Help! I'm Scared...

[Bravie]

Sorry this is gonna be kinda long. I am 20 years old and I was diagnosed with celiac disease in april of this year. I was instructed to follow a gluten free diet from then on out. My life has taken a complete stand still since I was diagnosed. I was supposed to go to college last spring but was too sick. This disease has ruined my life.

My family, especially my mom, aren't very supportive of my issue and think that the doctor was crazy. So, i've been going gluten free since the day I was diagnosed, but i've had alot of slip ups and CC since then (I normally prepare my own food but sometimes my mom would make me vegetables or somehting.) It's occured to me that everytime I eat my mother's cooking (when she makes something gluten free) I get sick...And when this happens, she tries to pin all of the blame on me for having such a complicating disease...She thinks im a physco.

So one day, about 2 weeks ago, I started to feel like maybe all of this was my fault. So out of frustration, I at a slice of pizza (from pizza hut). Usually when I accidently eat gluten, my skin breaks out and itches for a couple weeks. As I learn more and more about celiac disease, it scares me. I hear of all this malabsorbtion and all the disease that people with celiac disease are prone to getting. I have alot of trouble gaining weight. I'm down to 108lbs and I eat like a horse. I fear that I may be suffering from malabsorbtion...I don't feel fatigue like I used to before going gluten free and I don't have diarreah and stomach cramps much anymore either. So basically, I could tell you that I feel atleast almost completely back to normal except for the fact that my back itches from the pizza and slight gas :x.

My main concern is though, the fact that I live in this house, where absolutely noone is supportive of me, everyone treats me like im some sort of alien that needs to be quarenteened, and that half the time I am ignored when I complain about a symptom. I have all of my gluten free food in safe compartments of the fridge and the cupboard. However, my main concern is cross contamination from dishes...I wash the dishes thouroghly every single day. I read on the internet somewhere that you need dedicated dishes and pots. But i'm not rich. I don't make alot of money from my job to be buying separate pots and pans. And this house is tiny. Even if I did buy new things, I don't know where I would put them.

I'm doing the best that I can do, and I see alot of improvements in my health. But it would be a shame if I got sick just because my family doesn't want to be careful...I'm really depressed because I feel like I have noone to back me up in all of this. All of my friends don't want to hang out with me because I can't eat 'normal food' like everyone else. This disease has just altered my way of living entirely.

Finally getting to my questions. My questions are, If I stick to a gluten free diet, will I still be at risk for all of those illnesses like tuberculosis and stuff? How long can it take for someone to get back to normal with a gluten free diet? I've been doing this for about 4 months and i'm thinking that the fact that i've been contaminated a few times, maybe that could be why i'm feeling 90% better instead of 100%. And what can I do to make my family treat me normally and take precautions in the kitchen without making a big fuss? How do I convince everyone that i'm not crazy or paranoyed, and this is a real problem and that it's not all in my head? (People think i'm making this all up because back in highschool, I suffered from alot of phycological problems even though I got better from counceling and antidepressants).

[Lisa]

Hey Bravie:

Always remember, you are not alone. We number 15,000 people here on this site and we have all been where you are. This is the best place you can come for information and support.

I know how hard it can be for family not to be supportive and especially your mother. That must be hard to deal with.

Celiac CAN be very overwhelming in the beginning. But it is very do able even in a shared household. You seen to be doing well under the circumstances. Continue to do the best you can and look forward to the time that you can feel 100%.

On a side note, many here have been on antidepressants for some time and now that they are gluten free, the need no longer exists.

If you have any need for support or just want to vent, there are a lot of really great people here.

[Eriella]

Hello,

First of all, I am sorry you are having such a hard time. There are some people who are wonderful about this and others who aren't. Some things which might help are watching/showing your parents these:

They give a good overview. Sometimes it is just is other people saying it. If you are 100% gluten free and have healed, your chances of having those scary illnesses will be the same as those without Celiac.

I have been gluten free since April and I am still not 100% normal. It takes time and being really careful.

To get your parents to get it may be your doctor talking to them. It could also be you needed to move out. Also, do the cooking for everyone and you can take the precautions yourself.

