I Could Just Scream!

[mysecretcurse]

So with thanksgiving and everything I've been trying SO hard to not be difficult for anyone, to not be a hassle or a problem, I've been really full of info and trying to make things as easy as I can for my mom so there can be SOME things I can eat, and I'm cooking things myself as well.

But I'm having major problems with my family NOT understanding celiac and how important the details are and NOT listening (when I've explained this like a thousand times) and every time I end up guilt ridden over it because it's like I'm this big picky A-hole turning down the food they worked so hard for because it's not safe.

This has happened before. A LOT. ANd I'm just FED UP.

Like a few months ago. My grandma says she made something I can eat. Its a cassarole with rice and cheese and some sort of white mushroom sauce. I ask what she used in the sauce and she said cream of mushroom soup. I go look at the can and THERE YOU GO, WHEAT- third ingrediant on the label. And then I'm the jerk because I have to turn down the cassorole my grandma made special for me. Like I'm just being picky or something?!

Then today, my mom was shopping for stuff for us to cook with tomorrow. I am VERY specific that I ONLY can use the McCormick vanilla extracts because I KNOW they are gluten free. Seriously, very specific. So she comes back with some store brand and says "the ingredients are the same vanilla and alcohol". OMG!!!!!!!!!!!!!!!!!!!!!! I explained earlier that mCCormicks alcohol IS GLUTEN FREE and that the ALCOHOL was the problem!

(I could pull my hair out, no it's not her responsibility and yes I should have gone shopping myself, but..why? WHY when I was very specific about the brand?)

SO then tonight, she made some soup, and wanted me to taste it to see if it tasted okay. So I went over all the ingrediants with her, it was mostly whole foods, made from scratch soup. I checked everything. I asked three times if she was sure there was nothing else. SO I have some soup, then I notice a freaking bottle of a mixed seasoning allspice sorta stuff that I know isn't safe sitting out on the counter. In a panic, I ask "wait..you didn't put this in there did you????????" And she nods yes.

Glutened. Again. WHen I asked three damn times if there was anything else. Then of course I get met with the "Little bits can't possibly matter" argument, which I've heard so many times and I'm like a broken record saying trace amounts Do matter for me, so I am freaking out and start crying. It's been two weeks of sickness since my last accidental glutening. Things were just starting to get better..

..this happens EVERY time. EVERY time I am starting to get better. And my mom ended up getting pissed and walking off crying saying why don't I just put a gun to her head.

I WAS NOT trying to make her feel bad for it, I didn't get mad at her, I didn't say it was her fault, it was my fault. I shouldn't trust anyone who doesn't know that gluten is in everything (even though I've said hundreds of times that nothing is safe unless proven safe first). ANd now my mom is crying in the bedroom because I can't eat her F-ing soup.

I'm so sick of this. So sick of it. I don't know what to do anymore.

How do I deal with this? What do I do? I've tried my best to educate my family about celiac disease and it seems I'm either met with disbelief (little bits dont matter mentality) or a sort of feeling like I'm such a damn inconvenience even existing that I should disappear. I've even been told "I don't know how you expect to live like this"

AS IF ITS A CHOICE!!!!!!!!!!????????

Why. Just.. why.

[Lisa]

Take a deep breath.

The alcohol in the vanilla is likely gluten free. No problem there.

The seasoning, has a very high likelihood of being gluten free as well.

Learning the diet is hard and frustrating many times, but you can't expect everyone to do EXACTLY as you would do. I hope you can eat that soup and enjoy the rest of your holiday with your family.

[mysecretcurse]

Thanks but the seasoning is not gluten free.

[dilettantesteph]

I am sorry you are experiencing this. It was somewhat the same for me with my husband. I read a book about dealing with diseases and found denial as one of the stages to acceptance. It helped me to think that he was in denial, not wanting to accept that I had a serious condition rather than the other less positive spins. It got better over time. Now he realizes how sensitive I am, and how careful I have to be. I hope your family comes to accept and better understand over time. Meanwhile, be really careful about what you eat. Maybe just bring your own food. It is terrible being sick all the time while learning what not to eat. It makes it so much harder to deal with everything. I hope you didn't get too much gluten so that you can feel better soon.

[mamaw]

Hello

I'm sorry you are having such a hard time right now. I agree that family is the hardest to make understand. Its been years for me & I know not all of them get it. I now have a sibling that may have celiac. Plus there are four of us at present. I think people do not understand because we all were taught that wheat is the staff of life!!! right...........

I would suggest that after the holiday & things calm down get some literature & share with your Mom. The more she knows the more she will learn. This way it just isn't you telling her she will read for herself.......

For a while I also would make my own food & cart it with me when I go to someone's house to eat.... again this is a pain to do but it is the safe way & still enjoy company of others. I have a bag with me at all times....

