Insensitive Family Members

[DawnS]

If one more person says "but you look great, you have lost so much weight, don't you feel lucky that you have a disease that makes you LOOSE weight?" I might actually hit someone.

I have wanted to respond: "yeah, its great to have to go to the bathroom 6-8 times a day, and feeling like someone is punching my abdomen repeatedly after I eat. Its AWESOME to know that I am eating tons but loosing weight (and hair) cause my body is damaged and malnourished. Do you want to start this "diet plan"? I can shove my fist up under your ribs and you can see what it feels like."

I usually try to tone it down a bit, but it makes me so angry that I usually turn red... to which someone says "you don't look sick, you always have color in your face."

One of my favorites is "but how much could possibly be in this little tiny cookie?" or something like that. Well meaning, loving people who just don't get it!

[little d]

My mom she just wants me to be healthy, she wants me to keep an open mind that I just might have a gallbladder issue instead of gluten issue. She had gallstones when I was very young it was almost gangreen, and almost died, my Grandma had her gallbladder removed so she thinks and she might be right because all mothers are right, right! I respond well to the diet, yes when I eat anything fried I do have pain I guess in places that you normally do when you have gallbladder issues but it is only when I have greassy fried, foods so I stay away from those foods regardless even before I found out about gluten. So she is a little insensitive about my diet, my brother thinks that i'm on some fad diet, because my sister started it first. My sister now is confused she is the one who brought Gluten intolerance to my attention because she was having the same symptoms but with more food intolerance and allergies, her VA doc basically told her to get a life that it was all in her head, she has been eating gluten and I can tell she looks horrible and she is slowly gaining all her weight back that she lost with eating gluten-free. So I am keeping and open mind to having a gallbladder issue on top of my possiblity to having Celiacs even if it is not diagnosed, when I can get the money together I will be ordering from Enterolab.

donna

[little d]

One of my favorites is "but how much could possibly be in this little tiny cookie?" or something like that. Well meaning, loving people who just don't get it!

Enough to go poo a million times and getting raw from wiping

donna

[sickchick]

WOW My heart goes out to everyone who has to deal with this nightmare.

I have been dealing with allergic reactions for 11 years now and I have been misdiagnosed over and over again until over the last couple years when my body really started getting worse. I was in college and I was a very stressed out little girl and I had just had 3 really bad car accidents and I was having major abdominal pains and then I started reacting to everything I ate. And I thought I was going crazy!

My face would flush and then I would spin and it was just aweful! I even went to the best Naturopathic clinic here in Seattle and they haven't diagnosed me yet! My grandmother who was an ER nurse for 45 years was the one who said "you're allergic to wheat" I thought no way could it be something that simple cause of all the oddball things that was happening to my body. But she was RIGHT! HAHA

That was a few months ago.

So being hellbent and stubborn, I started to read about wheat allergies, and bought this magazine at the health food store and it had an article about Celiac Disease. I read it literally because I was bored and I swear to you I have every single symptom of Celiac right down to the weepy eyes and skin rashes. Muscle aches, deep, diahrrea, constipation, bruising easily, fatigue, super dizzy, my fingers and toes go numb and tingle... could it be more obvious? I even went to my ND and showed her my itchy goopy skin rash (mine happens to be on my chest) and she "scraped" it and looked under a mic and said it was nothing... grr

So over the course of the last 11 years of my life, I lost all of my friends but 2, have a semi-supportive family. I've been ousted by my Sister, my mom was supportive at first, but thought that kicking me out of her house would "snap me into reality" and make me have to get a job and take care of myself. I was not welcome back with her (and I am not a bad person, I've never been into drugs and I went to college) I am a capricorn I love to work! haha but there were times when I was so sick I could not cook for myself and I had to pay my best friend to microwave me some veggies. lol But I had an eye-opening and very emotional conversation with my mother and she is helping me now while I get better.

Needless to say I have so much to learn about Celiac and I have an appointment on the 30th to see what I need to do about being tested and having a biopsy. I am tempted to bring in that magazine and smack my dr upside the head with it hehehe I've been too sick for too long. I feel like my life ended when I was 24.

And thank god I found this place!

Good luck in all your journeys...

sickchick

[geokozmo]

I can identify. It is not easy. Most people et frightened in sight of any alternative lifestyle. After all most of the lonmg history of ghettos and pogroms etc were basically about a different style of cooking (kosher meant to be on a certain diet although only mystical-symbolic.) I even found people who definitely have symptoms that would disappear if they ate glutenfree and they choose not to start the diet just because a change in lifestyle means danger somehow. I was told about the dangers of wheat 6 ys ago and I only start the diet now. And I feel the difference but I thought it was just a fad for years. Sorry. We all do mistakes. Too bad. But life is black-and white, it cannot just be grey.

