Recently Diagnosed. Help!

[NatZag]

I am 18 years old and I was just diagnosed with celiacs three weeks ago. I have been doing really well but my family isn't exactly 100% on board with my food. My brother won't eat the food just because its gluten-free and my mom still makes all the food that i love but can't eat anymore. my boyfriend is my main supporter but it's effecting our relationship because i've been so unhappy and end up going to him to cry about everything when he already has enough stress with school. i was wondering how everyone learned to cope with not being able to have the foods they love. I'm having a hard time coping i think because i don't know anyone else with celiacs so its hard for my friends and family to understand the pain and emotions I'm going through when i have to explain it to them.

and advice is welcome. i need to stop letting celiacs define who i am. I'm too young to have a definition.

[eatmeat4good]

This is a really big change for you. Give yourself some time to adjust. I'm glad your boyfriend is supportive of you. I kind of want to say it is ok to be obsessed with Celiac and gluten for a while so you can really understand how to deal with the disease and then when you are good at it, it won't have to define who you are. It will just be a part of you and no big deal. It has taken me a year to get to that point. I have been obsessed with Celiac.com, Celiac, Gluten, Wheat, and the medical literature about it. Just now coming to terms with making it just a "part" of who I am. So I think your reaction is normal and it is very stressful to make so many changes at once. Hang in there. Sounds like you mom cares about you and she must be doing a good job of avoiding cross contamination if you haven't been getting sick. Missing your favorite foods is hard. But many people say there is a gluten-free substitute for every gluteny food you like except filo dough and croissants. Those are hard to replace. Maybe you will get interested in baking and come up with some good things to eat that way. It is different learning to find new ways to get your treats you once loved...but it IS possible. Read as much as you can and ask questions here. It sounds like you are doing a fantastic job of sticking to the diet in the face of so much temptation. You must be really strong and that will work in your favor. I found a pen pal on Celiac.com and it helped me sooooo much. My son got tired of hearing about gluten and Celiac, even though he has it too. So I found a confidante to talk to, and it is someone who understands exactly what I am going through, because she has it too. When I need to vent, I can do it and it doesn't bother anyone and it helps me a great deal. It is important to have someone to talk to or vent to about things. It makes coping with Celiac a lot easier. I wish you the best of luck on your journey. I'm just thrilled for you to have found out at 18 and not late in life like some of us. Your life will be so much better for the knowledge of gluten and what it can do. Now your biggest challenge is how to replace your favorite treats with gluten free foods. Do you bake? I'm learning how to make gluten free things just now. It's kinda fun and you might find you enjoy it too if you practice making things that you miss. Take care.

[Skylark]

Hi, and welcome. You have some friends with celiac now.

Giving up foods is HARD. You will grieve because your life has changed and it's OK to cry it out if you need to. The sorrow will pass because really it's only food. You've already figured out that you are not defined by it. Be patient with yourself, and also try to forgive your family for not quite understanding. Take refuge in other things you like to do for now. Do you do a sport, dance, read books, paint, play music, or have another hobby? Celiac hasn't changed any of that and you can use your passions to help define yourself away from the disease. For example I'm a scientist, not a celiac.

I assume you felt sick, and getting your health back is what makes the diet worthwhile. You learn to look at an old favorite food and realize that it will take you back to being miserable if you eat it. It's like considering eating a handful of rat poison. Why would you do that even if it might taste good? Eventually it won't even look like food any more, and it becomes weird to see other people eating gluten.

Also, if you don't cook start learning how. Offer to help out in the kitchen and get your mom to make the family naturally gluten-free foods. Baked chicken and rice with a salad is an example of a "normal" dinner that's totally gluten-free (do make sure the dressing is safe). On a morning you're not working, make the family sausage, eggs, and home fried potatoes. You'll feel less alone if you can sometimes eat the same food as everyone else.

I hope this helps a little and I'm sorry you're going through this alone!

[AVR1962]

My adult daughters went gluten-free before me and I have to admit I did not understand then. It took going thru it all myself to really understand. It's kind of like your mom telling you that she has diabetes. You know something about diabetes, it's a well known disease but then you would ask yourself what it really meant and probably find you knew little about it.

