Dealing With Other People's Reactions?

[dana-g]

Deanna, I like your "two cents", and I think it's great that we're discussing co-dependency here. Being dx'd with celiac disease is a huge emotional upheaval for a lot of us; likewise the years leading up to it have often been an emotional roller coaster. I know my illness affected my marriage and my relationship with my children. I think it's fantastic to be able to talk to one another like this--I don't have any other group of people in my life who can relate so well to the feelings I have regarding celiac disease. I am really getting a lot out of this discussion, and I thank everyone for sharing .

[Niteyx13]

Thank you Dana. I just don't want to appear like a know-it-all. I only know a lot about a lot of stuff, because I am a walking issue... lol...

But, seriously, I like to help other people, and this board has helped me soooo much that I just want to give back. So, when I saw "co-dependency" I kinda got excited. Thank you all for being here.

Deanna

[doglover]

thanks, zippyten.

that's exactly what i was thinking, too.

people's reactions to your problems (gluten-free or anthing else in life) can really show their true colors.

the bad thing about celiac is that i think most people have never heard of it. sometimes i feel like people feel like i'm making it up! i learned something recently from a friend with a small child. she said that if she doesn't act too shocked/upset about little things that happen (spilled milk for example), her son is so much less upset about little stuff. i apply this more in my own life now and it helps. if i act like the celiac is no big deal, just another small annoying thing i have to deal with and laugh about it, others don't make such a fuss either.

[celiac3270]

I agree on all fronts. I am a very sensitive person who had to learn to desensitize very quickly when I went to college. Usually a with a comment like that, had I been feeling the way I felt before March, I would have carefully told the person, "It can suck, but it's all about your point of view. Either you give up when you find out you're diagnosed, or you persevere, trying to find the best tasting and healthiest food out there. I understand it's hard to imagine, but please respect my situation in the same manner I respect yours." Look at this way: Celiacs aren't a cult who think anyone who eats gluten doesn't fit in or is a monster.

Very true..........that's actually a very good way to put it --- I'll have to remember that one .

debmidge--

Is your friend married? It seems that she has confused your dedication to loving and caring for your husband in sickness and in health. Now I may be very young and very much unmarried, but I've seen two great examples to draw from--Ronald and Nancy Reagan and my grandparents.

Our nation watched as Nancy relentlessly stood by the President's side, in sickness and in health. Their children even accused them as spending more time with together than with anyone else. She loved him till the bitter end--until he didn't recognize her face, their children's faces, or his own endless list of accomplishments.

I hope to God your friend didn't call her co-dependent.

A powerful and very true statement....well put, once again

[Guest ~wAvE WeT sAnD~]

Thank you--sometimes my Philosophical persona kicks in, and I was amazed at what Debbie's friend had said (I almost cried), yet proud of her.

:)

gluten-free people unite!!!

[stef-the-kicking-cuty]

Hi Anna,

1. it also bothers me, when things like this happen. My advice, since some people are so ignorant, you are not dependent on their friendship, since they haven't been real friends (just coworkers of your friend for example) in the first place and mostly don't understand anyhow. Consequently just tell them what you thought and be mean yourself.

[debmidge]

Hi all

I knew I had to do this for a while...so I visited a psychologist to discuss this whole coping issue, as the care taker. My husband isn't doing very well since going gluten-free since Oct 03. He still can't gain weight and still has upset intestine incidents, even though I know he's eating gluten-free. I have made all of the precautions and buy from gluten-free websites and health food stores and his food is as plain as it could be.

But back to my visit. I spoke with pyschologist and told her I was bothered about the co dependent label. I explained how we live what's going on, etc. And her response to me was that it isn't codependence in this case, but a healthy

"interdependence" which can wax and wane in every relationship depending on what's going on at the time. It made me feel better to have my feelings confirmed.

My other dilemma is that my friend discussed celiac with someone else who has it (that she met) and told me that there are many message boards about it. I wanted to bring her to this one when she visits me next time, but I then realized that I made those posts and she'll know right away I am speaking about her. So I had to drop that idea. My biggest fear now is that she'll find this board on her own......If she does...then I hope she realizes that I was that distressed about the codependence thing.

Anyway, the pyschologist and I meet once a week and she's familar with celiac as she used to be an R.N. and one of her psychology specialities is chronic illness so I think she'll be able to help me to keep feeling that there's some hope out there.

