granny! This past Christmas were talking about my son and she informed me that after she had my mom (1950's) she stated having stomach problems. She was put in the hospital and told to eat gluten-free. When she felt better she went back to her old ways. All my life she has had stomach problems. When we would go to the beach we had to make sure a bathroom was close. Everytime we would go shopping she ended up in the bathroom. I think at some point she had colitis. This past year she has gone from a size 9-10 to a 5. Almost everytime I talk to her she tells me how she is still losing weight. She always has a cough and sinus trouble. My aunt was diagnosed with graves and I think they destroyed her thyroid. She also has some type of asthma and has always delt with her weight. My mom has delt with stomach problems ever since I can remember. She would also have problems during her period. Early menopause started in her 30's. She has been dealing with depression and insomnia for the past few years and has gained an enormous amount of weight. Also my granny told me her sisters, I think there was 4, all had stomach problems. All but one are gone now from different types of cancers. I ask them on occasion if they would please go and just get the blood test done so that their future gran and great grand children will know. I almost think it might be kind of like a hobby for some to 'collect illness stories' and if they were't ill they would not have anything to talk about.

[starrytrekchic]

Are they questioning your eating and your health...or are you questioning theirs? It's a little unclear from your post. If it's the second, I'd caution from trying to convince them of anything--the more you do the more you'll alienate them--this is generally true of a lot of things!

But if they're being actively disrespectful of your personal choices, then feel free to fight back. The best thing you can do to convince them of anything is to heal on your own. And when they ask why you're looking so good, say it's because of being gluten-free. Talking generally doesn't help much; results do. They have to come to it in their own time.

[srall]

Are they questioning your eating and your health...or are you questioning theirs? It's a little unclear from your post. If it's the second, I'd caution from trying to convince them of anything--the more you do the more you'll alienate them--this is generally true of a lot of things!

But if they're being actively disrespectful of your personal choices, then feel free to fight back. The best thing you can do to convince them of anything is to heal on your own. And when they ask why you're looking so good, say it's because of being gluten-free. Talking generally doesn't help much; results do. They have to come to it in their own time.

I do agree with this, but I have to admit it makes me crazy to see my brother suffer much much more severely than I ever have and continue to eat gluten and wheat. He was told by a doctor a couple of years ago that he did not have celiacs so he just figured "Hey, gluten's not the problem." Since I've gone gluten free we've talked about it several times and he's at the point where he knows that's probably what his problem is, yet he thinks it would be too hard, and it's not worth it. His problems have included SEVERE stomach pains, lethargy, depression for which he's been medicated for years. I cannot understand it. I will say he does not make fun of my diet. I think it scares him though. It's a huge shift to go from where he is at right now to where I'm at.

[starrytrekchic]

I do agree with this, but I have to admit it makes me crazy to see my brother suffer much much more severely than I ever have and continue to eat gluten and wheat. He was told by a doctor a couple of years ago that he did not have celiacs so he just figured "Hey, gluten's not the problem." Since I've gone gluten free we've talked about it several times and he's at the point where he knows that's probably what his problem is, yet he thinks it would be too hard, and it's not worth it. His problems have included SEVERE stomach pains, lethargy, depression for which he's been medicated for years. I cannot understand it. I will say he does not make fun of my diet. I think it scares him though. It's a huge shift to go from where he is at right now to where I'm at.

It's definitely hard. I have three people in my family who need to be tested for celiac (mom with RA, sister with digestive problems and schizophrenia, grandmother with a history of major digestive problems longer than I've been alive) but they all refuse to go to doctors and they all think there could never be a problem with wheat--it's healthy! So I just go my own way with the hope that they'll see how much I'm improving in overall health. I've already given them as much info as I can without being a pain about it. Had to accept there's not really anything else I can do.

[srall]

It's definitely hard. I have three people in my family who need to be tested for celiac (mom with RA, sister with digestive problems and schizophrenia, grandmother with a history of major digestive problems longer than I've been alive) but they all refuse to go to doctors and they all think there could never be a problem with wheat--it's healthy! So I just go my own way with the hope that they'll see how much I'm improving in overall health. I've already given them as much info as I can without being a pain about it. Had to accept there's not really anything else I can do.

