[debmidge]

My husband has celiac his sister, so far, does not.
Their mother is in hospice and they are discussing the funeral arrangements.
So she says she wants a "get together" at a restaurant after the funeral - a place we are not familar with. She tells me that it'll be a small gathering, etc. and as to my husband's diet, "we really don't have to worry about that." (meaning, he doesn't count - no need to include him or concern ourselves about a special meal for him).
I didn't argue with her because they are both besides themselves over their mother's death and I don't want to start a fight with her - my husband didn't hear her say what she said.
Behind the scenes I called the restaurant and they are familiar with gluten free, so not a problem. But this isn't the first time my husband's sister did not include him in family gathering.

[momxyz]

how frustrating this must be for you!

I have to confess that I used to have a reaction (internal, I kept my mouth shut) when my sister in law always brought special foods for her daughter to family gatherings. My neice was having physical problems that standard medical care was not addressing, and so, my sister in law began exploring food intolerances. I always thought "jeez, its just one night, can't you guys just eat what's being served?"

Obviously, I didn't get it. Call it bad karma, but five years later my own daughter is having problems, and I have this itchy rash that just didn't want to go away..... and through my own research I found the gluten connection. I have since had very good conversations with both my niece and my sister in law, about gluten intolerance.

So, reflecting on my own change of attitude... I was curious about what kind of communicatons have occurred between you or your husband, with his sister, about celiac disease and what it means for him? Your post implies some kind of communication, but I am wondering how complete it was? (Not being critical, just asking). And also, whether that communication came from you, or your husband. (I know in my own family, that if an in-law puts forth an issue that is not commonly accepted, it doesn't go as far...)

I agree, right now is not the time to push the matter, and thank goodness the restaurant will be safe for him. But perhaps after some time has past (and before the next family gathering) your husband could have a tactful but frank conversation with his sister?

[debmidge]

She knows his dietary gluten issues - this isn't news to her. She just refuses to
take the trouble to make accomodation for it. For instance, she announced that we're to have
this funeral luncheon and I expect to "chip" in for it, but of course, it's without concern for
my husband's gluten-free diet. We see her very, very often and she knows how sickly her
brother has been for years and how happy he was when he was finally correctly
diagnosed and how much better he looked after going on gluten-free diet. It's just difficult to
deal with family like this.

[momxyz]

so sorry to hear that, she is either a very selfish and callous person, or, somebody who really enjoys pushing other people's buttons.

Either way, after the dusts settles from this event, I would encourage your husband to calmly, matter of factly, but VERY firmly confront his sister. And just reiterate, one more time, that his dietary needs are NOT OPTIONAL. And that they need to be respected and considered at EVERY family event. Period. Not optional.

[Gemini]

momxyz, on Oct 5 2009, 11:09 AM, said:

so sorry to hear that, she is either a very selfish and callous person, or, somebody who really enjoys pushing other people's buttons.

Either way, after the dusts settles from this event, I would encourage your husband to calmly, matter of factly, but VERY firmly confront his sister. And just reiterate, one more time, that his dietary needs are NOT OPTIONAL. And that they need to be respected and considered at EVERY family event. Period. Not optional.

This is very good advice! I always find that the family members who co-operate the least are the ones who probably have it also and are in denial about it OR their life isn't as rosy as it may appear so they behave like this out of jealousy. My sister does this and contaminates my food on occasion or ridicules what I eat. She has also rolled her eyes at me for being so diligent with regards to CC. However, her life is a mess and full of frustration and disappointments and she's one of those who does nothing to make things better...only complains or won't talk at all. I also suspect she has celiac disease or, at least, GS and she adamantly refuses to see it.
It annoys the crap out of her that I have adjusted so well and easily to the gluten-free diet and why that should bother her, I have no clue.

There are only 2 answers to the above problem and if this good advice above does not work, then you may have to see much less of her in future. I have cut off family members for being disrespectful about Celiac to me and, although not my first choice, I can only control one thing....how often I subject myself to their BS.
The last people I thought would behave like this were family members......

[ang1e0251]

You know, the sister never got it before and she is not going to get it now. For whatever reason, but I understand your feelings. I get very upset when my DH's family doesn't treat him the way I feel he deserves. He, on the other hand, is very laid back about it and forgiving. It bothers me to no end. I guess I need to take a lesson from his hand book. I'm not so forgiving with my own family.

[momxyz]

ang1e0251, on Oct 5 2009, 03:41 PM, said:

You know, the sister never got it before and she is not going to get it now. For whatever reason, but I understand your feelings. I get very upset when my DH's family doesn't treat him the way I feel he deserves. He, on the other hand, is very laid back about it and forgiving. It bothers me to no end. I guess I need to take a lesson from his hand book. I'm not so forgiving with my own family.

She may never get it, I agree. But if he speaks up and clearly defines his expectations, then, she will at least know those expectations. Whether or not she feels they are valid is immaterial - but she can't say she hasn't been told.

Don't be hard on yourself for not being so forgiving with your family.... there's a time and place for everything.

