[elspeth]

ok, i have a feeling i may get bashed for this, but here goes:
my husband's sister "lucy" was diagnosed with celiac disease about 5 years ago and we (and the rest of the family)have tried to be as supportive as possible. i am a chef, and have made glutenfree dishes &desserts for her when she has come over for dinner or at a family function. whenever we go out to dinner with her & her husband i always look at the menu online to see if there is something she can eat. the problem is that she seems to become enraged over the smallest thing: if the waitress sets the bread basket in front of her at the table, lucy snaps at her: "i said i am allergic to wheat!" and then she makes a big show of moving the basket somewhere else.
she spends alot of time talking about how wheat is so bad, regardless of the fact that the rest of the table may be eating wheat. i think that is insulting - i am a vegetarian, but i don't pontificate about the evils of meat, especially when others are trying to enjoy their meals. i have gone out to steakhouses and ordered salad, just to be with my friends, rather than sit home alone or make everyone feel uncomfortable. i just eat before i go and have a salad or a glass of wine.
the other thing "lucy" does is she talks alot about her bowel movements, diarrhea, etc. while we're eating. i'm sorry, but i find that really gross, regardless of who is talking. my husband and i don't really know what to say to her, because if you even hint that she may be overreacting she flies off the handle and screams: "nobody understands what i'm going through!" yes, she has literally done that...in public.
i feel like she is angry because she can't eat wheat and is taking it out on everyone else. i know alot of people on the board talk about insensitive family members (which sucks,and i'm sorry for you guys) but what about when it is the celiac person who is insensitive to those who are trying their best to accomodate her diet? i feel bad because i like lucy alot, but all she talks about is her health and her diet these days. the rest of the family is getting fed up with her rude behavior, and i feel like there is going to be a blow-up soon...does anyone have any advice?

[sbj]

"Can't we all just get along?"

Moderation in all things is great advice. I'd like family members to be more sensitive and I don't feel that those who suffer with special conditions should get angered when the world doesn't stop just for them.

No one should have to listen to a discussion of bowel movements during a meal - that is simply common courtesy whether or not you suffer with some disease.

I, too, read the topic regarding insensitive family members and thought that some of the posters were a bit too sensitive or demanding. I agree that for the most part it is the celiac sufferer who must make accommodations and not expect the world around us to change to meet our special needs. I don't expect a waiter making minimum wage to be well-versed in the intricacies of celiac disease. I don't expect to be alerted for food preparation inspection prior to visiting my sister-in-law.

Having said that, however, I don't believe this post of yours is going to elicit much positive response or move the discussion along in a positive way.

[Tallforagirl]

Her behaviour does sound insensitive and over-reactive. I agree with sbj that those who suffer with special conditions can't expect the world to stop just for them.

I think she's banging her head on a brick wall trying to get non-celiacs to fully understand what she's been/going through. It sounds as if you, her family, have done as much as you can to support her but the level of support she's looking for can't come from you, because it's not possible for you to "get it" to the extent that she wishes you would.

I think she needs the support of other people with celiac disease, perhaps you could suggest or look into a local support group?

[elspeth]

tallforagirl, she does belong to an online celiac support group, so i can't really suggest that. i believe that stress and anger makes any health issue worse, and i have invited her several times to come to yoga with me but she refuses. she doesn't really get alot of exercise in general. i'm not sure what else to say or do, so i thought i would ask others who may have been in this situation.

[Tallforagirl]

Maybe you could try making light of it - each time you speak to her ask her about her bowels, and tell her about yours. At least you could try to get it out of the way before dinner.

I'm really not sure what to suggest, but she does sound unreasonably angry for someone who's had celiac disease for five years, and had time to get used to it.

[AliB]

Do you get the feeling that gluten-free is not all the answer for her? If she feels the need to talk about her bowel movements, are they still a problem even though she is gluten-free?

She may not realise that gluten-free is only the tip of the iceberg for some. Many also have issues with other foods including corn and soy, etc.