Agreed. My mom is also gluten free and her health is hugely improved, so he's got two good examples. He can decide for himself when it's time to cry "uncle." If he can see through his depression/brain fog.

[rdunbar]

Good thread

I agree; it's especially frustrating when it's a relative that is being disrespectful. after going through so much in this process of finding out what is going on with gluten and celiac, and then trying to learn and adjust to being gluten free, it would be nice to get some understanding and support from loved ones. When you get the opposite, it's downright painful.

I feel Ike you have to be careful to not buy into THIER perspective which is obv based on false assumptions, knee- jerk reactions , and the denial about thier own gluten addiction/ sensitivity probably plays a role in the interaction

by buying into it I mean I've caught myself thinking ridiculous things like "maybe I am a hypochondriac", then I realize that I hate and avoid doctors, and I kept quiet about many symptoms I've suffered from as a result of gluten, and also feeling as though the burden of proof lies on me which is just a reaction to the relatives doubting or oblivious tendancies

if they can't look into it for themselves when all the resources are available, and you've pointed it out ,then being pushy accomplishes nothing besides reinforce thier illusion that gluten free is a fad or a religion, instead of the only treatment for celiac, so it is essentially a strategy for your survival if you have celiac disease. It sure is frustrating when they just don't get it when it is so simple to understand.

for me only my mom is this way, everyone else has been understanding and supportive, at least with a good attitude, especially my step mother

my mother has told me some things that left me bewildered and very upset, like " if you just don't worry about what you eat, then you'll be able to eat anything, you put too much importance on what you eat, that's your problem.". And nonsense like that she used to have a sensitivity to gluten , but she somehow " healed" herself of it. It's especially frustating when you know that celiac or no, they would be better off without gluten, and you are helpless to make them want to face up to reality, and make the nessisary changes,

she has no idea how much is involved in living gluten free, and how much it can Impact your life and she has no interest. If she knew what a hassle it is then there would be zero chance. It's really sad. I was trying to explain what I have to go through every day to not put myself of risk, and she kind of argued that well, diabetics have to carry around insulin, it's just like that., it's no big deal ?!?

[Tidings]

Good thread

I agree; it's especially frustrating when it's a relative that is being disrespectful. after going through so much in this process of finding out what is going on with gluten and celiac, and then trying to learn and adjust to being gluten free, it would be nice to get some understanding and support from loved ones. When you get the opposite, it's downright painful.

I feel Ike you have to be careful to not buy into THIER perspective which is obv based on false assumptions, knee-jerk reactions, and the denial about thier own gluten addiction/ sensitivity probably plays a role in the interaction by buying into it I mean I've caught myself thinking ridiculous things like "maybe I am a hypochondriac", then I realize that I hate and avoid doctors, and I kept quiet about many symptoms I've suffered from as a result of gluten, and also feeling as though the burden of proof lies on me which is just a reaction to the relatives doubting...

my mother has told me some things that left me bewildered and very upset, like "if you just don't worry about what you eat, then you'll be able to eat anything, you put too much importance on what you eat, that's your problem."

Hey rdunbar,

Your relatives sound so much like MY relatives that maybe we are related! Haha...

To those who were confused about my initial post (which I thought was clear and felt others would readily grasp from their own firsthand experience with family's tendency toward denial about the reality of gluten intolerance and its painful side-effects):

The situation was that I was trying to ascertain more details from two siblings on two different occasions about family tendencies toward gluten intolerance and intestinal problems (see my earlier post about "intestinal cancers in family tree"). Instead of even trying to reflect on forebears' and other relatives' medical histories within the context of possible gluten problems, both siblings immediately threw up their "Denial Wall" and did the usual "You're just a hypochondriac" number. Like rdunbar said, it can almost make you doubt your own real-life experiences when you encounter this type of crass denial. As someone whose life has been severely compromised for going-on TWENTY-FIVE YEARS because of CFS and painful G.I. problems, I resent such self-centered denial and refusal to even hear me out.