Unfortunately, your past tends to come back to bite you. Just do your best to not make it a big deal, just a food thing that you need to do, and people seem to take it in stride. I am not saying to be careless, but instead just don't make it their problem. Your friends are going for dinner, tell them that you will meet them for drinks, but not eat. If you are sick, simply say, I ate something so my stomach is off. Also, DON'T CHEAT. If you are willing to cheat, for whatever reason, it shows others that you don't take it seriously. If you don't take it seriously, how do you expect them to? It is harsh, but true.

If you have any questions, please PM me.

[kbtoyssni]

I'm sorry you're in such a tough situation. I wonder why your mother is being so resistant to this? Is it that she doesn't have enough information about the disease? That she's in denial (maybe because she feels guilty that she "gave" it to you?) Does she think that you being gluten-free in her house is going to make mealtime so much more difficult, and it's too hard to deal with? I don't know your mother, but would it help to get her more information about the disease? To educate her about how the diet isn't that hard and you won't be deprived (after you get through the learning curve!) To cook with her to show her how it can be easy and tasty? NoGluGirl also lives with her very unsupportive parents so you might want to PM her and ask about things she's tried.

If you are on a gluten-free diet, you won't be at risk of further complications, but if you get enough cross contamination then you're still going to have intestinal damage. As for pans, you're probably fine using pans that are used for gluten as long as they're washed well. That's assuming they're not scratched up and could have hidden gluten lurking in the cracks.

I'm lucky to have fabulous friends. I try to bring along gluten-free treats whenever we get together. They're all wonderfully accommodating and they all know enough now about safe brands and contamination that I trust them to cook for me. It might just be a matter of showing them that your life is not over and you can still eat plenty of "normal", tasty food. Try to steer them towards safe restaurants or activities that don't revolve around food like movies or outdoor activities. I go out to eat a lot and bring my own food. For me it's about the people and the social aspect, I could care less about what I'm eating. Everyone still invites me regardless of where we're going. I could see people not inviting me if they were going out for pizza or something, but since I always bring my own stuff and don't complain if we go to a gluten restaurant, I always come along.

[Bravie]

I'm trying really hard at this diet. It seems like no matter how much I do, i still somehow get contaminated...I'm seriously gonna try to get a better job and move out because as long as i'm living with my family, it's just not gonna work. I want my life back and I want to live as long as possible. I'm only 20 years old and I don't want my life to be cut short.

[Mango04]

Finally getting to my questions. My questions are, If I stick to a gluten free diet, will I still be at risk for all of those illnesses like tuberculosis and stuff? How long can it take for someone to get back to normal with a gluten free diet? I've been doing this for about 4 months and i'm thinking that the fact that i've been contaminated a few times, maybe that could be why i'm feeling 90% better instead of 100%. And what can I do to make my family treat me normally and take precautions in the kitchen without making a big fuss? How do I convince everyone that i'm not crazy or paranoyed, and this is a real problem and that it's not all in my head? (People think i'm making this all up because back in highschool, I suffered from alot of phycological problems even though I got better from counceling and antidepressants).

If you stick to a gluten-free diet you should greatly lessen your risk of facing those complications.

It sounds like you're well on your way to becoming 100% better...just give it a little more time. It takes some people several months. Don't worry about every accidental glutening setting you back. Just do the best you can to avoid getting contaminated.

I would stick to preparing your own food while you live with your parents. If you take reasonable precautions agains cc, you should be fine. Maybe head to Ikea (or TJMaxx, or Target) and get a couple cheap pots and pans (they can be really cheap). Cook your own food and stick to simple stuff. I've had shared kitchens in the past and didn't buy more then one or two of my own pots and pans, just didn't use the toaster, and was careful about keeping surfaces that touched my food clean. It worked out. I hope it works out for you too

[gfpaperdoll]

Please contact your local support group. My group also has a dining out group, that is nice. You will meet a bunch of people that know what you are going through. Maybe the director of your group could talk with your mom. Would your mom go to a meeting? Or if you call the group director she or someone else might meet with you & your mom.

Not that all the peole on this board are not here to help you, but you know that understanding hug & in person conversation - is priceless...

re previous neuro issues, most of us have been there, most people now know that gluten (&dairy) can cause neuro symptoms, including depression. So try not to worry & just take it one day at a time. I find that taking B12 every day helps me a lot...