[judy04]

Hi,

I don't know if this is the right forum, I just have to vent!!!

This morning I received a phone call from my MD's nurse

that the report came back on my blood work with an elevated

blood sugar 227 and elevated triglycerides and sed rate.

My brother and his wife are here visiting, my brother is looking really

bad, has had 3 heart attacks and has trouble breathing on exertion,

I am really worried about him. Anyway I was telling my family about

the gluten sensitivity and now the other problems when my sister-in-law

came out with a most inappropriate remark that she was glad she was

healthy because my brother and I have all the sickness in the family

and laughed. I was sooo mad, I wanted to reach across the table and

smack her, but I bit my tongue and said that you just have to play

the cards your dealt and let it go at that. I'm so glad I don't have to live near her

and only see her once or twice a year. Why are people so ignorant?

If I were her I would get down on my knees and thank the Lord every

day for her good luck. I get so depressed and feeling sorry for both my

brother and me. I think he should also get tested for celiac disease because he has

many of the symptoms but he said he is 70 years old and too old and

sick to change. Thanks for listening, I'm feeling better now.

[sunflower]

What your sister-in-law did, is very much like noticing a disabled person in a wheelchair in the street and then running and jumping around the wheelchair and laughing in that person's face saying "OH, I'm so happy! *I* can run and jump! Oh, lucky me!" (not that I ever saw anything like this happen, I was looking for some comparison and came up with this one, which is maybe a bit exagerrated, but not much, I think).

No one is guilty of being ill, or disabled, or anything like that. If they could choose, they would surely choose to be healthy. I think many people, when they see someone who is less healthy then they are, may think: "Oh, I'm lucky - I could have ended up with something like that", but it's a very selfish thought, and to say it aloud laughing is lower than low!

[rattaway]

I have had similar experiences with my family. My youngest daughter is tiny, she has always had slightly dark circles under her eyes ( I do too though). My mom and brother were convinced that the reason my daughters weren't fat is because we didn't give them gluten. They were also convinced that the reason that my daughters are allergic to gluten is because we never give it to them. Hellloooo... how do they think we know that they are allergic? Because we gave some to them. In the beginning of our Celiac journey, they used to make sure that when they were eating donuts, pizza ect., they would sit right next to me or my kids and it was in a look at what I get to eat sort of way. Arggggg. I just found that to be a good opportunity to leave. My grandmother said something similar to what your sister in law said yesterday, she was like" I guess I inherited the good genes in the family". I am sorry, but since when do type 2 diabetics who can't control their urine, have spastic colon,and have mood swings like Linda Blair in Exorcist, make up the "good genes" in the family? I have half the doctor bills my mom, sis, and grandmother have. I just wish that people, especially family would have more compassion. By the way, the pediatrician says that my 3 ft. tall four yr. old is exactly porportionate for her weight of 28 1/2 lbs. So there. I feel better now. Thanks for letting me vent here.

[sunflower]

I liked your comment about the good genes!

Once I said, jokingly, to my boyfriend (who is not Celiac), that considering the future possibility of having children, maybe he should have chosen a woman with a better set of genes than mine. To which he answered that if he thought that way, he'd have to shoot himself first, because his own genes are not perfect either I wish there would be more people who have a similar approach to people as he does...

Comments like the one your grandmother said just beg for an answer "Why do you see the straw in your brother's eye...?"

[rattaway]

Yup. She has a big ol plank in hers huh? I am also shocked at how some celiacs treat other celiacs at times. It seems that some are ashamed of it when others want to share it so that other people get more educated about this disease.

" Better a dry (gluten-free) crust with peace and quiet than a house full of feasting, with strife" Proverbs 17:1

Rian

[sunflower]

I am also shocked at how some celiacs treat other celiacs at times.  It seems that some are ashamed of it when others want to share it so that other people get more educated about this disease.

???

Can you give some example? This is beyond my imagination, as the only other Celiac I have a chance to meet is my sister - no other people with celiac disease among my relatives or friends.