I understand what you are saying, even with as much food allergies that run in my own family, there are some who don't have a clue, don't understand and if you try to talk abut it with them they act like they want to cut the conversation short.

I have been gluten free since April and even just this past weekend, out with friends, I realized just how limited my dining outside of the home is and it can be depressing. But all in all we have to do what is best for us regardless of who understands.

If you still live at home, my suggestion is to buy some gluten-free flour, bake something your brother loves but make it gluten-free and don't tell him until he has eaten it. I cook all the time for my family members who are not gluten-free and they can't tell the difference. If you feel your mom doesn't completely understand what you need you could either ask her to read a book or tell her about what you are learning. Realize she might not get it but hearing the words from your mouth, she probably won't dismiss it.

Hang tough!! You can do it!

[GlutenDude]

You've got to give yourself some time. Don't be too hard on yourself and on those around you. I'm five years in and honestly have just recently 100% come to terms with the disease and the limitations it imposes. And the fact that gluten-free has gone mainstream and idiot celebrities are endorsing it is just making our journey more difficult.

Hang in there. I promise you it will get easier.

[NatZag]

Thank you everyone for all your help. It makes me feel a lot better knowing that i'm not alone. I don't crave foods that made me sick anymore but sometimes i just feel like people are being rude by eating things i loved around me. I know I'm doing really well and all and that most people wouldn't be at the strong point that I'm at right now but i still feel depressed. my depressing (like i said in the original post) is ruining my relationship with my boyfriend. have any of you gone to a therapist or anything to learn how to deal with being so upset all on your on. i don't like feeling like i need to rely on my family or boyfriend to feel better when I'm upset. I want to become stronger faster and be able to cope on my own and strengthen my relationship again.

thank you all again. it means so much to me.

[YoloGx]

Thank you everyone for all your help. It makes me feel a lot better knowing that i'm not alone. I don't crave foods that made me sick anymore but sometimes i just feel like people are being rude by eating things i loved around me. I know I'm doing really well and all and that most people wouldn't be at the strong point that I'm at right now but i still feel depressed. my depressing (like i said in the original post) is ruining my relationship with my boyfriend. have any of you gone to a therapist or anything to learn how to deal with being so upset all on your on. i don't like feeling like i need to rely on my family or boyfriend to feel better when I'm upset. I want to become stronger faster and be able to cope on my own and strengthen my relationship again.

thank you all again. it means so much to me.

I hate to say it but it is very possible you are still getting some trace cross contamination which could be causing at least part of the depression. Have you changed your vitamins and minerals, lipstick, eye shadow, etc. as well as shampoo, soap, body lotion, toothpaste, mouthwash etc. to all gluten free?? Not to mention using your own dedicated cutting board, toaster, oven etc.? And avoiding all trace sources of gluten in various foods as well as medicines?

If you can find a therapist that understands celiac and auto immune conditions I am sure he or she would be of great help. However unfortunately folks like that are often few and far between.

It might be a lot easier and better for you to start or join a local gluten free support group. I am betting there are other teens and young adults in your area that also are celiac or severely gluten intolerant. You could include other auto immune conditions if you want since they are often inter-related.

Definitely too you have the forum here on celiac.com in which to vent and get help for your questions and emotional distress as well as to explore. Many here will gladly give you a helping hand! There are also lists here of things to avoid plus if you Google it on this site you can find sources of gluten-free vitamins and lipsticks etc. as well as previous discussions concerning issues you may wonder about.

Good luck! Hope you start feeling more confident soon.

Bea

[Skylark]

Thank you everyone for all your help. It makes me feel a lot better knowing that i'm not alone. I don't crave foods that made me sick anymore but sometimes i just feel like people are being rude by eating things i loved around me. I know I'm doing really well and all and that most people wouldn't be at the strong point that I'm at right now but i still feel depressed. my depressing (like i said in the original post) is ruining my relationship with my boyfriend. have any of you gone to a therapist or anything to learn how to deal with being so upset all on your on. i don't like feeling like i need to rely on my family or boyfriend to feel better when I'm upset. I want to become stronger faster and be able to cope on my own and strengthen my relationship again.

thank you all again. it means so much to me.