I used to get so mad when I had to go somewhere & couldn't eat with others so I always made an excuse & went later after dinner. Then I decided I just would take my own food & match whatever was being served.....I really don't buy into peer pressure any more!

I'm sure you did not mean to hurt your Mom's feelings nor she would want to hurt you. Hugs on both sides are in order...no one wants to lose a child to an illness so I bet she will be willing to learn all she can in the future. A holiday is always a stressful time & then adding no gluten into the picture just makes it a double whammy.

No one can learn all this in a day so try to be patient & understanding while others are trying to figure it out. Hell, not all celiacs have it figured out as yet-- it is alot to asborb.

I never have anyone cook for us nor do I expect them to. Now I do it all & that too gets old but that is the way it has to be....

Now, when there is an office party I take in something really yummy thats gluten-free to share. It has brought many questions that I now can answer to help make them understand.....I also have people asking if their health problem could be coming from a wheat/gluten intolerance!

Dr Peter Green has a good book out & also anew one from Rodale Press from Dr.Liebermen that covers a bunch of autoimmune & allergies type illness. I enjoyed reading both books.

good luck

blessings

mamaw

[DingoGirl]

Frustrating!

But - - NEVER trust anyone else with your food consumption, unless they're really knowledgeable, like, certain kitchen managers or chefs at restaurants. Family can't be expected to know about our stuff!

We really must have the attitude of - taking charge of our own food/bringing our supplies versus - expecting other family members/friends to accommodate us. I mean, they don't live with this, how should they know how to handle it?

The most I ask of my family - and I didn't even ask this year - is to get a gluten-free turkey and not put gravy on it. That part's simple - everything else I do myself. And, this year I'm bringing my own turkey, as I am going to a different place.

We are quite fortunate if other loved ones want to accommodate us but - we should never expect it and, I think if we have the attitude that WE are in charge of our food consumption AT ALL TIMES, we won't be disappointed, or worse, sick.

[curlyfries]

At a family get-together, my mother-in-law made pulled barbeque pork. She checked with me on all the ingredients. Before I got a chance to fix my plate, I caught her serving it onto buns, holding the buns over the meat. She really did mean well. They haven't spent as much time as we have wrapping their minds around the entire concept. Lucky for you your mom is willing to try. Bless her heart. When you're tired of crying, you might as well laugh.

[mysecretcurse]

Hey thanks for responsing, thanksgiving is just such a hard time, this is my first thanksgiving since being officially on the diet (I was in the process of figuring out I had celiac last year around this time and still in denial-bleh) and I'm making my own mashed potatoes, vegetarian gravy, and a vegetable dish. I don't eat meat so that shouldn't be a problem and we already got the McCormick vanilla extract to make pumpkin custard with.

Btw, is turkey NOT gluten free? I noticed you said a gluten free turkey. I've been vegetarian for 3 years so I have never looked into meats but wouldn't meats be gluten free? Do some come with seasonings on them already or something like that? Yikes.

[sbj]

When did they start sneaking gluten into vanilla?

Why not simply NOT eat anything your family makes for awhile? "Just say no." I think it's okay to say, "I'm sorry, but I have gotten sick too many times. It's just easier and safer this way."

[zero]

Your rant was pretty well written. I will suggest that you and your family are trying to maintain the same roles but the circumstances have changed which requires a different relationship. It may have been that "your mother cooks, you eat and all is good" worked before but it won't work now. A change in roles is always difficult. I don't know what the solution is as I haven't gotten in that situation yet. But I do know that I can't expect anyone to learn anything. I can't expect to be able to eat what is placed before me. And I will either have to go hungry or to satisfy myself and make other people feel comfortable make my own food or buy from a restaurant which is safe.

The more knowledge you have about the disease also helps. My response to my sister's, "you can cheat once in a while can't you", is that an eighth of a teaspoon of flour can cause damage to the intestine. Maybe she will remember, maybe not. It will also give you peace of mind should you ingest an ingredient which is not safe. Glutening happens (this should be a bumper sticker).

rob

[lovegrov]

"Btw, is turkey NOT gluten free? I noticed you said a gluten free turkey. I've been vegetarian for 3 years so I have never looked into meats but wouldn't meats be gluten free? Do some come with seasonings on them already or something like that? Yikes."

Turkey is definitely gluten-free UNLESS wheat, rye, or barley is listed in the ingredients. This is required by the USDA.

richard

[mysecretcurse]

Actually my mom never has cooked for me, I've been cooking for myself since I was really young, and I'm 26 years old now, I'm just visiting home for a few months for the holidays before I go travel South East Asia for awhile

My problem is I DO give them knowledge about the disease, often times they don't listen to me. I say that trace amounts have made me sick before and sometimes they say things like "I don't see how thats possible". I don't get it, it doesn't seem like they are calling me a liar, but it doesn't seem like they fully believe me either. But they saw how sick I got after the last time I was glutened (two bites of "guacamole") so maybe seeing will become believing.

