Celiac-when Family Members Refuse To Get It

[angel42]

I don't know what to do anymore about my mom. I have explained how serious Celiac is till I was blue in the face. She keeps telling me to go back on gluten since living gluten-free is just so "inconvenient" like this is just some fad diet. She has absolutely no recollection of how sick I used to be and no recognition of how much better I am now. Is there anything to do with people like this? Will they ever get it or should I just give up?

[Mango04]

Is there anything to do with people like this?

Honestly, I would just stop talking to her about it. There is nothing you can do with people like that.

[scotty]

Honestly, I would just stop talking to her about it. There is nothing you can do with people like that.

i agree. there is nothing you can do. if you get reactions like i get red belly rash looking things you could smear it in her face

[hathor]

Have you tried giving her written information about the dangers of untreated celiac -- the cancer, the osteoporosis, and all the rest? If yes, then you have done all you can. All I can think then is that she is either supremely self-centered (is it inconvenience to her or to you?) or she cares so deeply about you that she can't absorb that there is anything permanently wrong with you. If it is a problem with denial as in one stage of mourning, then maybe there is hope that she will get it.

I wish you luck.

[angel42]

Have you tried giving her written information about the dangers of untreated celiac -- the cancer, the osteoporosis, and all the rest? If yes, then you have done all you can. All I can think then is that she is either supremely self-centered (is it inconvenience to her or to you?) or she cares so deeply about you that she can't absorb that there is anything permanently wrong with you. If it is a problem with denial as in one stage of mourning, then maybe there is hope that she will get it.

I wish you luck.

It's an inconvenience to her. I am going over to her house for dinner tonight and I tried to be very clear about what i could and could not eat. She was going to make this one dish and it didn't even occur to her to look at the ingredients. I had her read them to me over the phone, what was one of the ingredients "wheat gluten"! I mean seriously, I don't ask for alot but if you don't even know not to make me something where gluten is clearly an ingredient than I don't know what else to do. That's when she got annoyed and told me how inconvenient this all was. Gee I am so sorry that my not getting violently ill for days on end and compromising my immune system is inconvenient.

[kbtoyssni]

It's an inconvenience to her. I am going over to her house for dinner tonight and I tried to be very clear about what i could and could not eat. She was going to make this one dish and it didn't even occur to her to look at the ingredients. I had her read them to me over the phone, what was one of the ingredients "wheat gluten"! I mean seriously, I don't ask for alot but if you don't even know not to make me something where gluten is clearly an ingredient than I don't know what else to do. That's when she got annoyed and told me how inconvenient this all was. Gee I am so sorry that my not getting violently ill for days on end and compromising my immune system is inconvenient.

Can you bring your own food? That way you're not inconveniencing her at all. Plus, I don't think I'd trust eating food made by someone who doesn't get it.

[hathor]

Sorry to hear the additional explanation. Wanting to serve something with "wheat gluten" in it sounds pretty passive aggressive to me. Is she the sort where everything has to be about her? In other words, you have the problem, but she wants to convert it into a problem of hers as to how she has to cook special things for you (and so dismisses your need for those special things, because it wouldn't then be all about her and her problems). Just thinking out loud ...

I guess you do need to take your own food. Then tell her to avoid inconvenience in the future, you can provide her several possible recipes. And will come and help her cook them (because I wouldn't expect her to understand cross-contamination issues either).

[mamaw]

I totally understand what you are going through. At times I think family can be the worse ones to have to deal with.One also expects Mothers to be the most understanding of theilr children, you know they feel your pain & know your every desire........boy, I think that is not true for some with celiacs.

I think you have explained your illness & she is not or does not get it or she doesn't want to be bothered...I'm sorry.... But i've come to the conclusion that what goes around comes around... now I'm not a vindictive person but at times I've had a family member gluten me just to gluten me to see what happens.... well, I actually did a pay back when she needed help from me. I prayed alot before I did my pay back but finally she realized what a a___ ____ hole she has been .... I even got a gee I'm sorry for being a jerk....

