Newly Diagnosed

[Booghead]

Hey everyone!

I was diagnosed by blood test this week they did an endoscopy to confirm. I am 17 years old and a Junior in highschool. I have missed a lot of school these past few weeks. And a lot more these last 8 or so years. Doctors app. after Doctors app. telling me I am constipated when hours before I was having horrible Direaha (spelling). This is going to be the begininng of a feeling better. I have a couple questions. Do you think there is a chance that the biopsy's could come back negative? Did you guys go off gluten cold turkey or did you wean off of it? I have been having A LOT of pain since the endoscopy on tuesday morning. Its getting less and less. I look in my cupboard and think I can't eat that or that or that. Oh, wait I can't eat any of this.....sigh. I am really concerned about making up math and chemistry. I e-mailed all my teachers and they all seem very supportive and my counselour is amazing. 2 of my teachers didn't reply... The 2 I was most worried about: Math and Chemistry. UGH! Algebra is hard for me and I have missed more then a whole unit. Chemistry is just insane. Both these classes build on what you learn and I haven't been learning anything since I'm not there. I am thinking to make up all my work over thanksgiving break when I have 5 days off(counting the weekend). How will I make up stuff I have no idea how to do? I don't want anyone to think I am a slacker and both of my "trouble" teachers are men which makes it harder for me to talk to them. Any advice about school or going off of gluten (in a family that eats gluten) and about endoscopy results would be really apperciated! I kinda feel like no one really knows how I feel inside and no one really gets the pain because they don't have it and they think its no big deal, it's just Celiac's! It's not like I have Crohns or anything! help!

Thanks so much in advance!

[Roda]

As for making up the work is there anyone in your class willing to tutor you to help you catch up? Maybe get a doctor's statement as to why you have missed so much school.

Your whole family needs to be educated on celiac. The book Gluten Free For Dummies by Dana Korn is a really good book to start off with. It explains things very easily. If the whole house isn't going gluten free there are certain precautions that must be taken for you to be safe. You need a separate toaster, pasta strainer, condiments(unless they can prevent cross contamination ie double dipping etc), and cutting board. If there are old wooden spoons they can't be used for your food(you can get new and dedicate them gluten free). Cookware is alright to share if it does not have a nonstick coating and is washed well. You may find you need some separate items. If you are going to share baking pans(metal ones) I would line them first with foil or something else. Glass bakeware should be fine to use if cleaned well. Don't use the waffle iron for gluten free as it is contaminated. Not sure if your family would be willing to get rid of regular flour or not. I have a shared house but do not allow my husband to bake with regular flour because it gets airborn and then settles down on the counters contaminating them. I bake everything gluten free and if he wants something I can't or won't make then he goes to the bakery. You will need an area for your things and a safe "gluten free" area for food preparation.

I know I haven't touched on everthing so I hope others will fill in what I have missed.

[Di2011]

Hi Booghead,

This Gluten Free thing can be tough hey?

I know it might be personal or hard sometimes but can you tell us more about your circumstances at home? Most of the posts we read here are from parents or young people not at home (college, uni, etc).

Gluten free actually isn't that hard but it depends entirely on your situation at home. Who shops? who cooks? how much support do you have? what are the normal eating / diet habits at home?

The people on this forum have been so supportive that I feel like I could say and ask anything here. Be willing to ask whatever you feel/need and provide as much background info as you can. It gives us a better idea of what might work for you going gluten-free.

[Booghead]

My mom and I usually shop for groceries together. All of our pans are nonstick so I guess I need new ones? Is it really that big of deal to share pans with gluten food? My family is very dependent on gluten filled foods. Bagels, Poptarts, toast, sandwiches. I have a fairly good amount of support from my mom i would say an 8 on a scale of 1-10. My father is a very skeptical man. I was diagnosed with depression when I was 13ish and I guess that could've been celiacs then. He didn't believe in mental problems but now in a way he thinks these stomach problems are "all in my head" its very ironic. I love my father and he loves me. We get along better then me and my mom do! I just can't talk about things like my stomach hurting or not feeling very optimistic that particular day. I don't say anything and he usually ignores any signs. Its very odd because if I had to bet who my genetic link was for Celiacs it would be him. He is getting better at understanding. Much better then when I was staying home for unexplained stomach pain "constipation" is always what the doctors said and my dad didn't like me home for that. My family is middle class. We are struggling like most of the country. My dad just got a new job and we bought our house 4 years ago when tiems were good. We can't really afford to live here and our bills take every paycheck away. Its a pain for me to deal with this as my parents don't believe in talking about this alone. We now have medical bills and so I would feel bad asking for seperate strainers and pans if it isn't necassary. I'm thinking I will ask for some of this stuff I need for Christmas since I don't really want much anyway. Please explain more what I need? We have glass baking pans but ALL of our stove stuff is teflon or nonstick. We have 2 plastic strainers. Also do you guys use a flour blend that you like or just a particular flour for all purpose things. My mom has never been the homemade kind of lady, so I will be treading uncharted territory. Tips for thanksgiving would be nice too! I'm excited to be a part of your guys forum!

