Need help desperately now!

[gluten-free girl 67]

I am having an emotional breakdown. I was diagnosed in 2010. Long story short. Today I was invited to my sister’s mother in law’s house for Easter. She told me they are having take out chinese food. I know everything will probably have soy sauce on it thats isnt gluten-free. So I asked my sister if she would mind asking her mother in law if she would mind getting steamed rice and plain veggies so i could eat something. She texted me “ i guess”. We all know that means she doesnt want to ask her. Was i totally out of line to ask this?? We ended up in a big fight because she said ahe felt uncomfortable asking her.  I told her just explain my disease in a nut shell. I know I could have eaten beforeheand or beought my own food but I thought that I would look rude doing that. I am having an anxiety attack. 

[gluten-free girl 67]

Honestly my family has never really been supportive of my celiac. I am tired of having this disease. It is mentally ruining me. I work as an advice nurse listening to people’s medical issues for 8 hrs a day and i feel like nobody wants to hear about my dosease and how it affects me. 

[pschwab]

Bring your own food is my advice. I don’t think the host will be offended if you explain you have an autoimmune disease and must avoid certain foods. Profusely thank her for the invitation, gush about her house, gloss over the food stuff like it’s no big deal and move on doing what you need to to remain healthy. If we don’t focus on the food I think it helps others ignore it too. Dazzle them with your wit and personality because that’s what makes you awesome, not what you can or can’t eat. Make your family remember how lucky they are to have you. Don’t fight over food unless they are actively causing you harm through cross contamination. Do what needs to be done to keep healthy without apology because you aren’t affecting them by watching what you eat and bringing your own food.

[squirmingitch]

  On 3/30/2018 at 2:36 AM, pschwab said:

Bring your own food is my advice. I don’t think the host will be offended if you explain you have an autoimmune disease and must avoid certain foods. Profusely thank her for the invitation, gush about her house, gloss over the food stuff like it’s no big deal and move on doing what you need to to remain healthy. If we don’t focus on the food I think it helps others ignore it too. Dazzle them with your wit and personality because that’s what makes you awesome, not what you can or can’t eat. Make your family remember how lucky they are to have you. Don’t fight over food unless they are actively causing you harm through cross contamination. Do what needs to be done to keep healthy without apology because you aren’t affecting them by watching what you eat and bringing your own food.

Expand Quote  

I could not have said it half as well. 

[gluten-free girl 67]

Thanks. My sister and I just got into a big fight because it makes me upset that she cant ask about getting food I can eat. I am not going. Our fight was deeper than this though. According to her all I talk about is celiac. Not true. Its an exaggeration. I am tired of feeling like I am a burden about requesting to know what’s in the food they make at holidays etc. just done feeling like a burden. 

[tessa25]

I always bring my own food. So I never have to ask what's in the food. My friends joke that they love inviting me to dinner as it doesn't cost anything.

[cyclinglady]

I would not dream of eating anything at someone else’s house and that includes my own mother.  Why?  Because unless they have “walked in your shoes”, they have no idea how to safely prepare gluten-free food.   It can be risky.   I do eat at my Mom’s, but I am there to supervise and assist.  She is open to asking questions.  After five years, she is getting it.  When I arrive, she buys us gluten free food items in advance.  Usually, goodies we normally do not eat, but heck, we are on vacation!  

I would never eat white rice and veggies from an unknown Chinese Restaurant.  

Bring your own food, bring a gluten free dessert (even if it is as simple as ice cream) or snack (chips) and enjoy the people.  But it sounds like you have other issues with your family  beyond gluten free.  Maybe, you do talk about celiac disease too much.  I know I do.  It is a way for me to cope by  educating others either here on Celiac.com or in person.  (I am on a quest to identify the 80% of celiac who are undiagnosed! ?)  Try to ”talk” here on the forum where we are more receptive.  It sounds like your sister is sick of it.  Think of it from her perspective.  

Consider a local celiac group.  I really enjoy meeting “like” people.  

Hang in there.  Your job sounds both rewarding and stressful.  I am sure you are helping so many!  

 

 

[Ennis-TX]

  On 3/30/2018 at 2:50 AM, gluten-free girl 67 said:

Thanks. My sister and I just got into a big fight because it makes me upset that she cant ask about getting food I can eat. I am not going. Our fight was deeper than this though. According to her all I talk about is celiac. Not true. Its an exaggeration. I am tired of feeling like I am a burden about requesting to know what’s in the food they make at holidays etc. just done feeling like a burden. 

