How Does Your Family Cope?

[hrly169]

I have been gluten free for 2 years now. I got tested and everything, and feel a hundred times better than I did growing up. My only complaint about my diet is my family. They just don't get it. What set off this post is I got a call from my grandmother last night telling me she did not want me to live my life in a bubble because I am a celiac, and the only thing I could think was at least I am healthy, and taking care of myself at a young age (23) My moms entire side of the family has had every health problem attributed to celiac disease, and though none of them have been tested, I would be willing to put money on the fact that the celiac comes from their side.

My mom especially acts like this is a choice of mine and seems to feel the need to constantly point out all the things I cannot do, cannot eat. Yes this diagnosis has had a huge impact on my life, especially my social life, but I can honestly say I don't feel left out, my life just takes a little more planning now.

I would love to hear other peoples experiences with their families.

Thanks

[Ahorsesoul]

I am so proud of you for keeping on this diet without your family's support. It's very hard and not something anyone WANTS to do.

[Gemini]

  hrly169 said:

I have been gluten free for 2 years now. I got tested and everything, and feel a hundred times better than I did growing up. My only complaint about my diet is my family. They just don't get it. What set off this post is I got a call from my grandmother last night telling me she did not want me to live my life in a bubble because I am a celiac, and the only thing I could think was at least I am healthy, and taking care of myself at a young age (23) My moms entire side of the family has had every health problem attributed to celiac disease, and though none of them have been tested, I would be willing to put money on the fact that the celiac comes from their side.

My mom especially acts like this is a choice of mine and seems to feel the need to constantly point out all the things I cannot do, cannot eat. Yes this diagnosis has had a huge impact on my life, especially my social life, but I can honestly say I don't feel left out, my life just takes a little more planning now.

I would love to hear other peoples experiences with their families.

Thanks

Your experience is probably very common and it mirrors the reactions I get from my own immediate family, so do not think you are alone. In fact, I have become a little estranged from my family because of it and that fact doesn't bother me at all. It took healing on my part to realize how dysfunctional the rest of them are!

I had the gene testing done and have a double DQ-2 Celiac gene. I was confused because BOTH sides of my family had flaming symptoms and I wanted to know which side carried the predisposition. Surprise, surprise......it's on BOTH! Here's how they all reacted to my news.......my mother literally hung up on me when I told her this explained her "IBS" diagnosis and her severe osteoporosis. Hung up the phone, she did and is VERY reluctant to talk about it at all.

My father is literally dying from Celiac, as we speak, and looks like he was just sprung from a concentration camp. He has numerous neurological symptoms that make him walk with a cane and spends 2 hours after EVERY meal in the bathroom. Honestly, I think his brain fog and confusion (they tell him it's beginner dementia) keep him from understanding my attempts to help him. His wife ignores me on the subject because, God forbid, they have to alter their lifestyle to accommodate Celiac Disease. That would impact their dining out every night. She doesn't cook, period.

My brother, the Type 1 diabetic with numerous other health problems which are ALL related to celiac disease, thinks I am crazy and won't even discuss it with me. His doctors have told him he does not have celiac disease but he has those doctors that don't know how to test for it correctly, plus he is overweight so as far as they are concerned, he couldn't possibly have celiac disease.

My older sister's daughter is all screwed up, in every way with celiac disease symptoms but she will not face up to it and has no desire to follow a healthier lifestyle. She is only 23 years old this year and may not live to be 40, at the rate she is going.

Every single one of my siblings and parents have other autoimmune problems which are Celiac related but think I am a raving nut case because their doctor's

all tell them they don't have celiac disease.....even though they have symptoms, a diagnosed first degree relative AND a slew of autoimmune problems. But what do I know? I don't have a medical degree and until I do, they will live in denial about it.

You are an incredibly strong and smart person to make the statement about not feeling left out and that your life "just takes a little more planning". I couldn't agree more. I have never felt this diet or lifestyle hard in the least, just takes a little more planning and that's not too hard to do either. The only "loss" I have felt is of convenience but the pay off is better health than I have experienced in my whole life. I look at my family and see how messed up they are but have to realize it's their choice to stay there. That is the hard part.....seeing people you know and love destroy their health voluntarily and then ignore you or get mad when you try to help. One of those sucky, hard lessons in life.