Is your mom the type of person that will read a book? You could get at the library a few such as Gluten Free for Dummies, Dangerous Grains, Celiac Disease a Hidden Epidemic. You might want to read a couple of these yourself...

[Bravie]

Is your mom the type of person that will read a book? You could get at the library a few such as Gluten Free for Dummies, Dangerous Grains, Celiac Disease a Hidden Epidemic. You might want to read a couple of these yourself...

My mom isn't much of a reader or a listener. If I handed her a book about Celiac disease, she wouldn't read it. If someone talked to her one on one about celiac disease, she wouldn't care to listen basically. She wants to believe that everyone in the family is in perfect shape and noone can get sick, and if you get sick, it's because you did something to make yourself sick (my brother has Chrone's disease by the way. She blamed him for getting the illness just like she's blaming me for getting sick with celiac disease.)

[darkangel]

Wow. Sounds like the sooner you can move out and get away from her toxic attitude, the better. She should be ashamed of herself.

[Lisa]

Sounds like your mother is in denial herself. None of this is something she has caused. Many of us a genetically susseptible to many things and in my case itis Celiac. I don't blame my parents and if my children someday are diagnosed with Celiac, I would do my best to help them adjust to whatever their needs may be.

Kindly remind you mother, that there are no perfect children... physically, mentally, socially or intellectually. But you are her child with all the good and the bad.

[confusedks]

I can understand the friends part of this. I am in high school and people aren't very supportive. It is difficult, but most of my friends have started to slowly come around. They at first thought all the food I was eating was gross, but it just wasn't bolgna on wonderbread! SO WHAT!!! Hang in there, and definitely get into a support group. It is very helpful. You can PM me if you want for support.

Kassandra

HANG IN THERE!! It WILL get easier.

[Bravie]

I honestly don't know what to do atm...I don't know if my soap and hair products have gluten in them. I have really difficult to manage hair and Alberto VO5 is the only product that works in my hair. Seriously. I heard that if you wash your hands after using lotion and shampoo, its ok...But idk about my soap. This whole thing is just driving me insane...My life is hell. I wanna just give up living sometimes. First, I have to worry about what I eat. Then I have to worry about soap, shampoo, and lotion. I don't have enough money for this kind of lifestyle.

[NoGluGirl]

Sorry this is gonna be kinda long. I am 20 years old and I was diagnosed with celiac disease in april of this year. I was instructed to follow a gluten free diet from then on out. My life has taken a complete stand still since I was diagnosed. I was supposed to go to college last spring but was too sick. This disease has ruined my life.

My family, especially my mom, aren't very supportive of my issue and think that the doctor was crazy. So, i've been going gluten free since the day I was diagnosed, but i've had alot of slip ups and CC since then (I normally prepare my own food but sometimes my mom would make me vegetables or somehting.) It's occured to me that everytime I eat my mother's cooking (when she makes something gluten free) I get sick...And when this happens, she tries to pin all of the blame on me for having such a complicating disease...She thinks im a physco.

So one day, about 2 weeks ago, I started to feel like maybe all of this was my fault. So out of frustration, I at a slice of pizza (from pizza hut). Usually when I accidently eat gluten, my skin breaks out and itches for a couple weeks. As I learn more and more about celiac disease, it scares me. I hear of all this malabsorbtion and all the disease that people with celiac disease are prone to getting. I have alot of trouble gaining weight. I'm down to 108lbs and I eat like a horse. I fear that I may be suffering from malabsorbtion...I don't feel fatigue like I used to before going gluten free and I don't have diarreah and stomach cramps much anymore either. So basically, I could tell you that I feel atleast almost completely back to normal except for the fact that my back itches from the pizza and slight gas :x.

My main concern is though, the fact that I live in this house, where absolutely noone is supportive of me, everyone treats me like im some sort of alien that needs to be quarenteened, and that half the time I am ignored when I complain about a symptom. I have all of my gluten free food in safe compartments of the fridge and the cupboard. However, my main concern is cross contamination from dishes...I wash the dishes thouroghly every single day. I read on the internet somewhere that you need dedicated dishes and pots. But i'm not rich. I don't make alot of money from my job to be buying separate pots and pans. And this house is tiny. Even if I did buy new things, I don't know where I would put them.