It's hard to not eat anything my family makes. It's okay for right now because I live here but when I go out of town and stay with family it gets a lot harder. Because they DO try. They make all this special food for me and every time I have to tell them I can't have it and I feel SO guilty because they look so sad, like me turning it down is somehow not appreciating that they tried when I do tell them I appreciate it.

It's just so hard. I end up having crying fits and wanting to rip my hair out. My big gluten response, besides DH and stomach pains is DEPRESSION and anxiety so I don't react well to getting glutened at all.

But yeah, I'm just gonna have to cook for myself, always. It just is hard sometimes when I go out of town and can't bring all my own groceries.

[luvs2eat]

I often say, "If I don't cook it, I can't eat it." Given that your mom's glutened you w/ random ingredients she FORGETS to tell you are included... I'd adopt my phrase and stick to it.

[rinne]

As someone else said, "a well written rant"!

Lots of good advice given.

I wonder if your family is healthy? In my experience those least willing to "get it" are most in denial about their own digestion. My mother has been ill for 30 years with digestive issues yet will not change her diet and this with two children officially diagnosed with Celiac, two more who have serious digestive issues and me the Lyme/Celiac

It takes time to become at ease with making our health a priority, you'll get there, it will get easier. In the meantime, screaming might help! (Perhaps not in company though, and definitely not during the dinner, as appealing as that might be.)

[AliB]

Although gluten intolerance is not an allergy, sometimes it helps to use that as an analogy - like, "you know how people who are allergic to peanuts can die from just having a fraction of peanut? Although I may not die immediately from a fraction of gluten, my body reacts in a similar way and it can make me very sick and the build-up of damage can lead to horrible diseases like cancer, so that is why I need to avoid any trace of it".

Generally people have seen or heard of incidences of people dying from peanut allergy, so they have a little comprehension of that.

Maybe that might help.

Another thing might be to make out a list of the products that gluten can sometimes masquerade as - like Barley Malt, etc., so your Mum can check things she buys against the list. Also you could have a box of certain things - gravy mix, flavorings, vanilla - items that are more likely to contain gluten - that could be kept in a cupboard for her to specifically use for you when you visit. I have done that with my daughter. Fortunately she is good at figuring it out, but I do keep a few bits at hers, like gluten-free gravy powder, for when we are visiting for meals.

Mine is even more complicated now I am on the SCD, but we cope!

[countrypenny]

Hey,

Sorry to hear you are having such a hard time dealing w/family holiday meals, but did thoroughly enjoy the rant! We all feel that way sometimes, just are not able to articulate it as well.

Since diagnosed I feel that this is "my curse" and it needs to be dealt with in a way that's not going to totally stress me out when invited for meals. I explain briefly issues and say "I will be bringing my own food". This is not open for discussion. I will not be subjected to others telling me that a speck of gluten "is not going to kill you" and this way I do not worry about cross contamination. Nothing I find more irritating than someone saying "I've made YOU something special" only to find out there is either a milk product or gluten somehow in it. I purchased a small red cooler and that is what I take everywhere. Very good friends are used to it and others who don't know me just wonder. I do not feel a need to explain anything to anyone and enjoy feeling safe with my own food.

I hope you can somehow have a wonderful family Thanksgiving. The main thing is the fellowship w/family and friends not whether you eat their food or not.

[quack]

mysecretcurse, couple of things

First

regarding the soup.

I have been wheat-free for ages

but I made chicken soup from scratch the other day and got glutend.

I never thought about the stock-cubes having wheat in them and I am supposed to know what I am doing.

I have just done it that long I forgot.

Old habits are hard to break

second, Poultry labelling.

I am not sure at all if I am correct at all about this..but it is worth thinking about.

If the bird was killed and something,

say a preservative was Added to the carcass that contained wheat,

that would have to be added to the Ingredient List

But,

what if the bird was raised on wheat feed, would that be classed as an additive and listed?

I think not.

Would a bird fed regulaly on wheat actually accumulate the wheat in it's flesh?

I don't know

but..

Certainly if you see a corn-fed chicken, the flesh/fat is bright yellow so it kinda suggests it could be possible.

[Lisa]

Would a bird fed regulaly on wheat actually accumulate the wheat in it's flesh?

NO.

[mysecretcurse]

Sorry to hear you are having such a hard time dealing w/family holiday meals, but did thoroughly enjoy the rant! We all feel that way sometimes, just are not able to articulate it as well.

Thank you, that means a lot to me. I'm a writer, so I get very passionate about expressing myself through words when I'm all riled up.

I appreciate all the responses, I feel much better now. I did get mildly glutened but it wasn't too bad. I got a rash on my chest and hands last night and had some trouble sleeping but my DH didn't get too much worse.

