I get a decent amount of emails from fellow celiacs asking for help/advice.
If it’s medical question, I usually try to persuade them to find a GI who understands celiac disease (good luck with that one) as I’m reticent to give out any medical advice since I am not really qualified (though I did stay at a Howard Johnson’s last night.)
But sometimes I get emails asking for emotional advice.
I received two emails this week that just tore me apart. Both dealt with a recently diagnosed celiac whose family does not take the disease seriously…at all.
I provided some advice, but I also told them I would post their stories on my blog as we have an awesome community who would love to offer support and guidance (that would be you folks).
The first letter is below. It is from Mary (not her real name.) I will post the second one another day this week.
Please leave a comment and help Mary. Thanks.
———————————————–
Gluten Dude,
I have an ongoing issue and I’m not quite sure how to handle it.
Ever since being diagnosed with Celiac disease and DH, my family has treated me horribly about my disease. It has gone as far as being called a hypochondriac; that I use it as a crutch to not see family; that I’m afraid of dying.
I go to family get togethers and every stinkin time it’s comments like “oh well, just a little wont hurt” or “maybe I’ll grow out of it” or “you can have rice and beans, can’t you?”
I have explained so many times and they just don’t get it. And to even bring up cross contamination, oh man.
The last time I tried to bring a gluten free dish, that person over-rode me and assumed gf food was nasty and had someone else bring a gluten filled dish.
I’ve tried to just enjoy being with family without the food but it just keeps comin up and I end up being called the things I had mentioned above.
I know I’m not those things they say and I’m simply looking out for my health.
So my question is “How do you cope in this type of situation when all methods to detour it fail?”
My family thinks I’m being a B****, a hypochondriac, and that I’m not livin life and shelling up; that I’m using it as a crutch.
I show up and am so fed up with the stupid comments after explaining like a broken record and having them assume what they think I am.
Please give me some advice because I really need it.
Thanks.
Mary
Mary…this advice came in from somebody on my Facebook page:
I had a very tough time with my family understanding. I tried to educate them on the disease, which helped quite a bit. There is some great info out there. Not all of them “came around” but most of them did, in time…I would also recommend a celiac support group. Look in your area. Warm wishes and strength….
When I started my R.O.C.K. (Raising Our Celiac Kids) chapter, I invited family members to join the group for at least one meeting. My stepmother joined the very first one (mostly to help out) and hasn’t missed one since. What she learned in that first meeting was that my concerns for my son were not born of my flair for drama or overprotective nature when it comes to my children, but that there were other people living the same life.
The exact concerns I voiced during family functions about cross contamination and proper food prep were the very same things the other group members were talking about. The fears I had about play dates and birthday parties weren’t just mine.
I got an apology from my stepmom after that first meeting; not because she had truly done anything wrong– my family never discounted the diagnosis–but more because she realized she didn’t give us the support we needed from the get-go. And she has more than made up for it by learning, educating, advocating and helping to raise awareness.
In some cases, all it takes is one family member to get the ball rolling. Take them to a support group meeting, a doctor appointment or even just to a dedicated GF restaurant or one with proper GF menus/protocols. Sometimes they need to hear it or see it from (unrelated) others to really get it.
Great advice…thank you.
Thanks for this post Gluten Dude. This hits a nerve with me as I dealt with the stupidity of some of my family members this past weekend.
Oh, I got called a b….too. For not wanting to go to a Chinese buffet after my sisters graduation. I told this person that it would be a waste of money and I didn’t want to get sick. I told her to take me home and I’ll eat something at home. She said that was rude but I kept telling her that I couldn’t eat most of the stuff. I called my mom and she said no its going to look bad if you don’t go. My dad offered to go somewhere else where I could eat but I didn’t want them to change plans just for me. So there I went. I ate all naturally gluten free foods that I could find and prayed to God that I didn’t get sick. I was so angry that I didn’t even ask the waiter or manager what stuff was gluten free. I’m paying for it now. This trip wasn’t suppose to happen. The plan was to go home and eat but my dad decided to go eat. I was royally screwed.
I won’t even go into the cross contamation…my head might explode telling you those stories.
I couldn’t eat the food at the graduation party because it was filled with gluten. I didn’t have time to make myself anything in time but guess what one of my family members said it was rude for me to make something else for myself. I said it wasn’t and she said that I had to find food that was similar to what was served. I said no, because I didn’t like what was being served and couldn’t find similar items because I didn’t have time. I got yelled at. So I just ate veggies and nachos that were gluten free. That was my meal. Oh and some pound cake that I fortunately had made the night before from Pamela’s cake mix (big hit btw). All I wanted is to make life easier on them and me but they don’t understand doesn’t matter if I speak calmly or yell and curse my head off.
The rest of the weekend was hell. Another family made fun of me “oh you can’t eat that it has gluten” to everything I put in my mouth. I kept my mouth shut because I was already in trouble for defending myself and didn’t want to make it worse. Yeah, 30 yr old in trouble….