Expand Quote  

I talk about it all the time...like to everyone...part of my autsim and other mental issues compound it. But I believe in educating people in this disease, and often by some grace of god the people I feel compelled to go up to at random.....always have some form of dietary issues I can help with..>.> Tends to be people in the gluten free section at stores or looking in ingredient list in confusion

Anyway, I had a whole falling out with my family and this disease years ago, it made me violent, confused and foggy/crazy. I called it Mr. Hyde. I now have patched things up and live on my own...I host meals for my family during holidays and invite everyone over. When I go out or head to others, I meal prep and bring my own in a disposable container, eat before, or bring bars to enjoy.

[gluten-free girl 67]

I tried to point out to my sister i care enough about her that if she had celiac i would have no problem asking the host for a few foods she could eat. Having celiac and making food requests is like taboo in my family. This is how i feel anyway. I would also rather feel included instead of sitting there eating my own food or eating beforehand. The whole thing just blew up in my face because i even thought of asking for two gluten-free things i could eat. 

[Moggy]

When getting glutened means so much pain, tiredness, torturous skin rash and health risks, the only thing you were unreasonable about was risking rice and veg from the Chinese restaurant!

Non celiac people do not get it unless they live with a celiac. They see it as fussing because its not them stuck in a bathroom with horrendous diarrhea and stomach pain, or clawing at their burning itching skin. 

Tell Them in glorious detail about the suffering caused by you getting glutened, and the very nasty health consequences, and if they still don't care, consider your options regarding contact.

I point out I dont follow a food fad, im sick. 

 

[RMJ]

I don’t know what your sister’s relationship with her mother-in-law is, but if not good that might make it hard to request a special food.  I will eat at my brother’s house but we discuss menus and ingredients and I check labels on anything they use.  If I go to parties I just don’t eat.  It was difficult the first time but got much easier after I had done it once or twice.

[gluten-free girl 67]

She has a good relationship with her MIL. I guess I would trust plain steamed rice and steamed veggies, but perhaps I shouldn't. Eating at family gatherings has become very difficult for me. I give up. My sister is recovering from breast cancer and she is saying things like "at least celiac isn't deadly." I think she is feeling sorry for herself. I have tried my best to be there for her but after me asking about the food and explaining my emotions of feeling isolated, she blurted out that I have been "shitty" towards her this whole time ( 1 year) of her going through chemo, radiation, etc. It came out of nowhere. she said that I've called her to discuss my work issues and celiac issues more than asking her how she is feeling. I honestly know she is blowing this all out of proportion. I took her to chemo and was there for her surgery. I live an hour away. She doesn't work, I work 32 hrs a week as an advice nurse listening to people's medical issues for 8 hours. I get 40 calls a day. I have  listened to my sister about her cancer for hours. When I try to talk to her she tends to interrupt. My issue is maybe I didn't call her enough, but i called on average 2-3 times a week...but I tried to also talk about different topics because after being a nurse for 28 years it's exhausting talking about diseases 24/7. my mom also has cancer. I pointed out to my sister that celiac can be deadly. I had 2 miscarriages because of it more than likely...because I had them before I was diagnosed. It's silly because it's like we are comparing diseases. But her comment came out of nowhere. People, even my own family act so rude about food issues. her daughter has a peanut allergy so you would think she would be more sensitive about it. I am not trying to say celiac is worse than cancer, but I am so hurt over her comment that I have been shitty towards her. It's totally wrong. I even stopped talking to one of our cousins because she ignored my sister through her cancer. I took her daughter on trips with us twice because they couldn't go anywhere during chemo. I just can't believe this whole thing happened because I asked for 2 gluten-free dishes. 

[Ennis-TX]

Well as karma goes...celiac is genetic....they will go all denial but they might have it and symptoms or the gene switches on and they will come running to you for how to deal with it...keep that in mind it will give you a smile on the inside. >.>

Celiac can lead to cancer....we have had members die here from cancer caused by celiac damaged and complication....it makes you have higher chances for other auto immune disease if left untreated. I do not mean to down play breast cancer.... I have had relatives with it....but lymphoma, intestinal, and colon cancers....have a much higher chance of killing you and not responding to treatments.

Feel free to come here and vent, sort of a group therapy session lol, must be tough in your line of work, feel free to come here and unwind and let it all out, this is sort of you celiac family on the internet that can understand the hardships your dealing with.

[Johnny55400]

I recently traveled for the first time after having been diagnosed with Celiac (although I have absolutely no symptoms) and  found it quite difficult to find gluten free sandwiches. I think it should be mandatory for restaurants to have at least one gluten free option in their menu. I am fed up to eat salad and fruit. It should not be a problem to have some gluten free bread at hand just in case someone request a gluten free sandwich.