Do you say something when people eat a food in front of you and it makes you upset? Don't assume that they will realize it. Be gentle, but stay firm about it. Leave the room if the person eats in front of you again, quietly, politely and with no drama, both to get away from a bad situation, and to make it clear that you will not tolerate being "teased" with gluten foods right now. Also try gently telling your mom how upset it makes you when she makes your old favorite foods, and ask her to please stop making them for a few months while you get used to the diet. I'd still suggest helping in the kitchen to guide meals towards naturally gluten-free foods that you and your brother both like.

Therapy can be very helpful when you are depressed. So can going on an antidepressant for a couple months, if a doctor thinks it's appropriate. In therapy you can learn some coping strategies, and also how to get a little support without damaging interpersonal relationships. Also, if your romantic relationship falls apart when something hard happens, you may be with the wrong guy. Have you ever heard the expression "fair weather friend"? There are a lot of people who are not very supportive or understanding when things get tough.

Yolo gave you some good advice about the way traces of gluten and other foods can affect our moods, but I suspect you're just kind of stressed out and grieving.

[saintmaybe]

Thank you everyone for all your help. It makes me feel a lot better knowing that i'm not alone. I don't crave foods that made me sick anymore but sometimes i just feel like people are being rude by eating things i loved around me. I know I'm doing really well and all and that most people wouldn't be at the strong point that I'm at right now but i still feel depressed. my depressing (like i said in the original post) is ruining my relationship with my boyfriend. have any of you gone to a therapist or anything to learn how to deal with being so upset all on your on. i don't like feeling like i need to rely on my family or boyfriend to feel better when I'm upset. I want to become stronger faster and be able to cope on my own and strengthen my relationship again.

thank you all again. it means so much to me.

It's been two months since I went off wheat cold turkey, and my fiance brought home a huge damn box of Krispy Kremes. I have been okay with a lot of things, but that, I just had to put my foot down and make him hide it in the cupboard I rarely go into, and not eat in front of me. It's going to be tough, really tough, and sometimes it's okay to articulate to your loved ones that they're doing something that is just too hard on you. I don't ask for a whole lot of accommodations, but eating one of the most delicious and my favoritest foods ever that I can never eat again is one of them.

[mommida]

It will make it easier if you have some of your favorite treats on hand.

Example: suzy's birthday, you have a candy bar, caramel apple, or better yet a frozen decorated cupcake. grab your gluten free treat and go celebrate.

You are just going to have to have a safe stash of food on hand. Nothing is worse than being hungry and then someone is eating something in front of you.

Pizza is just one of those things that I really really miss. So look up a recipe for hot pizza dip. Tastes close enough to the original, but different enough not to keep picking out "why it isn't as good as the gluten thing". Should take you about 20 minutes to make up a batch if you can keep the ingredients on hand.

There are a lot of "junk" foods that are gluten free. I hope you find out it is much nicer to go with healthy fruit and veggies. Like instead of staring at the krispy kremes go for strawberries dipped in chocolate.

[NatZag]

I just recently talked to my mom about the cross contamination with our oven and how it could be effecting me. I know she loves me and is trying but sometimes her reactions seem very selfish. I told her I would clean out the bottom oven myself so that we can cook my foods in there so I can start feeling better and her only response was "we'll see. i use that oven for storage." I also told her i want to see a therapist so i can learn to cope with my emotions on my own and not feel like a child relying on everyone else but myself. she didn't really understand why i would need to do that. its a work in progress but i truly believe that if i can find a therapist that i can see maybe even once a month to just talk to about how I'm feeling and to help me cope with this transition i will get stronger every day.

I was also wondering what supplements you take to stay as healthy as possible. I've started taking Vitamin C, Vitamin B-12 and Fish Oil. For the last few years every time i get sick i stay sick for about three months. I'm realizing now that it's because of celiacs and what it's doing to my immune system. Will these supplements do more harm to me or will they help boost me back to normal? Also, if there are any supplements that i'm missing and you all think i should be taking could you please inform me of them and what they do for my body.