[msmini14]

Gemini, on Oct 5 2009, 08:56 AM, said:

This is very good advice! I always find that the family members who co-operate the least are the ones who probably have it also and are in denial about it OR their life isn't as rosy as it may appear so they behave like this out of jealousy. My sister does this and contaminates my food on occasion or ridicules what I eat. She has also rolled her eyes at me for being so diligent with regards to CC. However, her life is a mess and full of frustration and disappointments and she's one of those who does nothing to make things better...only complains or won't talk at all. I also suspect she has celiac disease or, at least, GS and she adamantly refuses to see it.
It annoys the crap out of her that I have adjusted so well and easily to the gluten-free diet and why that should bother her, I have no clue.

There are only 2 answers to the above problem and if this good advice above does not work, then you may have to see much less of her in future. I have cut off family members for being disrespectful about Celiac to me and, although not my first choice, I can only control one thing....how often I subject myself to their BS.
The last people I thought would behave like this were family members......

I agree with your post Gemini, my family is the same way. My mom stopped including me about a month after I was diagnosed. Told me I was like cooking around someone with an infectious disease. I couldnt belive it when she had said that. She doesnt ever push me to eat gluten, but doesnt really care about it either.
I too refuse to be treated like that, so goes to say I dont really do to much with her. Well that was before I moved 9 hours away lol.

You can only explain yourself so many times, I really hope she comes around and is more sympathetic to her brothers needs.

[nasalady]

Unfortunately I can relate to this....my MIL has been very unsupportive of our needs. My entire immediate family (me, husband, two small kids) must avoid gluten.

She has been in denial ever since we went gluten free, constantly asking my husband if he was done yet with that "weird diet". He has tried to explain that he has to eat this way for the rest of his life, but that doesn't sit well with her.

She came over for a birthday party for our son, and complained about the gluten free food, even though it was just ordinary meatloaf (made with gluten free bread crumbs), mashed potatoes, salad, and Betty Crocker gluten free cake. She claimed that it upset her stomach and said "I'm just not used to eating that food". I asked her if she was allergic to rice, explaining that the only difference was rice flour instead of wheat flour.....she didn't respond.

She won't come over to eat at our house anymore, which upsets my husband. I'm OK with it though!

[Gemini]

msmini14, on Oct 5 2009, 10:15 PM, said:

I agree with your post Gemini, my family is the same way. My mom stopped including me about a month after I was diagnosed. Told me I was like cooking around someone with an infectious disease. I couldnt belive it when she had said that. She doesnt ever push me to eat gluten, but doesnt really care about it either.
I too refuse to be treated like that, so goes to say I dont really do to much with her. Well that was before I moved 9 hours away lol.

You can only explain yourself so many times, I really hope she comes around and is more sympathetic to her brothers needs.

It is about the most infuriating and hurtful thing to have a woman's own mother be so jerky with regards to a diagnosis of Celiac Disease. I know why my mother is the way she is...she also has it and gets absolutely livid if I infer that she does. She was diagnosed with IBS, of course, and when I got my diagnosis, I was all excited to have found an answer, finally! I mean, really excited and not the least bit bummed about the diet at all. Coming close to not making it has a tendency to do that to a person.

I called her on the phone and was so excited to share the news of finding out the root cause to a health issue which plagues half of my family. Yup, half of them! My mother's family is huge. Halfway through my conversation, right about the time I told her it was the answer to her IBS, osteoporosis, acid reflux, (need I go on?), she did it.....she HUNG UP on me! To this day she refers to it as that disease my daughter has and not the problem that so many of my relatives suffer from. Only one of my huge family bothered to get tested and the rest now ignore me. I shouldn't have expected anything less because there is alcoholism and substance abuse in my family so denial is another common problem with all of them. It was still a huge shock to see how very, very deep denial goes.

So...these days I rarely see my family because they will never ask if there is anything they can provide when I visit...if I don't bring a cooler filled with food, I don't eat and they don't care. Once I brought a bunch of gluten-free breads and muffins for breakfast and they were promptly eaten by some family members who claimed they didn't know they were for me. Very passive/aggressive BS and I finally have had enough. It also is interesting that none of them ever ask me why I don't come to things anymore but I know why...they will have to hear what they don't want to hear, that they are hopelessly dysfunctional and living with their heads in the sand. Who wants to be around that?

[cyberprof]

Gemini, on Oct 6 2009, 01:59 PM, said:

It is about the most infuriating and hurtful thing to have a woman's own mother be so jerky with regards to a diagnosis of Celiac Disease. I know why my mother is the way she is...she also has it and gets absolutely livid if I infer that she does. She was diagnosed with IBS, of course, and when I got my diagnosis, I was all excited to have found an answer, finally! I mean, really excited and not the least bit bummed about the diet at all. Coming close to not making it has a tendency to do that to a person.