[rattaway]

Sure, just ckeck under keyword cupcakes and you will see that a new celiac was telling me that I shouldn't take gluten-free cupcakes to my daughters class because some gluten eating kids might not like them and make her feel embarrassed. I told her that I feel the more that celiacs keep celiac a closet disease the more doctors will continue do misdiagnose it and that with using the classroom as a chance to educate people on celiac that we can bring to light celiac disease. I believe it is under gluten-free birthday cake topic. Rian

[lovegrov]

debmidge,

Has your doctor ever mentioned possible bacterial overgrowth in your husband? If not, this is something worth considering. Symptoms are like celiac. According to one expert (Dr. Cynthia Rudert), a large percentage of people diagnosed with refractory sprue actually have overgrowth.

If this hasn't been explored, all you need to do is have him start taking a probiotic (Culturelle is one that's recommended -- Rudert puts ALL of her new patients on probiotics without even looking for overgrowth). If he gets better, you've found the problem. If he doesn't, you've done no harm.

richard

[debmidge]

Hi

We will look into bacterial overgrowth... he tried the pro biotics (acidopholis) for a while, and they gave him the most unbearable (smell) gas.

We are pursuing other areas like food sensitivities.

celiac3270: I liked your response and kept forgetting to thank you for it. You have a profound sense of what is right.

[Niteyx13]

Rian,

That is such an unfair thing for someone to say to you; and for your daughter, about taking cupcakes to school. Just because she has celiac doesn't mean she shouldn't not be able to do the things other kids do. If the kids don't like them then they don't have to eat them. Some kids probably won't even notice a difference. I agree with you about people needing to be made aware too.

Deanna

[SofiEmiMom]

I have a "dealing with other people" vent...this has been bothering me ever since it happened and I guess I just needed to share to get it off my chest once and for all...i love this board!

It was just three weeks after I had found out myself and my two children are gluten intolerant - an overwhelming time for me, as most here can relate. My world was spinning around me trying to get organized. My husband and I were at his cousin's wedding (big Italian wedding) and as I kept declining the multiple pasta dishes being passed around the table, the man to the right of me (a friend of my husband's family) says, "What, you don't eat pasta? Well, that's going to cause problems in your marriage. You're married to an Italian." Then 10 seconds later my Mother in law, who unfortunately is not a nice person whatsoever, yells across the round table of 10, "Is this genetic?" I nodded yes. "Oh that's just great!" she responded while rolling her eyes. Then after everyone else had recieved their entree (a breaded cordon blue) and the waiter was trying to understand that I had requested a plain chicken breast and vegetables my brother-in-law says, "Oh there goes Kim again, being difficult." That was all I could take. I slowly got up and went to the bathroom. I stood in the stall and started sobbing. Then to top it off I had eaten something from the appetizer table (not something I would attempt now that I'm more educated) that was contaminated and starting having profuse diarrhea. I was crying and sitting on the comode in my nice evening gown. I laugh about it now. But it just hurts thinking about how inconsiderate my husband's family is. His family says that "I'm too sensitive." My father in law had colon cancer, can you imagine if I had said after his surgery in a room full of people, "Is that genetic" which of course it is, "Oh that's just great." I would be called the witch of the universe. I've been blown away by the reactions of certain people - like I'm on the South Beach Diet or something and it's a choice. Sigh. Thanks for the vent - I needed it

[rattaway]

Oh Bless your heart. . I am so sorry that you had that kind of reaction. I wish we could print up Celiac tracts to pass out or something to make people aware of what we go through and how hard things like weddings can be. If people, yes that includes family members would learn to treat celiac like the disease that it is instead of a "diet", then we, as well as our celiac children would be spared so much hurt. Hey, Celiac.com people, are you listening to the part about tracts? I think there should be some placed in every doctors office, dentist office, beauty salon, school, ect. Maybe someday.... But for now, vent away! we all need to at times. Thanks for the support about the cupcakes Deanna.

Rian

[Guest ~wAvE WeT sAnD~]

Deanna,

I'm Italian....so that was the first thing I thought of when my GI's head nurse confirmed my diagnosis: what now? I hope your In-Laws have the opportunity to learn more about celiac disease, if not through you, but through a mutual friend, perhaps (read my "Endoscopy Results" post if you'd like to hear my "commonality" schpiel [sp?] unabridged).

Good luck with the In-Laws---my father's really give him hell like it's nobody's business...but that's another story.