[kareng]

  On 3/30/2018 at 6:11 PM, Johnny55400 said:

I recently traveled for the first time after having been diagnosed with Celiac (although I have absolutely no symptoms) and  found it quite difficult to find gluten free sandwiches. I think it should be mandatory for restaurants to have at least one gluten free option in their menu. I am fed up to eat salad and fruit. It should not be a problem to have some gluten free bread at hand just in case someone request a gluten free sandwich.

Expand Quote  

Unfortunately, it isn't as simple as keeping some gluten-free bread around.  gluten-free bread alone does not make food gluten-free.  They would have to keep the bread frozen, have a dedicated toaster and fresh sandwich ingredients that had not been CC'd.  

[Johnny55400]

  On 3/30/2018 at 6:29 PM, kareng said:

Unfortunately, it isn't as simple as keeping some gluten-free bread around.  gluten-free bread alone does not make food gluten-free.  They would have to keep the bread frozen, have a dedicated toaster and fresh sandwich ingredients that had not been CC'd.  

Expand Quote  

When there is a will there is a way... 

[gluten-free girl 67]

My mom and sister both got tested for Celiac and the don't have it. I had my kids tested too. I'm just the lucky one.

[squirmingitch]

My goodness, the whining! This is our disease. It is up to us to keep ourselves safe by being responsible for our own food whenever & wherever we go. I would never ask someone to get special food for me to have at their house. Taking that one step further by asking someone, even my sister, to ask the hostess if she will get foods specifically for me sounds even more ridiculous. As ridiculous as making it mandatory for restaurants to have one gluten free option in their menu. Talk about feeling like you're entitled!

Why do you people think others are supposed to take care of your food for you? Would you also think that diabetics should be provided insulin when they go to visit people? Should insulin be mandatorily provided at interstate rest stops?

Pretty absurd when you look at it that way isn't it?

[Gemini]

I’m pretty sure I would not even go to someone’s house for Easter dinner if they were serving take out Chinese food, Celiac or not!  I would stay at home and cook myself an awesome meal and be much happier for it!

[Johnny55400]

  On 3/31/2018 at 1:39 AM, squirmingitch said:

My goodness, the whining! This is our disease. It is up to us to keep ourselves safe by being responsible for our own food whenever & wherever we go. I would never ask someone to get special food for me to have at their house. Taking that one step further by asking someone, even my sister, to ask the hostess if she will get foods specifically for me sounds even more ridiculous. As ridiculous as making it mandatory for restaurants to have one gluten free option in their menu. Talk about feeling like you're entitled!

Why do you people think others are supposed to take care of your food for you? Would you also think that diabetics should be provided insulin when they go to visit people? Should insulin be mandatorily provided at interstate rest stops?

Pretty absurd when you look at it that way isn't it?

Expand Quote  

 Where is the whining?There is nothing ridiculous to suggest that restaurants propose one gluten free option in their menu. I traveled in India and China and was able to manage with my diet. There are more and more people following a gluten free diet. The way people will notice some financial interest in this market, and it has already started, you will see some sudden interest to the "poor celiac disease whiners". 

 

[Ennis-TX]

  On 3/31/2018 at 12:31 PM, Johnny55400 said:

 Where is the whining?There is nothing ridiculous to suggest that restaurants propose one gluten free option in their menu. I traveled in India and China and was able to manage with my diet. There are more and more people following a gluten free diet. The way people will notice some financial interest in this market, and it has already started, you will see some sudden interest to the "poor celiac disease whiners". 

 

Expand Quote  

I do not mean to be rude, but are you by chance a "silent Celiac" as in no overly apparent or painful symptoms? I would not trust eating at most restaurants even if they had a "gluten free option". I have worked in restaurants, concessions, and kitchens for over 7 years prior to my dia....I would not trust some standard chain to handle foods in a allergen free manner during rush to avoid "wheat/gluten" They way a standard kitchen handles the stuff and probability of CC with your standard employee is well...quite bad. MY reactions have been so painful, so terrifying I would not chance this type of thing unless I knew the manager, seen how it was done, only certain lines, and before rush. I would rather eat at home or bring my own food this risk that pain and suffering. "Gluten Free Options" be damned in a non gluten free restaurant it's bloody Russian roulette. Many have compared glutenings to salmonella poisoning . This sums it up for me but with a chance of motor control loss, loss of feeling, and brain fog with potential brain damage.