To those who questioned whether I might be pressuring relatives about THEIR possible gluten intolerance, that's not the case. (If you knew these siblings, you'd know the foolhardiness of attempting to "enlighten" them about anything! haha) Was just trying to gather more background info to help me understand some of our family's medical history and how that helps to shape lives--because it does shape our lives, obviously, when we have chronic intestinal pain and dysfunction!--and also whether any of the elders' experiences would shed light on my situation.

What amazes me is that some people do not even see their relatives, especially elders, as PEOPLE with real-life challenges and personalities and life-stories. Maybe it's a case of being "too close to the trees to see the forest" or something? Maybe it takes a long time before you're able to see immediate relatives as "real people"--? I don't know. It just bugs me that people can share blood and DNA and grow up together with common experiences and background, and still not see the other persons as real-life, struggling humans. That's why I use the term "denial," because I can't grasp any other reason for such an oblivious attitude to real-life suffering--oh, there's also that other reason: self-absorbed narcissism! (Haha)

Thanks for listening to this "Ventilation Session"!

Have another, related post but will place it separately in this thread.

[Tidings]

Okay, here's another example of FAILURE TO VALIDATE a relative's suffering, which also prompted my original post in this thread.

My mother-in-law tends to pooh-pooh any health problems I'm having, which means she's pooh-poohing a LOT because, like most folks here, I have a LOT of chronic, ongoing health troubles, including CFS, high blood pressure, glaucoma, and gluten intolerance. Her approach is to send me newspaper clippings related to my "problems" but the news articles are always the type that claim that CFS and Gluten-free diets are nothing more than FADS or TRENDS and they are really a mask for hypochondria. You know the type of article.

In doing some filing this week, I happened upon another such article sent by my "helpful" mother-in-law, entitled 'GLUTEN-FREE DIET: TRENDY, BUT NEEDED?' It appeared in the Health section of the L.A. Times on July 7, 2008--fairly recent for an article that would still be questioning, in the face of real, hard evidence to the contrary, whether celiac disease and gluten intolerance are REAL!

The title of the "news" article gives away a certain bias ("trendy, but needed?") as does the final paragraph:

"...many acknowledge that what started as a quirky health kick may be out of hand. 'If you just Google the silly thing, there's all sorts of dieticians and medical professionals against it,' Badaracco says. 'They're just not organized yet to [band together and] say, 'You know what? This is ridiculous.'"

----

So: We have the following loaded vocabulary to DENY the reality of celiac disease and its pains and problems (and the NEED for a gluten-free diet):

*trendy

*needed?

*quirky

*health kick

*out of hand

*silly

*professionals against it

*ridiculous

No wonder we have doubting relatives, with "professionals" and "health media" pooh-poohing our suffering like that! Unfortunately (or fortunately, depending on how you view it), after two decades of encountering similar DENIAL about the realities of Chronic Fatigue Syndrome (CFS or CFIDS or its cousin Gulf War Syndrome), I'm hardened to such crass denial and determined to PLOW THROUGH IT to get the help needed. This forum is one such help, for which I (and many others) are very very grateful!

Thanks again for listening and sharing.

[srall]

I didn't mean to question at all how you were approaching your relatives. I was just agreeing with the point that living by example is about the only way to deal with this. Believe me I completely understand the pain of watching a loved one suffer from something that seems so "easy" to fix. My mom and I have both been on this journey together and we've just sort of agreed that unless we need to bring up our diet restrictions with somebody we just don't discuss it, if for no other reason than to avoid the doubters or people who would dismiss us as "fad" dieters.

And when it comes to doctors, at this point the only regular doc I have is my gyno, but if I decide to get a GI for this, I will call around until I find a doctor who has celiacs lest I get disregarded as some hypochondriac or crazy lady. Those articles that your mom is sending you (and believe me I've read them too) are just plain offensive. I'm so fortunate to have a mother completely on my side...even if it is just because she's suffering too.