The positive is that the information that I printed out in Spanish informed some of my family members and they finally understood. Mary, I know I gave you a long story but I want you to know that you are not alone. It’s a struggle with folks that don’t want to be informed when you want to inform them but we must fight back stupidity and misinformation for our own well being. It’s been a constant struggle for me but I hope you can get through to them.
Print out some info and give it to them. Talk to them about how they make you feel. It may not work for everyone but at least you put it out there. I plan to do this myself really soon because I’m to the point that I don’t want to even talk to them anymore. I don’t want that for you Mary.
If you need to talk to someone please feel free to contact me @iamjtheblog on twitter. I wish you well. *hugs*
Thanks J. Again, it’s the issue with having an autoimmune disease tied to a diet. It’s not our fault. We certainly don’t WANT to feel this way.
My advice is to use Celiac awareness month as a way to send out some information on the effects of CD on the body. I always post something on Facebook and send out an email that thanks my friends/family for their support and also encourages them to check if they have any symptoms (especially since it is a genetic disease). Something like this link: http://celiac.org/images/stories/PDF/are-you-the-one.pdf
It’s hard to stay positive when everybody is trying to bring you down, but you are right.
I get absolutely disgusted at some people’s attitude. In most cases it’s downright discrimination. I work in a school and usually take my own food in for lunch but a few weeks ago I asked the cook if she cooked her french fries in a designated pan and she said yes so I asked her for a plate and she said okay I’ll do it this time but you should really buy the whole meal. I told her if I bought the meal that the macaroni and cheese which were on the same plate as the french fries would contaminate the fries. She said you could buy the dinner and throw the macaroni away. By this time I’m pretty annoyed an phoned the management and was told if they made an allowance for me they would have to do the same for the kids. I then pointed out that they did’t have a dietary requirement and then she went into the old health and nutritional value issue policy. She pointed out that french fries had no nutritional value and I very promptly pointed out that they don’t become any more nutritional by adding macaroni and cheese. Honestly I have never heard of anything so ridiculous in my life before.
Rant over
Mary from Bonnie Scotland
It doesn’t matter how much I educate my in-laws. They think that it is just something in my head that I made up because I developed my gluten issues instead of being born with it. Even with medical test results, they don’t believe me.😥
Mary, WHAT? Poor you, my husband jokes about it (he chases me with a slice of bread or says ” the coeliacs are taking over the world” but to actually say things like that!?! Do your family actually know the short and long term dangers of someone who isn’t on a STRICT GF diet? I know you’ve probably told them a million times, but keep telling them. I was diagnosed 38 years ago and my sister about 7 years ago. My mum used to pack me off to birthday parties with my own little tupperware tub full of goodies and when put out in front of the other kids the mums used to shout that’s Amanda’s so don’t touch it. I was special and yes I bloody am. Don’t get downhearted and remember you can choose your friends but unfortunately not your family.
I must also add that the Coeliac Society UK have been around longer than I have (1968) and they have been brilliant, lots of information and also a food directory. I know they are based in the UK but I find their website brilliant.
http://www.coeliac.org.uk/
Also just in case you haven’t heard of these guys
http://www.celiacsociety.com/
All good places to find information and support.
Hi Mary,
I would sugggest printing out some basic information about Celiac Disease and what gluten does to you and what the long term effercts are. Maybe they will get iti then. Start with the one person in your family that has the most influence. Your mother perhaps?
Unfortunately this will be a life long issue. Try to embrace it and not get angry you are only hurting yourself. Look at it as educating your family and be patient. It is hard for people to understand.
Remember it is about your health and you should not be made to feel you are being rude when you do nt want to eat something that is poison to your body. Try sending them this link if you have not already seen the video it is a great way to explain your disease in simple terms that are fact.
http://www.celiaccentral.org/Cecilia/
Keep smiling,!!! Do let let others control your emotions.
It’s so unfortunate, but you can print out anything you want, or try to have books for them to read, or posts from the Celiac organization – but the person or people have to WANT to understand the issue.
I give a giant kudos to the Stepmother that went with to the celiac support meeting, it just takes someone to WANT to go and sincerely cares. That in itself shows much love and kindness. Knowledge is power in my opinion, and when people are educated on the illness and can actually hear others talk about it, change can happen.
Some people are so negative that can’t see anything but their own ignorant opinions. It is terrible that it only takes one person to down play your issues when you have worked so hard to repair your health. It maybe your family, but some have very small minds, but rest assured something may happen in the future that they will rethink about the things they have done and are doing … but it just may take some time, keep the faith, and in the meantime,
Try and surround yourself with those that love you and care about you, and continue to live your life happily ever after.