I called her on the phone and was so excited to share the news of finding out the root cause to a health issue which plagues half of my family. Yup, half of them! My mother's family is huge. Halfway through my conversation, right about the time I told her it was the answer to her IBS, osteoporosis, acid reflux, (need I go on?), she did it.....she HUNG UP on me! To this day she refers to it as that disease my daughter has and not the problem that so many of my relatives suffer from. Only one of my huge family bothered to get tested and the rest now ignore me. I shouldn't have expected anything less because there is alcoholism and substance abuse in my family so denial is another common problem with all of them. It was still a huge shock to see how very, very deep denial goes.

So...these days I rarely see my family because they will never ask if there is anything they can provide when I visit...if I don't bring a cooler filled with food, I don't eat and they don't care. Once I brought a bunch of gluten-free breads and muffins for breakfast and they were promptly eaten by some family members who claimed they didn't know they were for me. Very passive/aggressive BS and I finally have had enough. It also is interesting that none of them ever ask me why I don't come to things anymore but I know why...they will have to hear what they don't want to hear, that they are hopelessly dysfunctional and living with their heads in the sand. Who wants to be around that?

Gemini, I've been curious before about the addiction, alcohol connection. I know, speaking for myself only, that I was addicted to gluten pre-diagnosis. I used to say I could eat pizza or pasta daily. I wonder how many celiacs are addicted not just to the booze but the wheat/rye/barley in beer and other alcohol...

Have there have been any studies about alcoholism in the celiac population? Anyone ever been curious?

[jerseyangel]

Deb--I'm so sorry your sister in law is still acting dismissive of your husband's disease. I feel so badly for him. It's incredibly hurtful when it's a family member who treats you this way.

I also want to say that I'm sorry about your mother in law. You and your husband are in my thoughts.

Gemini, on Oct 6 2009, 01:59 PM, said:

It is about the most infuriating and hurtful thing to have a woman's own mother be so jerky with regards to a diagnosis of Celiac Disease. I know why my mother is the way she is...she also has it and gets absolutely livid if I infer that she does. She was diagnosed with IBS, of course, and when I got my diagnosis, I was all excited to have found an answer, finally! I mean, really excited and not the least bit bummed about the diet at all. Coming close to not making it has a tendency to do that to a person.

I called her on the phone and was so excited to share the news of finding out the root cause to a health issue which plagues half of my family. Yup, half of them! My mother's family is huge. Halfway through my conversation, right about the time I told her it was the answer to her IBS, osteoporosis, acid reflux, (need I go on?), she did it.....she HUNG UP on me!

Good Lord Gemini, I could have written this myself! Instead of hanging up on me, my mom just either doesn't say anything, or completely dismisses the whole thing and acts like she could care less that her own daughter has to deal with a chronic disease. It's all very passive-agressive--and on a certain level I handle it ok and have severely limited my conversations with her (we live 1500 miles apart) but deep down it's hurtful. I just don't understand it......

She has so many symptoms herself--that could be part of it.

[nasalady]

cyberprof, on Oct 7 2009, 01:18 PM, said:

Gemini, I've been curious before about the addiction, alcohol connection. I know, speaking for myself only, that I was addicted to gluten pre-diagnosis. I used to say I could eat pizza or pasta daily. I wonder how many celiacs are addicted not just to the booze but the wheat/rye/barley in beer and other alcohol...

Have there have been any studies about alcoholism in the celiac population? Anyone ever been curious?

This is really interesting! The autoimmune diseases in my family come from my father's side. He was an alcoholic, and he had RA....he may well have had celiac too but we'll never know. We do know that celiac disease runs in the family, though.

His father was an alcoholic too. I've often thought of alcoholism as the family curse....but now I wonder.

All of these horrible, painful conditions (lupus, RA, fibromyalgia, celiac, etc., etc.) that run in our family....did the pain cause my father and my father's father (and so on back to the dawn of time) to try to self-medicate with alcohol? Many of the AI diseases were not really characterized....not even vaguely understood, until late 20th century.

Maybe AI diseases and the associated pain are the real family curse.

Any thoughts? Or should we start a new thread?? I don't want to hijack this one.

[txplowgirl]

You know Nasalady, yes, that is very interesting indeed. My father was an alcoholic also. As far back as I can remember he always had stomach problems especially after eating, big D big time. Several other family members are alcoholics. He passed away in 01 of colon cancer. I am also thinking of my mother's side of the family who were alcoholics and passed a way with cancer.
Both sides of my family have alcoholism, cancer, RA, thyroid problems, lupus.
I worry about my son because my ex husband's side of the family also. Alcoholism runs rampant on that side as well. His mother died of ovarian cancer and 1 sister died of brain cancer that spread throughout and another sister who died of esophageal and lung cancer. The 2 sisters died just 2 years apart. My ex husband's mother's father died of stomach cancer. They all had stomach problems.
He's just 26 and of course when I point all this out to him he just shrugs it off and eats the way he wants. Tells me "if it happens it happens, I'm not gonna worry myself sick over it" AARRRRRhhh.
Anyway, interesting conection between alcoholism and gluten I think.

[msmini14]

I find this interesting too. I know my dad had celiac, I just wish I knew about this disease before he passed away. He was a big time alcoholic, so was his dad and mom. My half brothers and sister had problems with addiction also, some still do. Which none of them will get tested or even imagine going gluten free.