That is because the gut is not healing properly. Very often the damage can be due to gut dysbiosis and rogue bacteria. Although for some withdrawing gluten is the answer, for others, the type of pathogens can just transfer to a different food source and carry on. gluten-free foods are typically very high in starches and carbs that feed the bacteria so can sometimes for some people actually make things worse rather than better.

It does become all-consuming because you feel like you can never get on top of it. You have removed gluten and all is well for a while, then you start to become intolerant of corn so you withdraw that, then soy, then rice, then............and so it goes on.

Quite a few of us on here have discovered the Specific Carbohydrate Diet (SCD) that is designed to remove all the problematic grains, starches and sugar, most dairy and anything processed and concentrate on good, pure (preferably organic) natural foods - meat, fish, poultry, eggs, fruit, vegetables and salads, raw honey and yogurt for probiotic gut flora support. It may sound somewhat restrictive, but all of us on here who are following it are having great fun discovering (and inventing) new recipes! The only limitations are in our minds!

I have been following it for 9 months and am a lot better, and many others too have discovered the benefit of it. It is about taking out the rubbish and getting back to basics, about cleaning our bodies by eating cleansing and vital foods.

Is there any way you could just sit down with her quietly, the two of you and try to get her to tell you why she is angry? Is she frustrated because although she is following this she is not as well as she would wish? I wonder if her attitude is born as much out of frustration as of anger?

There is an SCD thread on the 'Other Food Intolerances' section on this forum if you, or even she wants to know any more. If you direct her to it - you can wait a week or two for this post to drop off the main pages to be more discreet.

Good sites to look at are the SCD website 'breaking the vicious cycle', Pecanbread (designed for kids with ASD but valuable resource for info and recipes for anyone with health issues), and there are loads of recipe sites and blogs popping up as the diet is gaining popularity, just Google 'Specific Carbohydrate Diet'.

If she does admit that she is not getting well enough on just gluten-free, perhaps you can mention that you found references to the SCD that seem to be very helpful for Celiacs and gluten-intolerants not getting better just on gluten-free.

Hope this helps.

[Jenny (AZ via TX)]

elspeth,

Maybe your SIL needs to talk about how bad wheat is to convince herself. I agree it's hard to eat out, but you can't expect everyone to change around you. My husband and I eat out and he always eats gluten. No big deal. He can have it and I can't. I have had servers put bread right in front of me even though I am the only one who can't eat it. I just move it.

I have a friend who is celiac also. She told me she went to therapy for grieving. I know some people are really against therapy and I'm not suggesting medication, just someone for her to talk to. She sounds terribly unhappy. Maybe a full blood work done to see if she is deficient in some vitamins.

I applaud you for being so supportive and trying to understand her. How nice for her to have a chef for a SIL and knows what gluten is!

[JNBunnie1]

elspeth, on Jan 5 2009, 04:49 PM, said:

ok, i have a feeling i may get bashed for this, but here goes:

You're not going to get bashed, at least not by me. What you are dealing with is a rude person, regardless of the subject of her behavior, and I'm impressed that you came here to ask for help, seeing that we would be sympathetic to 'Lucy's' plight.

Obviously, she's not getting something she needs. Don't beat yourself up for not being it, just because she's behaving so poorly.

[JNBunnie1]

sbj, on Jan 5 2009, 04:59 PM, said:

"Can't we all just get along?"


Having said that, however, I don't believe this post of yours is going to elicit much positive response or move the discussion along in a positive way.

The OP is just looking for help, sbj, not to get into an argument.

[Jestgar]

JNBunnie1, on Jan 5 2009, 04:35 PM, said:

You're not going to get bashed, at least not by me. What you are dealing with is a rude person, regardless of the subject of her behavior, and I'm impressed that you came here to ask for help, seeing that we would be sympathetic to 'Lucy's' plight.

Obviously, she's not getting something she needs. Don't beat yourself up for not being it, just because she's behaving so poorly.