Please know you are not alone. I ran into similar issues after being diagnosed. Right now, in the US, “we” tend to not consider people ill unless we can see it. If you get chicken pox you are sick, if you have depression, your illness is questioned or people don’t believe you at all. While throwing up (my favorite symptom) is quite visible, a lot of the hundreds of symptoms of active celiac disease are invisible. So know that our current culture/society does not understand or validate what you are going through. That does not make it right, but it is important to know it is happening all around.
Food, buying it, preparing it, eating it, is very social. We know who are friends and family are by who we allow to share a meal with us. When someone refuses to eat what is at the dinner table – for medical reasons, ethical reasons, religious reasons, or flavor reasons – they are “rejecting” the group. I am not saying this is right or wrong, but that is how our societies are set up. Historically, we don’t have a lot of experience with this. It is a new thing. We as “food outsiders” and “them” as people without new dietary restrictions have to figure out how to navigate this together. That does not mean it is right for them to shame you, or blame you, but their acting out is because they are HURT. They feel rejected by you rejecting their foods/venues/events. It is a grown up temper tantrum, and it sucks for EVERYONE involved.
What you can do:
GET SUPPORT – I couldn’t make it to local celiac support group meetings because I didn’t have a car. I found an amazing network of people on celiac.com in the “forum” section. (I no longer participate, but that is a different story)
KEEP GOOD PEOPLE CLOSE – if you have even one friend, family or loved one who “gets it” or is TRYING to learn, hang out with her (or him)! Do fun things together!
For those who don’t get it, KEEP IT SIMPLE. You are not going to change their minds with one more factoid of information. Taking the “sex ed” approach to answering just what people ask is often helpful. If they just want to know why you aren’t noshing down on egg rolls, you can just say “I cannot eat gluten”. If people want more information about villi, they will ask you. Trust me, they will ask.
DO WHAT YOU WANT – Eat beforehand, bring your own food, participate in whatever you want but keep yourself safe. Remember you get to say “I don’t want to talk about it now” whenever you want or need a break. This disease can make you feel like you have NO control. You do. And remember to take the time to do what you want, and how you want to do it.
This is redundant, but know YOU ARE NOT ALONE. This is the single biggest, most important thing I can tell any newly diagnosed person. Reach out to people who understand. We will talk about poop, families, work parties, holidays, missing foods (PIZZA and BEER), reading rx labels, and there is a lot less judgement. You will be amazed at the conversations, and sometimes friendships, that happen in the specialty food isles of grocery stores.
If you are feeling alone, know you are not. If you are missing something – ask others for recommendations. Your gluten-free peers are more often than not more educated than medical professionals and can and WANT to help.
This is not fair or easy. You are a champ for reaching out for advice.
With lots of love,
Kristina
That’s excellent advice!
Thanks for this comment and thanks for the post Gluten Dude. You are definitely not alone, Mary. I wish I had more advice to give you but I’m struggling with the same things. As Kristina said, you are definitely not alone.
I was going to write a few suggestions but Kristina has said it all. Great post!
I was listening to NPR the other day and it was a program I’d never heard before. I looked it up yesterday, (totally unrelated to celiac disease) onbeing.org. However, I noticed that they invite anyone to submit an essay. They say they want pieces that should “touch on the human condition and the meaning of things to help all of us better understand our world.” This could be another avenue for celiacs to get their message out. just a thought.
Mary, it seems your only options are to remain persistent, eat before you go to a family function, or stop going until they “get it.”
So well said Kristina…thank you.
Great response, Kristina!
Mary, it feels awful when members of your family do not love all of who you are – broken bits too. I am sorry you are living this experience.
My step-mom chooses not to be supportive and behaves in many passive aggressive ways during family gatherings where food is involved. At first it left me feeling hurt and bewildered, but over time I began to see she was lashing out over her own fears, and this insight helps me not take what happens too personally. It isn’t about me, it is about the changes that my diet forces others in my family to have to consider, work around or accommodate. We as a family obviously have control issues.
The other really big lesson for me was to learn how to stand up for myself and my health. It took time, but I no longer apologize for eating differently, for bringing food that I enjoy to events (so what if no one else will eat it – but some do and they really like it). As, for those who do not want to listen to explanations, do yourself a favour and stop explaining. You can’t (and shouldn’t) try to change other people. Smile and walk away when they are inconsiderate, and accept them for being the small minded relatives that they are – broken bits too.
Very perceptive…
this hits a nerve with me, my old school italian parents say that im making life difficult on them when ever i go over to visit, they tell me its all in my head, just eat what everybody else is eating
Dear Mary,
Please remember that it is them being rude and insensitive not you. At family gatherings it is supposed to be you spending the time with them that is important not what you eat. Maybe I have a bad attitude, but I don’t care what other people think, I want to be healthy. If they can’t respect that it is their shortcoming not yours.