Stay strong and be open to change and the rest of your gluten-free life will be good and you'll stay healthy. Those who are least resistant to change will do fine on this diet and not have a problem with it. Good luck!

[OptimisticMom42]

Add my mom to that list. She has IBS and fibro, soy and dairy give her the "D". She's over 200lbs and takes 10 different medications. But she will not even consider changing her diet. She says, "As long as I'm home 20 minutes after I eat........" and "It doesn't make me very sick." And my favorite, "At least I can have a little..."

My reply, "Please insert the word poison in that statement."

She gets this tone in her voice like she's talking to a very small child who just isn't all that bright. And I want to smack her in the face with a big slimmy fish! So unless her computer breaks and I have to go fix it, I stay away.

The diet is easy. I feel great (cleaned that darn closet yesterday just because I felt like it). People tell me all the time that I don't look my age. Some of it is flattery but some of it is just looking healthy and alert.

Thanks for that chance to steam!

[ang1e0251]

I hear you about family, they don't get it but also many of them don't want to get it. I guess they are so scared about what it could mean to their lives they just can't mentally cope. My sister and her daughter are the same. My sister has started being snippy when I even mention it now. I guess I should just back off and let them live their lives. I can't make decisions for adults and have asked them to be tested for the past year and a half. They're sick but don't want that solution. I'm not sure they have it but with their other health problems it sure could be a possibilty.

I guess you just have to love them and wait for them to come to you. They know you have the answers. If they want help, they will ask. I would distance myself also.

I'm lucky my husband and my children are totally supportive of me. They believe what I tell them when I feel bad. My Mom does her best but it's a little beyond her. She at least believes me and asked about my food choices.

Just let them come to their own conclusions, feed them gluten-free food when you can and let them make their own mistakes.

[tarnalberry]

you're mom's right that it is a choice, but you probably also choose to get an education, avoid playing in traffic, and other sensible and healthy choices. she doesn't have to understand your choice, though. she just has to respect that you've made the choice and are dedicated to sticking with it.

[Gemini]

  Quote

She gets this tone in her voice like she's talking to a very small child who just isn't all that bright. And I want to smack her in the face with a big slimmy fish! So unless her computer breaks and I have to go fix it, I stay away.

Are you sure we don't have the same mother? Your statement had me rolling on the floor with laughter, even though the reality of not having a great relationship is nothing to laugh about. I SO feel your pain!

[Puddy]

My husband and children have been absolutely wonderful about coping with my Celiac and the precautions we have to take around the house. None of them have it. And two out of my 3 sisters have been very understanding....especially since I talked one of them into being tested and she also has it. But my 3rd sister....the one I live closest to and spend holidays with actually said this after I announced to the family at Thanksgiving that I had really good news and after 8 months on the diet, my bloodwork had all come back perfectly normal...."Well, good. Now you can eat whatever you want today and not worry about gluten." Oh, yeah, and her 35 year old daughter has several symptoms, but tested negative. When I suggested the gluten free diet as a trial, she tried it for 3 days and said it didn't work. Families!!!

[elle's mom]

All I can say is "be strong little root"!! You can be the beginning of a new family with a full understanding of this wonderful lifestyle, it's ups and downs, and someday your kids can say my mom (or dad) is fully supportive! I think MANY if not all of us can empathize your description of this situation. It makes me dread holidays.

[mysecretcurse]

My friends and family are very supportive. It infuriates me when I read all these posts on here about unsupportive family members. Or ones that just don't get it. Mine took a little while to get that that "just a little bit" DOES matter, although I had to beat it into their heads for awhile. I'm not sure they believed in celiac at first but after my mom saw me sobbing on the ground with lesions popping out all over my skin after an accidental glutening, I think she started to believe me. They've seen the change in me. I could show them pictures from 3 years ago where I was almost 20 pounds lighter, white as a ghost, terrible skin, thinner hair, etc. I've been on the diet(fully, I was off and on and in denial for a year before that too) for over a year now it's such a difference. The proof eventually becomes evident.