I would not eat anywhere that I didn't trust I would be safe..... Plus consider the cc risks also. IF I visited her I would either eat before I go or else take my own food to reheat with me. If she made any comments about it I would just say well I've tried to make you knowledgable about my illness & you just don't get it. Maybe real news or media documented publications would help so it isn't just you telling her.

blessings

mamaw

[tarnalberry]

I don't know what to do anymore about my mom. I have explained how serious Celiac is till I was blue in the face. She keeps telling me to go back on gluten since living gluten-free is just so "inconvenient" like this is just some fad diet. She has absolutely no recollection of how sick I used to be and no recognition of how much better I am now. Is there anything to do with people like this? Will they ever get it or should I just give up?

Tell her "no" and move on. You do *not* need to explain yourself, as you control what goes into your mouth. You don't need her approval or permission.

[psawyer]

Tell her "no" and move on. You do *not* need to explain yourself, as you control what goes into your mouth. You don't need her approval or permission.

What she said!

[SillyBoo]

Gosh, she sounds like my mom! I haven't seen my mom since I got diagnosed last fall, so I haven't yet dealt with eating with her. But she is majorly in denial about my Celiac. I think that part of it is that she is unwilling to consider that she might be the one from whom I got this genetic gift.

I have known for decades that I had issues with food, but never was able to pinpoint the core problem until last fall. She often served (or tried to serve) me food with the known offenders because she was completely unwilling to change the way she cooked or to acknowledge my difficulties.

I think the best thing to do is take care of yourself, as you know you must, and try to focus on non-food activities with your mother. It truly is her issue, not yours, and there's probably not much you can do about it.

Good luck!

[Miriam3]

I couldn't say it much better than what everyone is pointing out here-- between the guilt over having maybe passed on a gene, worry that they might come down with the same "inconvenient" condition, and belief that all special diets are optional "fad" diets, we are all fighting uphill trying get real understanding from our families and friends.

I will say that my friends have been much more understanding and helpful than my family. I don't think this is because my family are jerks, though. I honestly think that since this condition runs in the family it's given everyone low expectations about what it feels like to be healthy

Things like chronic D, inability to keep on weight, stomach ulcers, are so common among relatives on my mom's side, I think everyone in the family thinks this is just what you deal with as you get older. I feel bad for them, but I just have to choose health and let them think I'm flakey. I try with the mainstream articles clippings though. Maybe someone will make the connection if it comes from a source they trust as opposed to their supposedly flakey relative.

[codetalker]

Tell her "no" and move on. You do *not* need to explain yourself, as you control what goes into your mouth. You don't need her approval or permission.

I agree with this poster. Taking a "just say no" approach is the only thing that has worked for me. I have given up hoping other people will understand.

[LoriC]

I don't know what to do anymore about my mom. I have explained how serious Celiac is till I was blue in the face. She keeps telling me to go back on gluten since living gluten-free is just so "inconvenient" like this is just some fad diet. She has absolutely no recollection of how sick I used to be and no recognition of how much better I am now. Is there anything to do with people like this? Will they ever get it or should I just give up?

i was just recently diagnosed by my dermatologist with DH, i had been suffering with IBS for almost 16yrs, so my family was well aware of that problem and did support me when i had my issues and bathroom problems if we went out to eat..NOW with this new diagnoses my dr. put me on a gluten free diet and dapsone, going to see a gastro spec, in Oct...my mother seems very doubtful i have celiacs, i'm not doubtful at all after reading this forum and talking to my family doctor. But we go to my parents every sunday for dinner and its usually some kind of pasta being we're Italian lol..Last few weeks all i heard was OHHH you can eat a little..or my god just eat. So the following sunday she prepared baked chicken, yams, salad, and dinner rolls, well i was eating the chicken and sald, and my yam, then she passes me the dinner rolls, i said no thanks..she started oh you can eat one it won't KILL you! i got a bit upset and said how do you know it won't? are you a doctor? do you live with my gut and rash? NO, so lay off of me, if you don't want to cook what i can eat, we can stay home on sundays or i'll bring my OWN food..then i felt bad but you no what, she was over my house last night, and she brought up my situation and apologized to me and said she will do what it takes to make me comfortable with eating, I told her, its not that i can't eat anything, but i have to be careful what i eat..until i get further testing done to confirm this, i'm sticking with my diet the best that i can and its not easy as i'm sure YOU all know.