Good luck, and revel in feeling good again. Kristi
Mary, my heart is breaking for you, doll. Celiac is hard enough to handle without throwing into the mix family and friends who just don’t “get” it. If you are looking for legitimate information to pass on to relatives, the University of Chicago’s Celiac Disease Research Center (http://www.cureceliacdisease.org) has lots of things you can print out or link to. Use Celiac Awareness Month as a way to demonstrate that you have a REAL disease, a serious one, and that it is nationally recognized.
But if people still don’t change their attitudes, YOU have to be the change. Take care of yourself and show how much better you feel following the diet. Being gluten-free should dramatically improve your quality of life, and thus, the quality of time that you are spending with your loved ones. And look for support at with local GIG groups or here online. You’re not alone!
Mary and others,
I can only hope your family comes around.
I recall struggling with ‘do i take GF food to in-laws”s house and risk offending them with bringing stuff I can eat–basically saying they can’t feed me–or do I just chance it and see what happens.’
The first time I chanced it, the second time dear husband said that they offered to take care of it, I arrived and they were SOOOO happy they had bread for me, and they pulled out a package of “NON-WHEAT WONDER BREAD”. I looked at DH and then had to say something along the lines of, ‘you do realize there is no white plant, right?”. . ther’es wheat, corn, rye, sorghum, tapioca, potato, but no white plant. I tried to do it in a joking manner and I’m not sure if that came through, but the fact that white bread is STILL wheat bread did get through.
I then went to the grocery store and pointed out what we eat, what I buy [Dh eats GF because I cook and I eat GF–he has NO problem with it, and he gets to order gluten pizza when I’m not around, he eats gluten at work, etc]. . . . They were SHOCKED by the high prices and couldn’t fathom spending that much money on food.
For the next while I’d take my own bread down, we’d take down Pamela’s pancake mix –DH LOVES that and he tried to get his mom to use it, but nope, she wouldn’t. It was “special” and “expensive”. HIs mom would make sure I’d not leave anything behind and I always felt like it was because she didn’t even want it in her house.
Dh and I eat completely different than his family THAT is tough in and of itself. WE don’t eat a lot of candy, rarely any soda pop, we eat more fruits, veggies and meats and not any big to-do type stuff,
It’s been five +years since then and MIL is halfway there.
Though I offered to make some of the holiday food items, so I could use some of the ingredients and make mine first and make it GF, MIIL refused, she made everyone’s and then offered to do mine. I said that was fine, but I didn’t need it anymore.
DH has given up on his mom even understanding it completely. At first he thought it was possible, now he’s fine with me just going with the flow.
We often stop at a place afterwards that we can both dine at so we can fill up on food that is food to us.
My dad totally gets GF and he’s really careful about it, or asks us to double check things. Mom would forget, but she doesn’t do the cooking anylonger, only dad, so it’s not much of an issue.
Dh and I recently fell in love with TANKA bars, bison and cranberry meat bars from Pine Ridge Reservation South Dakota. VERY yummy . I always try to keep a couple in my purse for when we’re out and about and don’t have time to eat or simply can’t eat what someone else is having, then I can eat this and my tummy won’t rumble for the next few hours.
Bison meat bars?? Ok…I seriously need to try one, if only so I can say “I had a bison meat bar”
Tanka Bars: They have a few different styles (regular, spicy, bites, and then the sticks have rice in them)
100% Natural Buffalo Cranberry Bar 1oz
*All buffalo and cranberries have no artificial ingredients and are minimally processed with care
**No nitrates except for those naturally occurring in sea salt and celery juice. Federal regulations prohibit the use of growth hormones in Buffalo.
Ingredients: Buffalo, dried cranberries (cranberries, sugar), sea salt, lactic acid, celery juice, black pepper, spices, garlic, onion powder, red pepper.
(Natural Curing Method is Patent Pending).
http://www.tankabars.com/
TANKA BARS
Made from real buffalo meat and cranberries and based on a centuries-old recipe for using fruit to preserve dried meat, all Tanka products are gluten- and dairy-free. Excellent for snacks, hiking, camping, hunting, or anytime you need a delicious and healthy pick me up.
I guess seeing me spend 2 weeks in the hospital with severe malnutrition educated my family real quick. They’re all kind to me and supportive of my condition. I’m sorry for those of you who have families that don’t understand!
I think the key is to not let everything be about food. Get that in your head. Everyone is not that interested in what you can or cannot eat. I try not to talk about my celiac disease in groups. If someone comments that I didn’t have much to eat, I answer that this is not my last meal and I’ll get something later and laugh it off. Now I eat to live and it is separate from socializing. I want to be invited to socialize. Most people are ignorant concerning gluten free as I was when I was first diagnosed. A support group is a better outlet to discuss celiac disease or a trusted mate of friend. It’s not that important that everyone support what you eat. Really.
That’s what I think too Donna. Invite me over. Who cares about the food? It’s not always about the dang food.