The worst problem I've had with my family is when they DO try, but simply don't understand HOW strict it needs to be. For a long time they would make this huge effort to cook for me, but they wouldn't understand that they couldn't just cook things "without flour". They would make a big meal and I'd check the cans they used and it would say "wheat" right on the label, but they wouldn't have thought to check because it was just "a can of soup". From there, the problem became trying to get them to understand that even checking labels wasn't enough because of hidden ingrediants. Sometimes they would get mad at me, as if it was my fault, but I think they were just frustrated that it was so hard, as was I. They have learned a lot, and now family meals are not much of a problem, they all are very educated because of me, which is my favorite part about being celiac (If I had to choose one), spreading awareness!

[lovegrov]

I'm fortunate -- well, fortunate in a way. My family saw me in the hospital for 11 days, apparently dying. They saw me miss 10 weeks of work and take months more to recover. And the only thing I did different before I got better was stop eating gluten. They KNOW this isn't just a choice, it's a necessity.

richard

[dream77]

I have this issue too.. people look at you funny and laugh like you come from Mars.

Friends (so called) shrug shoulders and say they never heard of it..

In laws say "you should eat a little bit"

Socially people think it is an attnetion seeking gimmick.. can you imagine that.. I feel sorry for these mentally sick people.

[NicoleAJ]

I'm fortunate to have a husband who is willing to have a fully gluten free household and kitchen, and who can even shop and cook food for me, knowing what I can and cannot have. My mother is also really understanding. Unfortunately, it's my mother-in-law who, at times, tries to act understanding and then at other moments, when she's stressed or needs someone to pick on, reverts back to discussions of how I lead a sheltered life or that my diet is "insane." I smile and tell her that her son appreciates the fact that I take care of myself so well because he understands first-hand how awful it was when I had to go into the hospital on an IV drip for 8 days. She generally backs off then. But my husband has also been willing to give her a good talking-to when she needs it as well. It's great if you can have just one advocate in the family who can help back you up. If not, it's good to keep in perspective that generally those critiques are really rooted in some other issue or spring out of sheer ignorance.

[mysecretcurse]

Ive also heard people say that Celiac is something people make up for attention. It baffles my mind, truly.

Why is it okay to treat Celiacs that way but not people with a peanut allergy or diabetes?

What is it about Celiac that people have such a hard time grasping/believing/understanding?

I just don't get it.

[FallenAngel8612]

  mysecretcurse said:

Ive also heard people say that Celiac is something people make up for attention. It baffles my mind, truly.

Why is it okay to treat Celiacs that way but not people with a peanut allergy or diabetes?

What is it about Celiac that people have such a hard time grasping/believing/understanding?

I just don't get it.

I don't know about the rest of you guys, but I didn't even know that Celiac even existed before I visited my doctor last week. After only a week, I have been feeling 100% better... (Well, I did have an issue with that one stupid candy bar I ate... I didn't check the ingredients. Why do they have to be so tasty?) Anyways, if you were in the same boat as me, you couldn't have made it up when you didn't even know about it.

As for my family/friends/coworkers, when I told them why my eating habits changed so suddenly, everyone was concerned and wanted to know what they could do to help. I have a culinary arts major friend who is currently concocting gluten free recipes for me so that I can eat with him, my boyfriend and all our other friends instead of everyone feeling like I'm left out. My boyfriend is wanting to clear out the house of everything that is not gluten free, but I don't want to make him have the same diet as me, so we agreed to separate everything. The bottom shelves are for all my gluten free stuff, and the top shelves are for the stuff I can't eat. I'm only 5 foot tall, so it's not like I can reach it anyways, lol.

I don't really feel left out either, a complete change in my diet is a decent sacrifice for me not having stomach issues, not having headaches every day, and not being as depressed as I have been for the past year that I've been suffering through this.

All in all, it doesn't matter if other people think you are making it up or not. If you have visited your doctor and they tell you what's healthy for you to do, and your family doesn't believe you, you can always have them go to the doctor with you if you have an appointment and let the doctor lay it out for them.