[lizzy59]

Honey, (I'm new to all of this to--I haven't even been diagnosed yet!) I just want to say that you don't have to do everything at once. Start by making a list of foods that you like that don't contain gluten, and go from there. I've read that a lot of people find that, at least at the beginning, it's just easier to simplify your diet, so gluten is easier to avoid. Stick to foods that don't have a lot of ingredients so you don't become overwhelmed. An example would be a fried porkchop, a baked potato, and a salad with a simple dressing.

I hope someone will correct me if I'm wrong, but I've heard that you only need to replace non-stick pans if they're scratched. Just buy one new item each week to make it easier to stick to a budget.

As someone else suggested, why not get a book for your parents to read? Maybe your dad would learn that this is a bonafide medical disease, and you could then discuss it more. I know family dynamics are never easy!

Is it possible he could come to a doctor appointment with you, to have your doctor explain the condition? Somehow he has to realize the seriousness of this, and get in your corner. I know, easier said than done, right?

Well, good luck to you, and you've found the right place...there are so many knowledgable and friendly people here that you can come and vent or ask questions anytime.

[elfie]

Booghead, welcome to our world, sorry you had to join us, but you are not alone. I know how hard it is when you are in a gluten household that isn't very supportive. I also know how economic hardship can make it even harder as I'm low-income and in a similar situation to your parents in not really being able to afford my home, etc.

If it weren't for gluten issues then thrift stores would be good places to get stuff. We need to avoid contaminated cookware so they aren't an option. I've found that odd lots, big lots and dollar-type stores are good places to find a lot of the things we need for cheap. I don't know if you have those in your area but there should be something similar.

I've recently been thinking about cookware because in 2 years my daughter will hopefully be going away to college and she'll need her own. You don't really need a lot of things to start off with if you start simple with whole foods and don't spend a lot of time trying to replace the traditional gluten items like bread.

What I came up with as basic cookware starters were a skillet, a lidded saucepan, and a pancake turner (spatula) and maybe a serving spoon. With shopping at the stores I mentioned they would add up to around $25. If you need to spread that out over time I'd start with the skillet and spatula---bout $11 to get both.

With the glass baking pans, really good cleaning before using would make them usable. If you have corel-type plates and glass glasses then the same would hold true for them. If they are plastic or scratched up stoneware then they would be a risk. If it's possible, have your own plate, bowl, glass, etc. from the household kept separate, along with your basic cookware. Some people use a rubbermaid type container to hold their dedicated gluten-free stuff away from the regular household stuff in order to reduce the risk of getting contaminated. Unfortunately, you need to make sure to wash your things separate from those with gluten on them.

If you were to try the gluten-free pastas there are ways around having a strainer until it's possible to get one. I've used the lid of a saucepan to hold back pasta (even before gluten-free) while pouring out the water.

If there is a shelf in the cupboards away from the gluteny stuff that you could store your stuff in that would be great. If not, you can store your gluten-free stuff in the container. If there's a way to get a section of the top shelf in the fridge to keep your gluten-free stuff that would be a help as well.

For most of the meals I make I don't use more than what I listed above.

Anyhow, that's a start. I know there's more to learn about this but I wanted to give you an idea of the basics of cookware for now. There is all kinds of good information that you will find in this forum.

Oh, and wax paper to cover anything you might heat in the microwave. As an example, if you poke a potato a couple times with a fork and wrap it in wax paper, set it on a safe dish and bake it in microwave for about 5 minutes (time will vary with size of potato and power of microwave) then you have a baked potato or the start of a loaded baked potato---add toppings of your choice.

Good luck to you and don't give up. If I'd have known about my gluten issues at your age I probably wouldn't have lost years of living my life well to fibromyalgia and neuropathy. Now that I know about it I'm slowly healing from the damage and feeling so much better.