[Skylark]

I'm sorry your mom isn't understanding what you need. Just keep gently looking to improve the situation without aggravating her. (Which can be hard.) As far as therapy, try heading for the self-help section of your local bookstore. There are some fabulous "bibliotherapy" books out there. For relationships I liked "The Dance of Intimacy" by Harriet Lerner. I'm not sure about coping skills, but flip through a few books and see what appeals.

Your doctor who diagnosed celiac should be willing to test your iron, D, and B12 levels and make sure you have no deficiencies. It's worth calling the office to ask.

There is pretty much no way to overdose on C or fish oil and B12 is safe too, as long as you're not taking crazy amounts (like > 1000 mcg/day). I think getting all the B vitamins is important, so I take a multi that has everything, and then add 1000 mcg of B12 a couple times a week. As far as vitamin C, you can't absorb more than 500 mg or so in one dose so there isn't much point in taking more. You can take two or 3 doses with meals if you like, or a 1000 mg timed release. You also need calcium, 1000 mg/day preferably dietary but from a supplement if you're not eating much calcium-rich food. Take D if your testing shows a deficiency, and your Dr. will tell you how much. Same with iron.

Fish oil is fabulous and there is no way to overdose. If your family says you smell like a fish, you probably ate too much. I take two double-strength capsules a day. Inositol is another helpful supplement for anxiety and depression. It used to be considered a B-vitamin, but it got "downgraded" to a food and nutritionists stopped paying attention to it. My shrink friend says it's safe up to 12g/day and again you need to divide the dose. You can get it as powder and put it in your water to sip. It tastes slightly sweet. Lecithin is another really important nervous-system builder. Egg yolks are rich in it, or you can get granular soy lecithin at the health food store and sprinkle it on your food. It's an essential component in myelin that makes up nerve sheaths. Healthy oils in general are good for your nervous system. Instead of commercial dressing use something like olive oil, nut oil, or flax seed oil and vinegar on your salads.

For the depression you could consider getting some St. John's Wort tincture. Look it up online and make sure you're not taking any medicine that would interact with it first. It is like taking an antidepressant medicine, so be careful with it and take it consistently if you decide to give it a go.

[notme]

awwh! poor baby ((((((hugs)))))

it is *overwhelming* i know! tinfoil is your friend, for keeping your food separate from glutened areas. that is not as hard as sanitizing your mom's whole kitchen. you can use the same oven, just wrap yours, or put it on, tinfoil. that's how husband grills for me. i use the same toaster-oven as everybody else, i just put mine on a sheet of tinfoil (not directly on the surface) maybe that would be easier for your mom to wrap her mind around?

get yourself a snack bag and that will make it easier for when you go out and be social also easy to pop a meal into for when everybody else is eating gluten or there is no gluten-free available. i know i am starving the very minute i leave my house!

annnnnd... boyfriend, shmoyfriend. God don't make lonely girls. if a DIET CHANGE is so difficult for him, don't waste your time. ps - you are about to be much smarter than him, anyway. this diet is going to reconnect your brain your body hasn't been getting the nutrients it needs to operate at it's best. but it will now!! i'm talking shiny hair, better skin, ENERGY, allll that jazz. completely and totally out of his league. hang in there, sweetie

[Celtic Queen]

Sorry to hear about your problems. It is hard. I've only been doing this several months and I get tired of having to think before I put anything in my mouth. One thing that has been helping me cope is to continually remind myself that gluten = poison. So every time I look at a piece of cake or pizza, I mentally draw a big red circle with a slash across it to remind me.

I'm not sure why your mom is not taking yourself seriously. My husband doesn't always take me seriously about the gluten, but he seems to be catching on the longer I stay on the gluten-free diet. But just remember that you have to be an advocate for yourself, whether it's with your mom, your brother, your doctor or your school.

[NatZag]

I am curious about nerve damage and its commonality with celiacs. Lately i have been losing feeling in my right leg. Not enough to cause me major discomfort but scary to have happen. Do any of you have nerve damage? I'm going back to the doctors this month so I'm going to have him take a look at it for me. Could it be from low iron levels? My hands and feet also get extremely cold all the time to the point where I don't even notice it until someone asks me if i need socks or a blanket. Should I have my doctor check my iron and vitamin d levels before I go right into taking supplements myself?