I have an older coworker at my second job. She tries to mother all of us—she tries to inquire what I eat, etc. and she goes on and on and on about GF things she finds at Sams or the grocery store.
I oooh and awww over these things because otherwise she is upset if she is not the first to inform me of something.
I took a sandwich into work one night, fabulous meat, cheese, mustard on bread.
She looked at it and went, AH HA, you ARE eating bread! That’s gluten.
I said, no it’s not. It’s Gluten Free. I proceed to show her the empty bag of UDI’s in which I had packed the sandwich.
She got this hurt look on her face and then was like, ‘oh whatever’ as if she just was waiting to see me eat gluten.
Uh, yeah, that is so NOT going to happen!
Surround yourself, as much as you can, with people who support you and don’t let the naysayers get to you. Know that they very well could be celiac too, and that they are only holding themselves down with the poison called hatred and no compassion.
Hey Ya’ll these responses are super great and I’m going to address a few things in your responses. I have joined a small support group here in Lubbock, Tx where I currently live. The awareness here is almost nonexistant. I have in no way scrutinized my GF eating because of the ignorance. Someone mentioned my mom to help get everyone to understand my concern which is not an option due to her being deceased. My father is also one of the stubborn and unwilling to understand my concern and feeling. The passing out of pamphlets and or videos is a great idea and I might just have to give it a go. My family is very stubborn and hard to break them from habit. Like stuck in their way type people. All get togethers with my family have been surrounded with gluten filled foods and drinks all the time and has never been a change. When I visit I have limited and visited during a time when no one expects and when I know there will be no food around. It does help. I do agree that get togethers shouldnt be based around food all the time. I think Im just gonna keep on what I’m doing and keep on trying to educate them even if they let it roll off their shoulders or roll their eyes or call me awful names because in the end I know I’m doing good for me. Thank you Glutendude and others for the insight and advice. Its good to know Im not alone in this lil old town. I’m getting stronger everyday knowing that yall are out there and willing to give advice. Guidance, love, and understanding! Thank you peeps!
Keep the faith Denise (Mary). We’re all pulling for you.
I recently spent 5 weeks with my kids and grandkids, to be there for my daughter when her youngest was born and let me tell you, that was an eyeopener. I’ve only been gluten free for year, but because I’ve tried to be so careful not to be glutenized, my system is really sensitive. It blew me away how much gluten a young child ate in a day, every meal in fact, and any time I fed my grandson, there was no way I didn’t end up getting it on me. It was impossible to be careful enough so I spent the entire 5 weeks getting sicker and sicker.
My son-in-law did most of the cooking, and was very careful to ask about things first, but the usual culprits slipped him up, and we felt terrible when we discovered I couldn’t eat what he’d prepared. My son, too, was so conscientious that he would catch some things even before I did, but still forgot about cross-contamination and would touch the knife to his bread when he used mayo.
Sadly, it was my daughter (whom I had come to help!) who didn’t take it seriously, treated it like a “diet” as opposed to a disease, and would pooh-pooh me when I had to wash my hands as soon as I fed her son or was finished washing her dishes. Even my 2 year old granddaughter understood that if she ate bread and kissed me, she would make me sick for days, and she didn’t take it personally.
I agree with Kristina… no matter what, YOUR health is of the utmost importance and if *anybody* doesn’t take that seriously, you don’t need them in your life.
Exactly Lisa!
Ugh, it just makes me mad to hear about how people with Celiac Disease are treated by their family and friends. It’s horrible enough to have this disease and so much worse when other people treat you badly because of it! I’m very lucky in that my family is very understanding and sympathetic. Although I’ve occasionally had problems with my dad bringing normal bread into the kitchen and not cleaning up the crumbs. My mom spent nearly 1 week cleaning out the entire kitchen (as I’m extremely sensitive and wasn’t healing for the longest time). Yet when we kept telling my dad not to bring bread in the kitchen, he got very defensive. There’s been times when he’s snuck it in but we usually find crumbs. It’s frustrating and upsetting and we can’t understand why he continues to do it. However, things could be much much worse and they aren’t. I don’t live at home but visit several times a week.
Some of my other family are in real denial about CD in general, even though I suspect some of them have it. Some of them have poo-pooed it with my mom about my disease but never in front of me. Still it’s really frustrating and I get the sense that they think I’m a hypercondriac. But at least they aren’t nasty about it. Just uninformed and not terribly sympathetic, although some of my extended family is also very understanding.
I just don’t get it. Why would anyone doubt the disease itself. Just because it’s associated with food?? It’s just crazy.
When I read stories like this, I’m so very thankful to have the family and friends that I do. My husband and I had just started dating when I first got sick and didn’t run the other way when he could. My mother and my mother-in-law go out of their way to ensure there is lots of safe food for me whenever I go to their house. (sometimes I think my mom has more GF snacks at her house than I have at mine!). My friends and my husband’s friends do the same. Of course there have been people who don’t understand and don’t get how hard this life can be, but guess what, they’re not my friends. At least not anymore.