I'm doing the best that I can do, and I see alot of improvements in my health. But it would be a shame if I got sick just because my family doesn't want to be careful...I'm really depressed because I feel like I have noone to back me up in all of this. All of my friends don't want to hang out with me because I can't eat 'normal food' like everyone else. This disease has just altered my way of living entirely.

Finally getting to my questions. My questions are, If I stick to a gluten free diet, will I still be at risk for all of those illnesses like tuberculosis and stuff? How long can it take for someone to get back to normal with a gluten free diet? I've been doing this for about 4 months and i'm thinking that the fact that i've been contaminated a few times, maybe that could be why i'm feeling 90% better instead of 100%. And what can I do to make my family treat me normally and take precautions in the kitchen without making a big fuss? How do I convince everyone that i'm not crazy or paranoyed, and this is a real problem and that it's not all in my head? (People think i'm making this all up because back in highschool, I suffered from alot of phycological problems even though I got better from counceling and antidepressants).

Dear Bravie,

I know exactly how you feel! My parents are the same way! I am stuck at home from still being sick, because I may have other things on top of Celiac, like Lyme. They complain I should go out and get a job, but refuse to be careful with crumbs! Sharing a kitchen has gotten me glutened on many occaisions. I have a very violent reaction, where I suddenly break out in a sweat, get terribly nauseated, start shaking very hard and sometimes my hands even start going numb, I have to have a bowel movement immediately, and if I do not get a Promethazine down fast enough, will get the dry heaves so hard that it feels like my insides are emploding. Naturally, my parents just whine that they do not want to go downstairs to go to the bathroom, and want me out of there.

We should not have to suffer because the people we live with are selfish or lazy. I was doped up on anti-depressants as a teenager, and forced to go to psychotherapy and counseling. Nothing did any good. I lose my gallbladder at your age. I am 24 now. I had problems from birth. I used to spit up every formula they tried as an infant, and at three weeks old was placed on 2 percent milk.

We have nowhere to put anything either. Our house is not that small, just loaded with stuff. I am the only one who does dishes, and half the time, laundry of any kind. I clean out the fridge. Other people in my family think I am just this lazy, spoiled princess that gets everything handed to her, and make it sound like I am a lousy person because I am angry with my parents. My feelings are justified, as are yours.

The cookware is a complicated situation. However, the good thing is, I found a stainless steel set at Wal-Mart that was really inexpensive. It has a skillet, Dutch over with lid, and two saucepans with lids. The set is only $22.88. I got it after making a little money at a friend of the family's yardsale. The brand is Tramontina. Utensils are relatively inexpensive. The wooden ones are cheapest, but once contaminated, you cannot use them again, because gluten particles can get stuck within the grooves of the wood. I would get a metal spatula and large spoon at least. Plastic is another option.

Also, to welcome you to the forum, I have a little present for you! I have a list that should really help. This is overwhelming. I went through this with myself eleven months ago. You spend most of your day cooking and cleaning obsessively. The rest you are on the phone with reps from companies trying to find out what is safe. I decided to save you the trouble!

1. There are a number of things in the regular grocery that are safe. Some things are labeled already. Wal-Mart's Great Value brand has numerous things you can eat.

2. For the love of God use Coupons on items you are allowed to eat. People can get them and print them out online even. Call some of the local stores and ask if they accept online coupons.

3. Check the ads online and in the newspaper. You would be surprised how many people do not do this.

4. Some items like rice flour and rice noodles are safe to buy at the Chinese or oriental market. The merchants are more than happy to help you if you cannot read the label.

Now, here is my list of great things to get you started:

Condiments:

Smart Balance Margarine*

Crisco Shortening

Crisco Oil

Pompeiian Olive Oil

Great Value soy sauce

Heinz Ketchup

Lea & Perrins Worchestershire Sauce (all Lea & Perrins Products are safe)

Sweet Baby Ray's Barbecue Sauce

Kraft French Fat-Free Salad Dressing

Kraft Thousand Island Fat-Free Salad Dressing

Pace Picante Sauce

Ortega Salsa

All Classico Red and *White sauces

All Jif Peanut Butters including Smooth Sensations

Welch's Grape Jelly

Cool Whip*

Philadelphia Cream Cheese*

Miracle Whip

Daisy Sour Cream (fat-free, low-fat, regular)*

Snack Foods:

Utz Potato Chips (Found at Sam

[Bravie]

Thank you so much for the list NoGlugirl. You must know exactly how I feel then. Everyone calling you spoiled and lazy when you're really just sick and need some support. I have gotten 0 support since I was first diagnosed. That was about 5 months ago.