It was definitely a good meal because I cooked almost everything. I was like the head chef and actually, the WHOLE meal was gluten free! All my rantings about gluten being bad inspired my mom to start cutting it out a bit, so she didn't even make bread or anything! All was good. I just have to be really involved in the cooking for christmas to make sure I have another good experience.

[debmidge]

So with thanksgiving and everything I've been trying SO hard to not be difficult for anyone, to not be a hassle or a problem, I've been really full of info and trying to make things as easy as I can for my mom so there can be SOME things I can eat, and I'm cooking things myself as well.

But I'm having major problems with my family NOT understanding celiac and how important the details are and NOT listening (when I've explained this like a thousand times) and every time I end up guilt ridden over it because it's like I'm this big picky A-hole turning down the food they worked so hard for because it's not safe.

This has happened before. A LOT. ANd I'm just FED UP.

Like a few months ago. My grandma says she made something I can eat. Its a cassarole with rice and cheese and some sort of white mushroom sauce. I ask what she used in the sauce and she said cream of mushroom soup. I go look at the can and THERE YOU GO, WHEAT- third ingrediant on the label. And then I'm the jerk because I have to turn down the cassorole my grandma made special for me. Like I'm just being picky or something?!

Then today, my mom was shopping for stuff for us to cook with tomorrow. I am VERY specific that I ONLY can use the McCormick vanilla extracts because I KNOW they are gluten free. Seriously, very specific. So she comes back with some store brand and says "the ingredients are the same vanilla and alcohol". OMG!!!!!!!!!!!!!!!!!!!!!! I explained earlier that mCCormicks alcohol IS GLUTEN FREE and that the ALCOHOL was the problem!

(I could pull my hair out, no it's not her responsibility and yes I should have gone shopping myself, but..why? WHY when I was very specific about the brand?)

SO then tonight, she made some soup, and wanted me to taste it to see if it tasted okay. So I went over all the ingrediants with her, it was mostly whole foods, made from scratch soup. I checked everything. I asked three times if she was sure there was nothing else. SO I have some soup, then I notice a freaking bottle of a mixed seasoning allspice sorta stuff that I know isn't safe sitting out on the counter. In a panic, I ask "wait..you didn't put this in there did you????????" And she nods yes.

Glutened. Again. WHen I asked three damn times if there was anything else. Then of course I get met with the "Little bits can't possibly matter" argument, which I've heard so many times and I'm like a broken record saying trace amounts Do matter for me, so I am freaking out and start crying. It's been two weeks of sickness since my last accidental glutening. Things were just starting to get better..

..this happens EVERY time. EVERY time I am starting to get better. And my mom ended up getting pissed and walking off crying saying why don't I just put a gun to her head.

I WAS NOT trying to make her feel bad for it, I didn't get mad at her, I didn't say it was her fault, it was my fault. I shouldn't trust anyone who doesn't know that gluten is in everything (even though I've said hundreds of times that nothing is safe unless proven safe first). ANd now my mom is crying in the bedroom because I can't eat her F-ing soup.

I'm so sick of this. So sick of it. I don't know what to do anymore.

How do I deal with this? What do I do? I've tried my best to educate my family about celiac disease and it seems I'm either met with disbelief (little bits dont matter mentality) or a sort of feeling like I'm such a damn inconvenience even existing that I should disappear. I've even been told "I don't know how you expect to live like this"

AS IF ITS A CHOICE!!!!!!!!!!????????

Why. Just.. why.

I have an explanation to offer.....no it's not my philosophy, but it's the only conclusion I

can come up with is: close relatives could be in denial about your disease. Or

could be testing you to see if you "really" react to gluten, as sick as that sounds.

These are 2 things which my husband has gone through with his family and his

solution was not to accept meals from them, and that was very difficult for him to

accept. The 3rd thing that my husband is going through (not what I see with your

situation) is that his relatives stopped caring and prepare the foods with regular

gluten ingredients and no longer ask if there's anything he can have. He

recently had this problem with his own sister's VERY. very informal wedding 'reception'

(it was at his mother's apartment -the bride wore jean shorts - she never wanted a

white gown & the whole to-do. A local official came to the house to perform the

ceremony) we were not involved in the planning nor asked to be involved (and neither was his mother) and no one was asking any questions about his diet (it is well known to his

sister & her friends that he has a "weird diet) and he forbid me to "pipe up"

he wanted to sit back just to see

what side of the fence his sister went on with this one.

Needless to say they served sandwiches and potato salads

which he could not have. That spoke volumes to him - as if he didn't count.

So you have to ask if it's simple denial, denial that a parent might have when they

see a child of theirs have a strange disease which affects their entire life? Or, is it

maliciousness? Your family sounds like they are in denial - as if they cannot

believe their ears that you can't eat wheat and that their favorite foods are off

limits to you.