[MJS]

I was diagnosed a little under a year ago and my mom still doesn't understand what celiac disease entails. She's always trying to get me to eat foods with "just a little bit" of flour in them, but I know that I shouldn't. She gets angry and says that it's no big deal, because smalls amounts have minimal effects. Lately I've been eating food with a little gluten when she insists just because it's easier.

How do I handle her? My dad just tells me to work it out, and I need to make her understand my situation.

[tarnalberry]

If you can't cook your own food, then you need to call your doctor and have him/her talk to your mom. You can NOT eat small amounts of gluten - you'll continue to damage your intestines and not heal.

If you can cook your own food, then you don't need to make her understand at all, you just need to stick to your guns and say no (and then cook your own food). Understanding on her part is not necessary, she just has to respect your decision, and you just have to have the backbone to stick with it.

[Generic]

I would print out some facts about celiac and the gluten free diet. About how it is required that you be 100% gluten free. Also print out the fabulously horrible things that can happen as a result if you are not 100% gluten-free. Such as diabetes, other autoimmune diseases, and my fav- stomach cancer. Have her read them. I hope that helps.

[Phyllis28]

In addition to the other posters good advice:

You could help your mom find alternative gluten free flour to use in the meals with a little bit of flour. If you post the meal or receipe your mom wants to make on this site, there are plenty of people who can suggest a substitute flour.

With people who say "A little won't hurt" and are persistant about it, I only have to explain in graphic detail what a little gluten will do to me and they usually get the point.

You might also consider getting in contact with the nearest support group. Ask mom and dad to attend meetings with you.

[Megz]

Hey Hun, good luck with your mum.

The best way to get people to understand how bad gluten is for you is to compare it poison. That worked with my little sister, people understand the word 'poison ' better than 'cross-contamination'. Unfortunately we get just as sick off of cross-contamination as we do off of a whole loaf of bread so it's important for her to see that. Make sure you offer her facts, but if she's not interested in looking Celiacs' up and finding out information then you need to be prepared to fend for yourself.

Good Luck
Megs

[Phyllis28]

Bringing this back to the top so more suggestions can be added for this teenager.

[Nantzie]

Sorry you're going through this. For some reason this is a common reaction among family and friends. No idea why.

It sounds like you're still living at home. If I were you, I'd call the doctor's office myself and tell them that your mom doesn't seem to be taking it as seriously as she should. A lot of the time people think this is like diabetes where a small amount can usually be tolerated. She may also be having her own internal freak-out denial thing because finding out that your child has a serious illness can be terrifying. Either way, she needs to do what is necessary for your health.

If she needs some convincing, here are a couple informational brochures from a couple of the celiac organizations.

From www.celiac.org -

http://www.celiac.org/downloads/Quick%20St...NAL%2010_06.pdf


From www.csaceliacs.org -

http://www.csaceliac...c_treatment.php


Hope that helps.

Nancy

[MJS]

Thanks so much for all of your advice.

I'm trying to make my mom understand, and I'll certainly use some, if not all, of the suggestions here. I don't think my mom's in denial. At least I hope not. She just doesn't seem to think of the consequences or fully comprehend the extent of her actions. Sometimes all it takes is to remind her of the pain that I used to go through, or of the results that could happen if we're not careful. I haven't had gluten in 4 months, though, and I think I'm on the road to recovery.

Oh, and yes I still live at home because I'm only 15.

Thanks again everyone for the help.

[Liz92]

ya, my mom for like the first two years was always doing things like that, but luckily my dad is celiac so theres always food to eat that gluten-free, so After a while my mom gave up. just tick to it, be strong!!! she'll probably stop after a bit. but don't go hungry.

[Nantzie]

Let her know also that this message board is here for her too. We have a friends and family section where she can come to get support as well. It can be mind-boggling to go through when you are the one who is getting all the symptoms, much less when you have no way to know how it feels.

I had been gluten-free for about six months when my kids went gluten free, and I was surprised how hard it was for me. I was so sad for some reason. Even though I'm so upbeat when it comes to being gluten-free in my own life. When it was my kids, it just kicked me flat.

If my kids had been diagnosed with this and I wasn't, I probably would still not really have half a clue of what they were going through, and how little of a sacrifice being gluten free is when compared to how I feel when I eat gluten.

However your mom decides to deal with this, we're here for you. Even us old people.



Nancy

[Dollshousegirl]

I have just found this forum , I live in the UK, and my 13 year old daughter has recently been diagnosed about 5 weeks ago.
I just wanted to say i feel so sad for you not having your mums support, and i hope your mum can come to terms with your diet.
I have been completly invovled in changing Sara's diet, right down to the fact that I never went in the kitchen and if i did it was to cook convience foods or dish out the take aways, all that has gone now and i can't beleive myself sometimes, that i have taken up cooking with a passion.

talking about family, the other members of my family her brother James who is 18, her sister Hollie is 15 and her dad, are not really getting into the spirit of things.
They still insist on getting takeways etc, infact her sister and brother where teasing her with a meal she always loved to eat, I had cooked for her and she was happy with what she had, and i had cooked pork char sui and rice. (we use soy sauce and yellow bean sauce) and they started to tease her with it . dad dosen't tease her(if he did he'd know about it) but he will still eat stuff in front of her

I had gone out and found out about this afterwards.

but I am really impressed though with how she is coping with things and her sheer deteminination when there is something screaminmg at her to eat it is amazing , there is stuff she likes to eat and can't have, but we are being mega positive and weighing the good up against the bad, (and cooking together) that has been fun, i need to prepare her for when she leaves home so needs to know what she can cook that is good for her

[Youngceliac16]

I completely understand! My mom is usually pretty good, but when I don't want to eat something because of doubt that it has gluten in it, she starts yelling at me for overreacting! It's not our fault that we don't want to get sick!

[nikky]

Youngceliac16, on Dec 21 2008, 05:43 AM, said:

I completely understand! My mom is usually pretty good, but when I don't want to eat something because of doubt that it has gluten in it, she starts yelling at me for overreacting! It's not our fault that we don't want to get sick!

never had this problem with my mom... infact totaly the opposite, she's really supportive and so are the rest of my family. its my freinds that are the problem for me.

As for getting your mom to understand, print out facts, get her to look here and/or call your dr and get him to talk to her, she needs to understand that she is going to make you seriously ill if she carries on the way she is.


dollshousegirl : im 15 and i live in the UK too, my fave brands are Juvela (www.juvela.co.uk) and glutafin (www.glutafin.co.uk), i also like DS (dietary specials) and trufree. Good stores are Asda, tesco and sainsbury's ..M&S have a good range but are expensive. The co-op (http://www.co-operative.coop/) are also ok. Oh yea... dont get DS spagetti.. it tastes like dish water! Hope that helps. Let me know if you want any more tips. Also, if you want i'll give you my msn and myspace so sarah can chat if she wants to.