That's pretty much what I would have said. Rude is rude.

Wouldn't help with the digestive part, but you and your hubby could go hard core gluten-free for a month just so you DO have an idea about how hard it is for her to eat out.

Maybe if she heard "Wow, when we tried this it was so overwhelming. I'm impressed that you handle things so smoothly"(Yah, I know, just go with it) then she'll feel less alone at the table.

[Mother of Jibril]

I think AliB's point is a really good one. If your sister-in-law is still having problems after five years on the gluten-free diet (assuming she hasn't been cheating)... she could really benefit from exploring other (additional) solutions. Corn, dairy, and soy are hard for a lot of people to digest. She could also have another autoimmune disorder on top of celiac disease. Hypothyroidism and Chron's disease, for example, are both associated with changes in bowel habits. Having one autoimmune disorder puts you at risk for developing more of them.

Plus... it sounds like she might be depressed. Speaking from personal experience, that can make it really hard to interact with people in a normal way

[mef]

Hi Elspeth,

First of all, thank you for being a supportive relative! You are going to great lengths to accomodate an "outlaw" and are doing a fantastic job at it. I wish I could be so lucky!

Her behavior might be a stress reaction. I know I was a control freak prior to being diagnosed and now I have to be even more vigilant about things going on around me....it's hard. Even though my family and friends are supportive, I still become stressed out when I have to go to a family event or to a restaurant because I feel out of control. While that is not an excuse for rude behavior, she may not even know she is doing it. Having celiac is not a dietary choice--being dx'd with celiac takes the decision to eat gluten out of your hands and, especially after years of consuming gluten, this process can be extraordinarily frustrating.

AliB may be right: there could be more going on with your sister in law. If she is still having GI syptoms, there might be other intolerances. It is tremendously frightening to know something is wrong with your body and feeling like you are not being heard. That may be why she is focusing on her diet so much. Even though she has had it for five years, it almost sounds like a "first year" of being gluten free. Perhaps you can try to designate a "health discussion" time and at meal times, steer the conversation away from that. She may be discussing her BMs with you because she feels safe with you. It's a difficult position to put you in because while you want to be empathetic, you also want to scream ew ew ew. If you feel comfortable enough with her, maybe you can mention that while you want to be supportive, it makes you uncomfortable to hear about that topic. However, given her behavior, she might turn it back on you. Just keep calm and focus on "I" statements. If you can't have that type of discussion with her, maybe you all could find non-food focused events to go to instead of dinner.

Good luck!

I did have to giggle about her freaking out about the bread basket and then moving it...herself.

[Mtndog]

Tallforagirl, on Jan 5 2009, 05:00 PM, said:

Her behaviour does sound insensitive and over-reactive. I agree with sbj that those who suffer with special conditions can't expect the world to stop just for them.

I think she needs the support of other people with celiac disease, perhaps you could suggest or look into a local support group?

I agree with this. I have always said that just because gluten is bad for me, I don't expect the rest of the world to stop for me. Maybe you could pull her aside and talk to her. Tell her you can sense tat she's really frustrated- does she need to talk? Empathy can be pretty powerful.

Mother of Jibril, on Jan 5 2009, 07:49 PM, said:

I think AliB's point is a really good one. If your sister-in-law is still having problems after five years on the gluten-free diet (assuming she hasn't been cheating)... she could really benefit from exploring other (additional) solutions. \

Or she could just be having a hard time with the diet.

[harp1]

Mtndog, on Jan 5 2009, 07:56 PM, said:

I agree with this. I have always said that just because gluten is bad for me, I don't expect the rest of the world to stop for me. Maybe you could pull her aside and talk to her. Tell her you can sense tat she's really frustrated- does she need to talk? Empathy can be pretty powerful.




Or she could just be having a hard time with the diet.

I belong to a celiac dinner group - maybe she needs to hang with celiacs and complain with them. It's been very fulfilling for me. I agree with the previous post

[debmidge]

Was her personality like this before her diagnosis?