Take care,

[debmidge]

The Celiac Sprue Assn (www.csaceliacs.org) sells a tract for .50 each. A little pricey for handing out....I do purchase them to leave them in waiting rooms and other places but I hand them out selectively. I wrote my own one page overview of it and I keep copies in my car. I was approached by some Girl Scouts selling cookies and declined to buy a box (I really felt bad about it) but then I gave the mother of one of the girls my hand out to explain why I didn't want to purchase. The mother wasn't aware of what celiac was.

I'd like to be able to buy a one page professionally done hand out like Rattaway suggests. I feel the CSA's price per copy (and there is no price break when you buy a large amount) is too high and if you read it, it's written on a technical level which may be a little boring for the average non celiac. Even the cover is boring - it looks like a medical booklet. To add insult to injury, it's also copyrighted and can't be photocopied to distribute (that's why I wrote my own) -- so there's no incentive to share their information in an inexpensive manner.

[debmidge]

Sofi

Your in laws are a problem.....I know how Italian families are (I am one) and they like you to have Sunday macaroni with them. Perhaps your husband can tell them positive things about how in Italy a lot of people have celiac and that their medical system screens people better than in USA. I also had the experience of speaking to a fellow who runs a fish restaurant here in NJ and we discussed gluten free food and he looked at me and said "So that's what was on the menu!" I looked puzzled and he explained that when he visited his father's homeland he was in a restaurant which had - in Italian - a gluten free menu. He didn't know what they were talking about. So I had provided him with the piece of the puzzle by telling him about celiac and gluten-free food. So maybe if your in laws think that their homeland is somehow ahead of the USA with regard to celiac/gluten-free they'll be more compassionate.

As an aside, my husband has celiac and he's newly diagnosed. His own sister keeps telling me that his symptoms are in his head. So sometimes you just can't get even close relatives to be compassionate. You are either compassionate or not - you can't train people to be that way.

[rattaway]

Hi Sofi. Next time your sis in law has a killer headache, just smile and say"It's all in your head"

Rian

[SofiEmiMom]

Thank you everyone for your kind support. My in-law situation is not ideal, that's for sure. I've tried to educate them and brought up information about the prevelance of Celiac in Italy. When my Mother-in-law finally stopped making negative comments was when I told her that her son (my husband) tested positive for gluten intolerance (through Enterolab). She hasn't said much since and has been trying to come up with some gluten free cookie recipes - which is nice. The unfortunate thing is that my husband is in complete denial. He eats gluten free when he's home since I can't bring myself to give him otherwise knowing what I know. He travels a lot for his job though and eats out a lot and does not maintain a gluten free diet. He has some major symptoms too - diarrhea, bloated belly, a severe skin rash on his head that has been deemed 'life long/chronic" by a dermatologist, and grumpy, grumpy, grumpy - a lot. But of course he is in complete denial and refuses to believe it. Which makes me worried and sad if I dwell on it. All I can do is pray, I realize. Anyway, that's another topic.

I have one of my all time "dealing with other's reactions" experience to share:

Last month my husband and I were out to eat with a group of people. I had called ahead of time and spoke with the chef. Everything went wonderfully until dessert time. Someone ordered the dessert sampler where the entire table samples 4-5 desserts. I've come a long way where it really doesn't bother me to watch other people endulge. What bothered me was this: the waitress, who was aware of my 'special requests' but as usual didn't understand, says to me as she is holding the 'death my chocolate super fudge brownie cake supreme', "I'll just set this over here out of your reach as you must be DYING inside because you can't have any." It was loud in the restaurant and no else heard, but my husband said "What's the matter" because the look of astonishment on my face was apparent. I was so taken aback that I couldn't even respond. Can you believe it? After I recovered I just shook my head and laughed at her ignorance. I'm just always left to wonder, "Would she have said that to a diabetic?" Ignorance can result in such cruelty to those of us on the receiving end. I realize that we just have to continue to band together, gather additional strength, and educate the people - albeit a challenge

[rattaway]

Yet another reason why we need tracts that are informative and cheap to hand out to ignorant, illmannered, people who have no idea that this really is a disease. I really need a punching bag at times to get out my frustrations. Or I will take a jerk of a waitress if that is my choice. Like smokers, your husband has to be the one to make the call on how he feels and what he is willing to do to get better. I know you know that though.

Hang in there. Rian