My husband has been great, he even took me to a health food store yesterday, which was loaded with gluten free products, and i stocked up on things to try..then i met a lady there that has been gluten free for 7yrs..what an angel she was. she helped me pick some good things that she thought i might like and even gave me her phone number if i needed any help with doctors in the area or any questions that i might have..how sweet, she even bought me gluten free pretzels LOL

My kids are 16 and 12, they are starting to understand my eating habits now, my daughter will even sit with me at night and eat yogurt and a banana with me, so i don't feel left out with the other goodies..how sweet is that? They are use to my digestive problems as i said before, IBS for 16yrs, they no when mommy isn't feeling well. I'm very anxious to get this testing done, i feel stressed out with the not knowing. I don't no of anyone in my family that has/had celiacs..only person i no that had any gastro problems was my grandmother and she died of colon cancer 1 month after she was diagnosed at age 75..thanks for this forum and thanks for all the support in here Lori

[HouseKat]

My husband has been really understanding about the diet issues - he's been Type One diabetic since age 15. However, he keeps buying cheap nasty toilet paper, and then getting all hurt and pouty when I buy good stuff and refuse to use his. He just doesn't understand. He has at max one BM a day, I have a dozen or more, and cheap TP makes me sore!

[melmak5]

HouseKat - switch his out for sandpaper, ask him how his butt feels.

My house mates complained about me buying the "nice stuff." I told them they could control the tp quality when they were bleeding from their ass.

They shut up right quick.

Sometimes I loose my ability to be "sweet" or "nice" about these things. People don't need to "understand" they should just respect the fact that we know our bodies and what they need, or don't need. I don't need to understand fully why my sister refused to eat foods that touch, but I do respect her dietary wishes (as bizarre as they seem to me) and do not mush up her plate when she goes to the bathroom.

If someone doesn't respect you, you do not need to feel the need to "convince" them.

[ginghamkim]

Family can be the most difficult. Plus, most social occasions are centered around food which makes us very anxious. My therapist (yes, I recommend this to anyone), is to do the following:

(1) Send a letter or have a packet that explains celiac, the testing procedures, the side effects, what happens when you eat it (be blunt...that it increases your risk of cancer). Send this to all your friends and family. This way the will have time to read it and understand before they say something inconsiderate.

(2) If having a meal together is an important part of family bonding, perhaps suggest other way to get together and enjoy eachother that doesn't involve food. Perhaps, walking, going shopping, something (I have to come up with things myself).

(3) Have dinner at your place. Yes, this is inconvenient, but this way it is safe. I'm hosting everything this year...oye!

Just know you aren't the only misunderstood kid out there. Parents love us, they just need to hear it from an authoritative person (e.g., doctor) before they partially get it. All you parents who do get it...God bless you.

One misunderstood kid,

Kim

[stef-the-kicking-cuty]

Boy do I feel you. My mom does understand. However she's in denial herself...

@ Lori: Maybe I understood something wrong, but why do you already start your glutenfree diet, when you're not diagnosed yet??? I learnt, that this makes it very difficult to get an accurate celiac diagnosis. You should be on gluten to do the tests.

[Fiddle-Faddle]

@ Lori: Maybe I understood something wrong, but why do you already start your glutenfree diet, when you're not diagnosed yet??? I learnt, that this makes it very difficult to get an accurate celiac diagnosis. You should be on gluten to do the tests.

If Lori has already been diagnosed with DH, there is absolutely no need for further testing. DH in itself is a definitive diagnosis of celiac, and any additional gluten consumption would be tantamount to poisoning her!

Lori, I hope you are already feeling better gluten-free, and glad to hear your mom is coming around!

I must say, I am taken aback by SO many stories of family and "friends" who just don't get it. While my family is in denial over their own possible gluten problems, everybody is totally supportive of me, and not once has anyone tried to make me eat gluten. And my symptoms have always been so mild, I didn't even KNOW I had intestinal problems until I went off gluten (for the rash). My sister-in-law even goes to the store and buys Kinnikinnick bread and rice pasta for me when she knows I will be in town.

All I had to do was say, "Gluten causes me problems and I can't ever eat it again," and everybody said, "Gee, that's too bad--how should we handle it when you are here?" and that was that. I am only just now realizing how very lucky I am, and I am very, very grateful.

But I when I hear about people's so-called "friends" (what kind of friends don't offer support when needed??????) and family members glutening people on purpose, and NOT being supportive--I can't make up my mind if I want to clobber the "friends" and family or just share mine!

How dare they not support you when you need them to????? They've SEEN how ill you can get from gluten--how can they pretend that they don't understand? Why on earth would they try to harm you? What is WRONG with these people?????