Mary, I’m so sorry. I am lucky enough to have well educated friends who know that I never make myself the center of attention. If I say I can’t eat something…I CAN’T EAT IT! For the most part my friends and family are really accommodating. It helps that my sister-in-law is also gluten free. My husbands family however…..not so much….but not nasty. I always offer to bring food to parties. I’m a good cook and an excellent baker. My husband’s family refuses my offers. The last time, there was literally nothing for me to eat…lasagna, garliic bread, meat balls, and salad…with croutons already in it.
I always eat before I come, or keep an emergency supply of Kind bars in my purse.
I always offer to bring a dish and I won’t stop offering.
Educating people takes time. If they care, they’ll learn.
A month has gone by and still no change. I’ve been told that I am no fun anymore and that I need to live life and that I should try it because I will like it, the blacksheep, still a hypochondriac, its all in your head, we didnt invite you because its not like you can eat like us. I have never felt so alone and out of place but you know what its their fault for losing a sister. All I ask is for them to understand. A sister called me weak and compared my disease to her getting beat in a past relationship. I told her straight up, my disease was not a choice and that she had the choice to leave her situation. Im not weak. I straight up went cold turkey on gluten to feel better and heal my body. I have a will to live and fight for my health. If anything she is weak. I lost a sister to a verbal agreement. Im so sick of it. I dont need that ignorance in my life and I am starting a new journey without them. I have adopted new people in my life that understand and Im super happy with that!
Real sorry to hear Denise. I don’t get it. On top of a crappy disease we already have to deal with, there’s also the outside factors of people not taking it seriously.
WTF????
Not sure if you saw my blog post today, but it spoke of just this topic: http://glutendude.com/celiac/i-no-longer-have-celiac-disease/
Hang in there. You’ve got family here.
Yes I did see the blog for today and it was awesome. They keep me going and keeping me positive. Keep it up! I absolutely love your blogs and hearing new peeps stories and lessons. It helps so much! Someone get this dude a badge, a certificate, hell something for all that he does! He is one SuperGlutenDudeman!
SuperGlutenDudeMan…I like that 🙂
Denise, I feel bad that you are going thru such a hard time with your family. I don’t know if the relationship is too far gone yet but Is there some way you can get your sister’s to your dr. to talk to them about celiac disease, and how serious it is. I also might add, that they sound really immature. You keep sticking up for yourself, and I am glad you have removed yourself for now, and are with friends that understand.
It is not easy having celiac and being estranged from ones family makes it so much more difficult. There is a possibility that they may have it too! Another reason to see if they would meet with your dr. and vice versa.
Good luck, and GD has set this site up for support, you will get it here.
Thanks Julie. But it is too far gone to mend anything with my family. If they want to see me then they can make arrangments to see me and will jave to leave their ignorant comments behind. Your right, they are immature and they are older than I am except for one sister. Its sad but I have tried so many times Julie that they just dont get it. I’d rather.live my life happy rather than waste my energy on something that they will not want to understand. I mean how many times do I have to explain for someone to actually get it? Im tired of the hurt and pain. I know of two of my siblings who have symptoms but they refuse.to get tested and have said comments like ” Im already old so what? Or sometimes they’ll say that Im taking it to far and that Im gonna die anyway. ” Ive found Glutendude and so thankful for his blogs because they really do help and he.gives it to you straight. He.is so awesome! Keepin my head up,staying GF, and never looking back ever!
This hits far too close to home —
My family has been this way since as long as I can remember; also dealing with middle child syndrome didn’t help matters either. No one in my family takes me seriously when I say I am extremely allergic to gluten. Once ingested – like many of you know – I am pretty much incapacitated in severe pain for days on end. My family plays it off like it’s a joke. When I speak – nobody listens, instead they find comfort in verbal abuse – which like when I was younger – accompanied the physical that my father put me through. To this day they give me hell – that I haven’t amounted to something.
Having this condition has put me in a less than desirable position, financially. When my family turned their back on me and this “imaginary/hypochondria condition” I had no choice but to seek refuge in my car, which is not fun when you are glutened – by accident. I don’t know how, but I’m resilient and somehow find ways to keep my chin up. All of this has inspired me to somehow find a way to go back to school to become a physician. Although today I still sit in pain.
Hmm, I have faced plenty of ridicule over my illness. My sister said, what you don’t know aobut won’t hurt you, You were eating normally before you found out, why worry now! She has refused to get the test done.