[Moggy]

Whining! Are you kidding me! I guess you dont react to under 20ppm, not really gluten free food, are not stuck in a bathroom in agony with diarrea and vomiting after eating allegedly gluten free food, or because your non gluten free little kid kissed you! I guess you arent crying because despite being ever so careful your dh flared up again and you cant take dapsone. 

Take your whining accusations somewhere else.

I cant even eat rice, no processed foods that is really low not no gluten, and I wouldn't dare eat at any restaurant whatever their claims

When people are suffering so badly how dare you accuse us of whining!

I dont knowingly eat any gluten, but am currently sicker than hell. Too right ill whine, im in agony and cant eat without fear.

Empathy is a great skill to work on.

 

[kareng]

  On 3/31/2018 at 3:29 PM, Moggy said:

Whining! Are you kidding me! I guess you dont react to under 20ppm, not really gluten free food, are not stuck in a bathroom in agony with diarrea and vomiting after eating allegedly gluten free food, or because your non gluten free little kid kissed you! I guess you arent crying because despite being ever so careful your dh flared up again and you cant take dapsone. 

Take your whining accusations somewhere else.

I cant even eat rice, no processed foods that is really low not no gluten, and I wouldn't dare eat at any restaurant whatever their claims

When people are suffering so badly how dare you accuse us of whining!

I dont knowingly eat any gluten, but am currently sicker than hell. Too right ill whine, im in agony and cant eat without fear.

Empathy is a great skill to work on.

 

Expand Quote  

I took squirmy’s comment to mean that we should stop whining that our families or a sandwich shop don’t  feed us safe gluten-free food and take matters into our own hands. Bring our own food, cook or help the family member cook, go to restaurants that have a good understanding of gluten-free ( not expect every place to spend the money and training to provide safe food.

 

so I think you are actually agreeing with Squirmy?  Lol

[GFinDC]

  On 3/31/2018 at 12:31 PM, Johnny55400 said:

 Where is the whining?There is nothing ridiculous to suggest that restaurants propose one gluten free option in their menu. I traveled in India and China and was able to manage with my diet. There are more and more people following a gluten free diet. The way people will notice some financial interest in this market, and it has already started, you will see some sudden interest to the "poor celiac disease whiners". 

 

Expand Quote  

Hi Johnny55400,

There is a group called GIG (Gluten Intolerance Group Open Original Shared Link) that has a certification program for restaurants serving gluten-free foods.  You can even search on their site for restaurants in your area. Open Original Shared Link  It's a pretty small list of certified places to eat though.

There are many restaurants in the USA now that do serve gluten-free food.  Some of them have a separate gluten-free menu even.  It's probably simpler to just search the web for gluten-free restaurants in your area though.

It's also a good idea to link up with a local celiac group on Facebook or whatever.  They usually have info on restaurants that are safe.

Personally, I like whining.  It makes me feel important!

I like Texas Roadhouse for gluten-free eating myself.  But I don't eat out very often.

There is a device called a NIMA sensor that people use to test for gluten in foods.  I don't have one myself, figure I can get along without it.

CVS sells an enzyme called Me+My Gluten Assist that might help a little with minor contamination issues.

Welcome to the forum!

[Johnny55400]

  On 3/31/2018 at 4:26 PM, GFinDC said:

Hi Johnny55400,

There is a group called GIG (Gluten Intolerance Group Open Original Shared Link) that has a certification program for restaurants serving gluten-free foods.  You can even search on their site for restaurants in your area. Open Original Shared Link  It's a pretty small list of certified places to eat though.

There are many restaurants in the USA now that do serve gluten-free food.  Some of them have a separate gluten-free menu even.  It's probably simpler to just search the web for gluten-free restaurants in your area though.

It's also a good idea to link up with a local celiac group on Facebook or whatever.  They usually have info on restaurants that are safe.

Personally, I like whining.  It makes me feel important!

I like Texas Roadhouse for gluten-free eating myself.  But I don't eat out very often.

There is a device called a NIMA sensor that people use to test for gluten in foods.  I don't have one myself, figure I can get along without it.

CVS sells an enzyme called Me+My Gluten Assist that might help a little with minor contamination issues.

Welcome to the forum!

Expand Quote  

Thanks GFinDC. I think it is an excellent start. 40 years ago nothing was done to enhance daily life for disabled people.  Some courageous people fought a lot to improve this unfair conditions and nowadays, physically challenged people can take the bus or travel to most of the public places, which is an outstanding achievement. At a much minor scale, being able to request a non gluten sandwich for instance (with all the safety that goes with it) may seem to be trivial, but the addition of small "plus" in our daily life will allow us to better our life.