Maybe you can think of it this way: you have 2 families. One you were born into, and the other is here on this board!

[angel42]

One reason I am trying to push the issue is that I am five months pregnant and my baby shower will be in November. My horrible mother in law wanted to have it in a regular italian restaurant where I could eat nothing. My mom offered to host the shower at her house so I thought it was ok but now it's an issue since she doesn't seem to get that I need to be off gluten and she thinks its unreasonable of me to expect people who are bringing food to bring gluten-free food. (We got into a huge fight over this)

[Fiddle-Faddle]

Do you have a doctor who is actually on top of the gluten thing? Maybe he or she could write a letter to your mother? Or maybe you and your mom could speak with his nurse, who could state to your mother that you are not allowed gluten every again, and that even a small amount could harm not only you but your baby as well?

There's GOTTA be something or someone who can put sense into her head!!! Your health is at stake!

Does she know that untreated (i.e., gluten-eating) celiacs have a higher rate of miscarriage?

[Rick45]

Celiac is herreditary, Your mom is a canidate. But probabley won't listen. Planting the seed of information will get it started. My mom has a long list problems with good blood tests and all. My nephew was DX 18 months ago and me 6 months ago. Only now is she going gluten free. She would offer gluten free food to me, I would refuse out of fear of cross contamination. I will starve before I eat gluten and get a migrain that takes me to the hospital. She now has new pans and goes into a long "I made it gluten free, new pans, new wooden spoons ..."

[JNBunnie1]

One reason I am trying to push the issue is that I am five months pregnant and my baby shower will be in November. My horrible mother in law wanted to have it in a regular italian restaurant where I could eat nothing. My mom offered to host the shower at her house so I thought it was ok but now it's an issue since she doesn't seem to get that I need to be off gluten and she thinks its unreasonable of me to expect people who are bringing food to bring gluten-free food. (We got into a huge fight over this)

Angel, there is the fact that this disease sets you apart from the norm no matter what situation you are in or how unfair it is, and you may always have to prepare your own food no matter what. Keep in mind, the people who are bringing food have no idea how to make their kitchens gluten-free and the food, though it be cut up carrots and cucumbers, may not be safe for you anyway. There's also the fact that any gluten-replacement items (muffins, cake, doughnuts) are HIGHLY expensive, and don't need to be purchased for anyone but you. Now if she's disagreeing with you about what YOU need to eat then that's different, but I've never thought it was fair to make other people pay more or go way out of their way when I can do something easier and cheaper, especially when everyone else at your gathering (I'm guessing) can eat gluten. Now, a wedding would be different, IMHO. A girl should be able to eat whatever she wants at her wedding, just for once!

[ginghamkim]

One reason I am trying to push the issue is that I am five months pregnant and my baby shower will be in November. My horrible mother in law wanted to have it in a regular italian restaurant where I could eat nothing. My mom offered to host the shower at her house so I thought it was ok but now it's an issue since she doesn't seem to get that I need to be off gluten and she thinks its unreasonable of me to expect people who are bringing food to bring gluten-free food. (We got into a huge fight over this)

How absolutely insensitive! It's your shower afterall! How sad that would be to see a almost full-term woman at her own baby shower eating her food out of tupperware that she brought for herself. That is sad!

Can you do a light appetizer shower? There are alot of gluten-free appetizer recipes. You could have two cakes...one for the gluten-lovers and a special cake for you and who ever would like to say "wow, that doesn't have wheat flour in it?". Or even better, if you eat dairy, cheesecake.

Fruit salad, broccoli salad, chips, bbq meatballs (with rice), lots of things. If you had to have a full dinner, there are alot of recipes. I have served food at parties that normally have gluten in them and nobody knew the difference. This can all be done relatively inexpensive with minimal work, but still looks nice.

My mommy friends are having a "surprise" b-day party for me at playdate next week (we do this for all the mommies), and I'm a nervous wreck trying not to plan it myself. I guess I'll take tupperware to my playdate.

Good luck! Kim

[tarnalberry]

actually, I have to agree that it is too much to expect your guests to all bring gluten free appetizers. it takes newbies a while to learn the ropes on ingredients and contamination, and you don't want to risk it on first-timers who don't have a vested interest in the problem. it's really quite a huge request for a one-time event like this. I would provide the food yourself, or work with a few people you're closest to in order to organize the food.