No Support...

[Pyro]

*sigh*

I just feel like getting this off of my chest.

College is done, so I'm back home for the break with the news that I'm now/have been celiac and that I need to avoid gluten. Instead of understanding, my mom just tells me that it's all in my head and that the reason I'm always in so much pain is because I eat "weird". I guess eating unprocessed meat, veggies, and nuts is weird somehow. Oh well. That wasn't my problem because she usually doesn't support me anyway, but the thing is she keeps leaving flour everywhere. Or using a glutened knife in the butter, or mayonnaise, or anything else that can be contaminated somehow.

Cookie crumbs on the counter, patches of pancake mix here and there, and just gluten everywhere I go. I even found out that the burgers she had ready to cook were randomly mixed with bread crumbs FOR NO REASON.

Of course I'm in pretty bad shape right now, thanks to being glutened out of my control.

From now on, I'll try really hard to clean the counters, avoid gluten-y areas, use my own pans, and so on but should I have to? I don't understand why she can't just be reasonable and simply putting away the things that are making me sick. Or maybe try to make some dinner that's not drenched in some form of gluten.

Ugh... My stomach hurts so bad right now I can't even think.

[brendygirl]

That is so terrible, Pyro. You deserve to be taken seriously. I go to a support group in my area. Have you looked for one on the boards to see if there's one near you?

I think you are handling it very well, because I think I'd start throwing away all my mom's flour.

You're too old to spank, aren't you? jk

I use spray butter, so no knives go in there.

I also use the jelly that squirts out the top.

[miles2go]

My experience, it took about 2 years for my family to "get it" and they are generally really supportive. For instance, at Thanksgiving a couple of weeks ago, Mom declared that she was making the green-bean casserole anyway, Dad was doing the stuffing outside of the turkey when I asked about the stuffing, my excellent sister-in-law noted the lack of the usual rice dish and Mom asked about how she could make all of the Christmas cookies gluten-free, even though I said I didn't need more than one or two made that way.

*sigh*

They're just family...

Margaret

[ravenwoodglass]

It can be hard when you have to stay with people that just don't get it yet. One thing that might help would be to get a big plastic bin and put nonperishable food items into it and store it in your room. You could even put a setting or two of dishes and in there that you would wash after use and then put back. That will also give you a safe place to store your toaster and a couple of small pots and pans. If your budget and space allows pick up one of those little refrigerators also and stick that in in your room. They will most likely 'get it' in time. Also the genetic nature of the disease and the fact that a parent has been feeding their child 'poison' for so long can lead to some unexpectedly strong feelings of guilt and denial. Hang in there it will get easier to deal with especially as you start to feel better.

[miles2go]

Although if you're going to do this, my mantra is to make as little a deal of it as possible. Like ravenwoodglass said, no parent wants to be reminded that they'd fed their child 'poison' all along.

I do fine when it's just with my parents, but when there's a lot of family involved, it just seems to go down the pooter quickly, even though some of the grandkids have issues, but some folks just aren't there yet.

"Advice is like snow; the softer it falls, the greater it dwells upon, and the deeper it sinks into, the mind." - Samuel Taylor Coleridge

[pastorjaysonn]

My mother was the same way. She just recently decided that Celiac Disease was a "REAL" Disease and not just something that I made up. I am 24 and married! She simply thought that I was just being "weird."

The other day, I made her and my grandmother a gluten-free dinner and she loved it! She said, "how can you eat this with the flour on it..." I told her THEN that I used a mixture of rice, potato starch and tapioca flours...she was floored! Sometimes, it just takes time...

My inlaws have been supportive from the start. They even made the entire family Christmas party last year a gluten-free dinner! Some get it some don't, but the fact of the matter is that if you don't get the support at home, get it somewhere because you will hurt yourself by eating gluten if you don't get the support and start believing that it is in your head, etc.. (from personal experience myself and from many other people I know with Celiac Disease going through the SAME thing) Hang in there!