Geo

[Lori Park]

I was diagnosed with celiac 8 months ago and it was a long process. I'm feeling the exact same way the rest of you celiacs are. My 2 best friends have both made the same comment..."it's a good thing it isn't me, because I eat what I want. I would just have to be sick." It drives me crazy, because apparently they have no idea how sick I was. I'm feeling better now and there is no way I would want to go back to being that sick over food again!! I find it's best to just not mention it.

[dizzygrinch]

Hi Lori, I havent been diagnosed yet, but I understand what your saying. Im thankfully blessed that my family is very supportive of me, especially my husband. He cant stand to see me sick. I do have a friend, that comes into town every now and again, and always tries to offer me everything I cant eat, then looks at me like Im just rude. Oh well, I just figure, when he is dying on the toilet, he will know what we go through! I am just at the point now, that food is my enemy. I try to eat what I can, without being sick all the time. Anyway, just wanted to let you know, I feel your pain!

[VioletBlue]

I think sometimes people say the rude things they say as some kind of defense mechanism. I think some part of them fears being in any way like someone with Celiacs. They fear having to follow a restrictive diet or not being able to eat their favorite foods or enjoy social get togethers. By pushing away someone with Celiacs or belittling their problems they're trying to insulate themselves from their own fears. In other words, if your Aunt can convince Alex that eating gluten filled foods is okay and gluten isn't really a problem, then she doesn't have to fear winding up like Alex someday. She's trying to convince herself on some level as much as Alex that it's not really a problem.

And if that's the case, there's no much you can say to someone like that. Until they realize why they're doing what they're doing and or their actions cause serious repercussions in their lives, it's always going to be there to some degree. And who knows, if Celiacs does indeed run in families, maybe the Aunt's been told by a doctor she has a problem, or maybe she realizes there's a chance she might have a problem with gluten too and she's trying to live in the state of denial.

[Mtndog]

I haven't read the whole thread, but the BEST revengE is to bring your own food and make it look better than theirs REALLY!

My first holiday season gluten-free, I brought Namaste Blondies with choc chips to the Christmas Eve party- they were the first things gone from the table and I had several people hunt me down and askme what they were.

Thanksgiving is coming- lots of people here bring their own cornish game hen or roasted turkey breast with them to be safe. MAKE THEM DROOL!

[minton]

I know that before diagnosis all of my family, even the extended family, hated seeing me at get togethers. I was the sickling and my mother's favorite quote was "if I had known you would be this way, I wouldn't have given birth to you." I was the sickling, the hypochondriac, the liar, and the outcast. When a new dentist refferred me to the doctor who later diagnosed me, my mother was shocked...when the dentist explained that my teeth indicate I need an endocrinologists help ASAP, my mom went white. A week later, after I was diagnosed by the endocrinologist and leaving his office, my mother actyually apologixed to me for the 17 years of hell she gave me. It took her almost a year to break her own habit of hating her sickling kid but once she stopped and started defending me, the rest of the family backed off too. Maybe you should invite the aunt to visit the next time Alex is glutened. It would probably wake her up to the "I'm not joking" part of celiac.

Another personal story that seems cruel and rude but is a good thing to point out... a few months after dignosis we went to my grandmas. Mom and I helped her cook so it would be safe but I still got glutened...traditional family recipes *rolls eyes*... I was so sick after that meal she went to the library and studied up then cooked a whole Thanksgiving meal the next day on her own...completely gluten-free! Sometimes a little slip in a meal that an "insensitive" or "careless" relative makes, could wake them up. My dad did this same accident once too, but thankfully my mom stopped me from eating the food and then educated him to alternative ideas. It did make a huge difference.

The other idea would be to get her a nice informative book on celiac for a gift. When my nephew started getting sickly a year after birth, we sent him my copy of a celiac book. My brother had him checked and it's not celiac, but they found it helpful nonetheless and have made every effort when I visit to make meals I can eat based on the book!

Sometimes though, you do have to be stern and sometimes seem rude to protect yourself. The way I look at it is...it's MY health and i remember the bad times...if I don't want that sickness back I gotta stand up for myself. I try to be nice and helpful but if it doesn't sink in, you gotta do what you gotta do to protect your health. I'm glad she has someone like you to defend her...I'm still educating my own fiance but he's getting there.