[Tidings]

Hi srall,

Guess what's wrankling me is the "Gluten Intolerance" INTOLERANCE that some family members exhibit! (LOL) It probably speaks more to their fears than anything else when people feel compelled to DENY other people's lived experience.

Thank heavens for supportive forums like this one. :-)

[kayo]

living by example is about the only way to deal with this

I totally agree. The only responsibility and control we have is over our own lives.

I think you're right that it's their own fears that they are wrangling with. Perhaps fear of change. Concerned that what they view as daunting and limiting (gluten-free diet) will be forced upon them some how, some day. There's also the 'misery loves company' aspect to some family circles and sounds like your MIL falls in that camp. She's decided you're a hypochondriac and now she's finding articles to support her viewpoint. If only she'd put that energy into understanding and supporting your needs and not her own need to be right she'd be a happier person and you'd have a happier relationship. Ah well. Right? Just toss those suckers into the trash.

I'm very lucky in that my family has been incredibly supportive. My sister was just diagnosed celiac too. Support and validation is essential in making the transition and sticking to the diet. It's too bad some families don't see it that way.

[Stacy hated pancake Sunday]

My husband says that I am as bad as a reformed smoker that wants everyone else to quit. My husband also has a history of depression, has a beer gut without drinking beer, was told that he has 'soft teeth' and there was nothing they could do about the endless cavities, he is constantly in pain and what doesn't hurt is numb, constant constipation, constant stomach pain....he acknowledges that gluten-free has done wonders for me, but won't do it for himself...we also have 2 kids together where one is like a mini version of me on gluten and he feels that taking him off of gluten is a form of child abuse..ughhh.

I cook gluten-free at the house...but hubby travels a lot and my son manages to get gluten foods from his father, his grandmother and school.

I have been gluten-free since around Feb 2010...I started with a very basic diet of meat, eggs, yogurt,veggies and fruit...the gluten-free prepared foods make me sick. I rediscovered my rice cooker and rice cakes a few weeks ago and started feeling 'blah' not great, but not terribly bad either....last week I had a BAD reaction to a rice cake..my throat swelled, my sinuses went crazy...took some benadryl and my throat opened up... a lot..to the point where I realized that my throat had been swollen since about the time I started using my rice cooker.

My husband who witnessed a similar reaction to a Zatarain's rice mix long before I went gluten-free..is now telling me that I can't possibly have issues with both gluten AND rice...that I must want to be allergic to everything...and threw out the 'hypochondriac' accusation.....as if I wanted to lose my ability to breathe because rice cakes are just 'that good'...he said I could 'will' my throat to close up if truly 'believed' I was allergic to rice.

He's been picking fights lately(testing the waters of his mid-life crisis..Harley, biker friends, big pick-up truck, rather be with his friends on the weekends than spend time with the kids(6&8)) so I'm not so sure how much is disbelief, stubbornness or an attempt to get me to leave him.

[sandsurfgirl]

I am really direct with people about this disease. If someone tries to minimize it they get a medical lecture.

I do not get defensive or upset. I stay matter of fact and blow them away with the facts. You need to stand up for yourself by being strong and saying this is what celiac is. This is what it does.

If anyone in my life persisted (thankfully nobody has) they would start receiving handouts frequently and follow up calls to make sure they read them.

[loco-ladi]

I grew a thick skin.... i also got really good at telling my dr what i would and would not do (no he doesn't like it but since he is still taking my money guess he isn't that upset about it) I have gotten really good at exiting from social situations in a timely manner wihtout making my hostess feel guilty. I have figured out how to provide myself with an emergency meal at almost any location.

however the one thing that upsets me is #1 my cousin who is medically tested and definately postively without a doubt has it... eats hot dog rolls because they "calm her stomach down"

#2 even after showing my mother AND sister the statistics of this being hereditary and they have many of the same symptoms and medications the dr previously had me on... which i no longer need... still refuse to even concider the remote posibility they have the slightest chance of having it too.... GRRRRRRRRR