When my dad died my family refused to sort out a gluten free option for me at the funeral despite the fact that my dad had coeliac disease! Their attitutde seemed to be that I was being selfish for making a fuss under the circumstances! Afterall there were far more important issues than worrying about what I was going to eat. Easy for them to say when there was plenty put out for them!! My dad would be devastated to learn what went on particularly since my mum always used to be the first to make sure he was provided for! It was a stressfull day as it was and the thought of going back to the wake afterwards and not being able to eat was worrying when I knew I’d be feeling feint anyway. I was told ‘it’s not a party with a buffet you know!!’ I didn’t think for one minute it was, but I knew I’d be feeling crap and I’d be drinking on an empty stomach… Mum eventually said, bring a packed lunch! I felt like bringing one and making a big show of what I’d had to do so that everyone would know, but of course I didn’t. Mum eventually made me some sandwiches but it was a very hot day and they were disgusting
I was diagnosed about 4 years ago after losing a lot of weight very quickly. Most of my family are very supportive, including the MIL. I’ve even persuaded the work canteen that gluten free is doable, and other employees have come “out”.
My main problem is my stepdad. Living in the UK, eating out shouldn’t be a problem, but it always takes longer to order in restaurants, because you need to know what’s safe. Well, going out with Dad is…interesting.
With his advancing years, he’s becoming gradually deafer, so imagine the embarassment as he shouts to the whole building…”Have we all ordered yet? No? Why the ****** not? **** Kitty! Why can’t she just ****** order something and have done with it? Well, she was ill ages ago! She’s better now – why does she still think she needs special food? No-one else makes such a fuss!”
On the positive side, I feel so well since I’ve been diagnosed. Several unresolved health issues have sorted themselves out since going gluten-free. So my message to everyone here is to ignore people who think you are a nuisance. Go out, enjoy yourself, and be strong! Emphasise how WELL you feel since you have gone gluten free as much as you tell everyone how ill you get if you get glutened, and hopefully you will carry the crowd with you. And if they still don’t believe in your illness, then they are the ones with a problem.
Best wishes to everyone reading this helpful website.
It’s shocking to see how you’ve been treated. It is embarrassing when you’re out and you have to try and explain to the waiter that you’ve got this illness, not so bad if you’re in a good restaurant but if you’re somewhere like Beefeater for example, they haven’t got a clue and it can take ages to get understood! To be honest though, I”ve never felt great since I got diagnosed personally! I found out I had this illness by chance and didn’t really learn much about it as my dad had it so I just saw how he managed it and left it at that. I realise now from this site that I’ve not been taking the care I should have been and that’s almost certainly why I’ve still been ill! I’ve been sticking to the diet fairly strictly but not worrying too much about keeping a separate work area for my stuff! I’ve tried to keep on top of keeping things clean but obviously not been as effective as I thought. Unfortunately unless people suffer themselves I don’t think they’ll ever really appreciate what we’re going through. But it’s great to be able to exchange views with others who are affected x
Hi Amanda S,
Having not eaten in a Beefeater, I can’t comment on your particular case, but many of the larger chains have “allergy menus”. It’s generally a folder hidden under the counter with all the menu items, listed by component, with a grid showing which allergens are present (or absent) and whether there is a likelihood of cross-contamination. You need to ask for it especially, but it’s generally easier than trying to explain in a busy chain restaurant where there may be limited interaction between waiting and kitchen staff.
The best thing about my dad’s behaviour? I am the one “causing a scene” by discussing my needs quietly with the staff. (And he’s not attracting any attention by shouting about it to the whole dining room????)
Hi Kitty
Thanks for your response, I admit restaurants are getting better at providing information, the only thing I worry about is what goes on behind the scenes that you can’t see. They may tell you, oh no problem madam, we’ll be careful about cross contamination and prepare that carefully for you, but when you’ve got a busy chef who may have little understanding of the illness they’re not going to worry are they? I’ve just accepted that I may be eating something without gluten but I can’t guarantee that it’s not been affected by cross contamination at some point. However, having now started to learn more about the illness, I’m thinking I may be better of staying at home which would suit my husband as he hates eating out anyway!!
Hope things get easier for you with your family, especially your dad!
They are just arranging the Xmas party at work. Two restaurants are in the running, so I phoned them up. First one says “Oh yes, the soup is gluten-free, you would need to have that without the bread of coure” and carried on the the same vein to the bottom of the menu. Second one says “Oh, erm. I’m sure the chef can make everything gluten-free”.
Guess which one I’m voting for?
(Bad news is that everyone else seems to prefer the second one…)
That’s typical and you’re going to feel awkward if you make a fuss about it?! It’s so frustrating at times like this when others don’t realise just how difficult it is for you to go anywhere in the first place. I remember when I was working (I lost my job) it was at the time when the world cup was on they decided to treat the office to pizzas and beer! Some people were aware of my illness but they just don’t think about it when these things occur do they? It seemed like it was all agreed and as it was a treat you couldn’t really turn around and say well thanks very much but could you get me something else and you don’t get a lot of options with pizza places do you? It was awful, I had to sit and watch everyone else drinking and eating!