[Phyllis28]

In ther future you might might want to look at the option of staying at school. I had a part time job in college which prevented me from going home over winter, spring and summer breaks. I was able to make arrangements to stay on campus. During the summer I had to pay rent. I had access to a kitchen so it did not matter that all of the food services were closed.

I hope everything works out.

[tarnalberry]

...

Of course I'm in pretty bad shape right now, thanks to being glutened out of my control.

From now on, I'll try really hard to clean the counters, avoid gluten-y areas, use my own pans, and so on but should I have to? I don't understand why she can't just be reasonable and simply putting away the things that are making me sick....

While it may not seem like it, you mind comfort in figuring out where exactly you *do* have control, and this is one of those places. You have the choice of eating only food you cook in your own pans that you store in your own room prepared with utensils you also store in your own room. If you have nothing but two pans, two wooden spoons, a fork/knife/spoon set, a cutting board, a knife, and a plate, you can survive by making a wide variety of your own food, and you'll be fine.

As for "should you have to"? It's kind of a non-question. There are lots of should's and could's in the world, and quite frankly, they don't matter. You might feel entitled to something, and might have plenty of people agree with you - even most of the world (though plenty of non-gluten-free people might not think so, if they are ignorant of the issue) - but it doesn't matter if you can't get it from your mom. It's mostly a matter of figuring out how work around it. Hopefully *while* you work around it, you can talk to your mom and help her to come around, but you have to safeguard your health in the meantime, regardless of should's.

[GlutenWrangler]

You should randomly mix Ex-Lax in your mom's drink and then see how she feels. It makes me sick when people say it's all in your head.

[loco-ladi]

This reminds me of my mothers famous line " while in my house you sill follow my rules"

so she recently came to visit me for 10 days....... and it came back to haunt her

She ate gluten-free for 10 days got a clue about how it is to live in my world and took back alot of knowledge to my cousin who is a dx'ed celiac (not even close to being gluten-free either... eats hotdog buns cause they "calm her stomach" yeah right...)

I also had a conductor once who had a son who told her years ago he was going gluten-free on drs orders..... she thought it was "all in his head" until that fateful trip to guernsey on a train mith little ole me..... She called him and appologised to him...

eventually your parents will "get it" but it will take time, patience and a small twist of fate that turns them into believers, you just have to wait for it then gloat when they come to apologise to you....

in the meantime do what you can to keep yourself healthy and safe

[Offthegrid]

Might it be that she has symptoms, too, but is in denial?

It does take some time for people to "get it." Sometimes I think it's like when someone goes on a healthy diet, others criticize them because they know they should go on a diet, too?

For now, try to hang in there. You'll also probably want to cook all your own meals or volunteer to cook. You shouldn't have to do it, but it's your health at stake here.

Maybe you could also buy a book on celiac or gluten-free cooking for her to read?

[Ken70]

Don't feel bad my mother is a b#%ch too:) (seriously!)

At Thanksgiving EVERYTHING had gluten in it. On purpose I think. When I wouldn't eat anything she told me my gluten intolerance hadn't been "confirmed".

My father just got his test results back and he is in some real trouble. Her tune is a bit different now but I still suspect she would gluten me on purpose.

Good luck and you are not alone......

[sneezydiva]

Did you get an actual doctor's diagnosis? If you were "lucky" enough to have a diagnosis, perhaps your doctor calling your mother and explaining the situation may be enough to change her tune. People take things better from "authority"

I'm so sorry. I know how it is dealing with skeptical relatives. I keep in mind what my first allergist told my DH and I when I was first diagnosed with evironmental allergies. He said no environmental control was too extreme, it is necesaary for my health. It is the same with gluten. And like eating gluten-free, non-sufferers find it extreme that I won't open my windows in the spring, or have 3 HEPA aircleaners in my house, but it is just what I have to do, so I do it. And eventually my family saw how much it helped, and they got a HEPA aircleaner for the guestroom, and dustmite covers for the guest bed. Hopefully with time, they will be the same way about my diet, and with time, hopefully yours will too.