I'm thinking about buying some new pots and pans because they're not guaranteed to be fully clean due to self-centered, lazy people in this house. I'm just sick and tired of getting glutened. I can count on both hands how many times i've been glutened during the 5 months of this diet. about 8 times in total.

I'm thinking about buying a new tooth brush, a stainless steel set, and some other things...I would like to clean the fridge and the cupboard but my mom won't let me. She thinks it's weird and unnecessary. So I need to get out of here asap.

One more question. Does anyone know the status of wesson canola oil? I know that's random. I read the ingrediants and it just says pure canola oil. It's a conAgra product so...

[NoGluGirl]

Thank you so much for the list NoGlugirl. You must know exactly how I feel then. Everyone calling you spoiled and lazy when you're really just sick and need some support. I have gotten 0 support since I was first diagnosed. That was about 5 months ago.

I'm thinking about buying some new pots and pans because they're not guaranteed to be fully clean due to self-centered, lazy people in this house. I'm just sick and tired of getting glutened. I can count on both hands how many times i've been glutened during the 5 months of this diet. about 8 times in total.

I'm thinking about buying a new tooth brush, a stainless steel set, and some other things...I would like to clean the fridge and the cupboard but my mom won't let me. She thinks it's weird and unnecessary. So I need to get out of here asap.

One more question. Does anyone know the status of wesson canola oil? I know that's random. I read the ingrediants and it just says pure canola oil. It's a conAgra product so...

Dear Bravie,

Are you sure we are not siblings? It sure seems like we have the same parents. Zero support definitely makes this hard. However, our parents probably have us this disease. So, at least one of them probably has it. They refuse to accept this, and if they want to have Diabetes, Cancer, and all of the other problems Celiac causes when left untreated, fine. The catch is, they will get no sympathy from me, because I tried to tell them!

I have been gluten-free for nearly a year. My anniversary will be the 15th! I am going to celebrate with a gluten-free cake. In case you need to know where to get some great gluten-free cake, go to www.choclat.com where they sell safe dairy-free, gluten-free chocolate. The cake mixes are excellent! Get one of each! There is a minimum order requirement, but considering how good the cakes are, you will want at least three!

You are more than welcome for the list! I want to make this as easy as I can for others. When I first went gluten-free, I thoroughly exhausted myself cooking and cleaning obsessively. You just cannot keep that up! There is not enough time and energy in a day!

A new toothbrush might be a good idea. Also, I make sure no one glutens mine. I actually put it in my room in a cup if necessary. My mother wears face powder that might contain gluten, and people spray hairspray that might have it. Your toothbrush can easily become an object you could get ill from. I have been using Biotene mouthwash. It is gluten and lactose free!

The cookware is something that can frustrate you. I got you covered! Go to Open Original Shared Link and view this set. This is a nice basic set for a good price! I got this set. You need to have some water in the bottom to prevent sticking, but it is worth the extra effort. I will not use aluminum due to hearing about a connection to Alzheimer's and aluminum poisoning.

ConAgra is a good company. They label items clearly. Smart Balance is one of their products. Note that is on the list I gave you. You could go with Wal-Mart's Great Value canola oil if you prefer. It will be less expensive, and I believe it is labeled gluten-free.

Also, I have been having to go to great lengths to avoid cc. They are well worth it, though. One thing that made it easier is keeping my pots and pans out of the kitchen. Maybe you could get a Rubbermaid tub and store your cookware and utensils in that. They are airtight. No gluten will get on them! You may even want to keep it in your room if need be. I am going to start cooking all of my food for the week in one day over several hours. The night before will be prep time. An appliance that makes things a lot easier is the Magic Bullet. You can use it for many things. It is about $60 at Kohl's. Have your own dish rags and sponges, too.

Sincerely,

NoGluGirl