Fingers crossed they go with your preferred choice, maybe you should try pointing out your reasons for preferring one over the other… Good luck x
Hi Amanda,
I’m now faced with the sparkling choice of paying £20 for a meal, and taking all my own food or stopping in the ofice and minding the phones.
Oh joy!
I feel your pain! We live overseas and are preparing to come back home to visit over the summer. My sister is insistent that we stay with her, but I know she has talked behind my back, saying that she thinks I’m gluten free as a fad and that it isn’t a health risk. How can I possibly put my health on the line by staying with her now that I know she won’t put my health above her closed-mindedness?!
I have had a similar issue myself…I hope your family comes around. If they do not, I hope you can garner support elsewhere. You are an incredibly strong human with a chronic illness. You made it this far – and you will go so much further!!
As the Ptolomey’s said “One does not choose their family.”
With much love and support.
_Exzavier Smith_
I can so relate to all of the posts in here BUT, my story doesn’t have a happy ending. My family has never accepted my diagnosis nor will any of them get tested because my mother’s doctor told her Celiac wasn’t hereditary (mother has ITP, early menopause, severe acne, gastro problems she’s taking nexium for and the list goes on). I have been ostracized by my entire family and when I asked my mother if I could fly out to see her in November or December for a few days, she said no because she didn’t want to have to cook differently for me and she was afraid I would get sick. Mother refuses to come see me because she doesn’t travel well. I’ve been told by several family members that I shouldn’t be so bitter about this but I ask, why shouldn’t I be bitter, my entire family has turned against me. And before you say it, yes I’ve tried posting articles, printing out literature, suggesting attending support groups and all was dismissed or rejected. So, I don’t attend holiday functions, birthdays, anything. I still send card for special occasions but none of these people send me cards and such for my birthday and ya, it does still hurt.
That just sucks Nancy. So undeserved. Sorry ;(
Dear Nancy,
Stop wasting your time and thoughts on these people, even if you share some same DNA… There are soooo many people in this world. Surround youeself with good and caring people. Friends are most of the time more loyal and loving than your “family” members. That’s the difference between what you see on TV and real life. Take care.
man, i though i was the only one who got made fun of… when i first got diagnosed in 8th grade, i had some “friends” who thought it would be funny to try and shove bread in my mouth. Ive also had a teacher tell me to suck it up because i “wasnt in immediate danger like i would be with a real allergy” when i was doubled over in severe pain just because my sister and i used the same toaster that morning.
I read the letter from way at the top and got so angry thought about saying feed them shrimp and when they have the shellfish allergic reaction see how it feels, but that would be a BAD IDEA.
It’s frustrating. I personally have family who have spent hundreds on groceries and I’m ALWAYS cheating on my diet.
If that last sentence is true then I really am a troll. It’s not true. I care about my health and our grocery bill has not increased. My family does make an effort, like buying things they know, GF cake mixes (doesn’t matter which kind), GF cookies, GF bread, GF pastries, GF chips,the very expensive hot dogs, all meats and potatoes.
Well and salad in a bag.
Truth is dear Mary even though you a lot of GF products have many ingredients that may seem like only NASA can pronounce or that other allergen triggering foods give more obvious deadly results, your family loves you and are fully aware that a roux in gumbo is just as toxic as a shrimp for someone who has a seafood allergy.
They also know that You Are Hurt. In there eyes you’ve been eating pancakes for years and your fine! Now you can’t touch a pancake or enjoy the Ihop or Waffle House. They like my family doesn’t like the idea that they have possibly been feeding you “toxic food” and now you are confirmed sick and it’s pernanent. Doctors can’t remove your entire colon and intestine and expect to you to live.
They just want you to eat pancakes and be fine, healthy. Also if it’s your mother, well your her baby at any age.
My advice which is helping me as I am typing this, is don’t make GF food. Make normal food that just so happens to be GF. In other words next dinner party make fresh fruit salad with safe to eat fruits, fruit dip, and bring a box of GF cookies that privately your dietitian has okayed.
Everyone does love a good fruit salad. As far as close family, eat what u can, eat the fruit salad and enjoy the conversation. They will recognize that you don’t want to risk intestine cancer and you can live a long healthy life and you are okay.
When I got diagnosed I told my parents they should get the blood test. My mom completely lost it and started screaming at me saying things like “How dare you go behind my back and try to put this on my husband!” and she shrieked at the idea that she might need to get tested. Screaming “LET US LIVE OUR LIVES!”
My dad wouldn’t get tested because he doesn’t want to change his diet and he was also afraid of my mom’s reaction were it to come up positive.
The thing is my mom has tons of stomach issues and seems to be very gluten sensitive herself. The only bread she can tolerate is gluten free bread. Yet she still absolutely refuses to acknowledge that she’s celiac. I truly believe she is. She eats mostly gluten free now but still has flare ups because she refuses to acknowledge her condition.