Please Read This..i Need Inputs..

[Whalie]

ok so im new to this website but have had celiac since i was 12,and now im 17.Celiac has been a really rough road for me and finally came looking for help...Since i was diagnosed with celiac i havent been in doubt that i have it but just didnt want to deal with it.It was hard as a kid being told i had something i never heard of before and being told if i keep eating "food" it will make the small intestine worse etc...So i didnt want to change and kept on with my life trying to just "deal" with it,and move on..so i did.Ive felt the worse pain ive ever felt in my life while having this disease.which leads me to this..i did the whole gluten free meetings where u meet other people like u and i met this one fella..he told me by smoking weed it helps the pain u experience..So i tried and been a religious smoker ever since.Honestly it helps me,i was just woundering who else uses ganja to make the pain go away.

[ravenwoodglass]

While pot can help the pain you really need to become gluten free. You are risking a lot and pot can't help keep the autoimmune destruction at bay. I did use it for years for the reason you are but it didn't keep all the stuff you see in my signature from occuring. Please become compliant with the diet it could save you from a lot of other problems.

edited when I had more time to add...

I was not diagnosed until very late in life. After I was diagnosed I no longer had to deal with the pain and have since been pretty much pain free for years now. While the diet can be hard to get used to, once you are gluten free for a bit you get used to it. It is wonderful to be able to live without having to take anything to get rid of pain. I hope you get on the diet strictly. You may not have really felt well for a long time. The changes you will see in your self are well worth the trouble.

[GFinDC]

I take an aspirin sometimes, or some wine. But none of that stinky smoke stuff. Hiding the pain is a temporary thing and won't keep your gut from being damaged. You could be stunting your growth and development due to not absorbing vitamins and minerals that your body needs also. Young people especially need to keep a healthy diet as the brain is still developing at your age. Lots of muscles and bones that need nutrients to properly grow also. So my advice is to get on the gluten free diet and stay there. There are lots of people on this site doing gluten free so you know it is not impossible. We are proof it can be done. And it does get easier the longer you are on it as you learn new eating habits and new favorite foods. Lots of the things people miss are just their habits of eating this or that thing whenever they want. All that is stuff you learn and you can learn a different way also. And feel better too! Pain free!

Welcome to the site and I hope you like it here and stick around to read and ask questions. We are all going thru the same thing. It's big boat!

[tarnalberry]

I don't. For celiac or fibro pain. But I can't stand smoke from most any source (including fireplaces), so I wouldn't even try it.

[ravenwoodglass]

You could be stunting your growth and development due to not absorbing vitamins and minerals that your body needs also. Young people especially need to keep a healthy diet as the brain is still developing at your age. Lots of muscles and bones that need nutrients to properly grow also.

That is a very important point also that can be overstressed.

[Whalie]

That is a very important point also that can be overstressed.

.

thanks for the information and yes I really need to start doing something about this before it gets worse..I just dnt really know how to start?i guess u might say....tips? btw,one of the reasons I didnt start is because I really hate the foods they have..

[RiceGuy]

...btw,one of the reasons I didnt start is because I really hate the foods they have..

Who's "they"? If you are referring to the gluten-free versions of traditional wheat-based things like breads, pastas and such, there are many brands to choose from. Plus, a number of improvements in the texture and taste of gluten-free breads etc have been made since you were first diagnosed. You may find it worth the effort to explore the available options. Various members of this board seem to have differing opinions on what the best this or that gluten-free food is, and it can take some time to find things you like.

That having been said, many do experience gluten withdrawal when first starting on a gluten-free diet. It has been noted that finding appreciation for the gluten-free versions of your favorite gluten-filled things can be nearly impossible during this time. Thus it is often suggested to simply not attempt to replace all your favorite foods so early, or all at once. Stick to fresh vegetables, fruits, nuts, seeds, legumes, and so forth. If you eat meat, avoid the processed items, and go for the plain meats, and season/flavor them yourself. Avoid processed foods as much as you can. Following these kinds of recommendations allows for a quicker, more complete recovery. Once you are feeling better, you can start to explore some of the prepackaged gluten-free versions of breads, pastas, etc. But again, it helps not to jump in all at once. And the less processed foods you eat on a regular basis, the better your body will generally maintain itself.

One favorite food many find comparatively easy to appreciate gluten-free is pasta. The Tinkyada brand is the overall favorite around here, though there are certainly others you may wish to explore. I'm not the only one who'll tell you that Tinkyada tastes so good that even gluten-eaters like it, and often cannot even tell it's gluten-free.

Gluten-Free breads are another matter, but if you have time to bake it yourself, that is the best way to enjoy gluten-free breads. Not only because it is generally better tasting than prepackaged, but much more economical.

Truly, the gluten-free diet is not difficult once you have acclimated. And it is likely to be the best thing you can do for your health. You won't regret the improvements in your health and wellbeing. But the longer you wait, the more damage can and generally does occur to the body. The sooner you start eating a diet that fits your body, the better off you'll be.

[GFinDC]

I put in some links that might give you some ideas of foods to eat. That's actually a pretty frequent topic around here as people are always wanting to find snacks or candy or breakfast ideas.

There are some cheap subs that work for wraps. Like Mission corn tortillas, Trader Joe's brown rice tortillas, or Food for Life brown rice tortillas. You can run water over these just to wet and then microwave them for 25 seconds to soften them. Or throw them in a skillet with a lid while you are cooking something else.

There are tons of recipes in the cooking section here and lots of product suggestions in the gluten-free products section. And there is a store on this site that sells gluten-free foods also. You can learn to make rice and veggies with chicken or other meat protein pretty easy. I cook the meat separately first and then mix it into the rice while it's cooking. You can brown the meat that way and it adds some flavor.

It's really not a bad diet at all once you get used to it. Learning to cook is an important talent that everyone should strive to do at some point in their life. It is more important for us though.

Breakfast ideas

Help With Breakfast Ideas eating

Quick Breakfast Ideas?

Dairy-free Breakfast Ideas? need hints!

Need Breakfast Ideas -- Gfcfsf

Breakfast Ideas

*****************************************

Snacks/lunch

[Skylark]

Do you realize you are risking a very serious health condition called refractory celiac disease by continuing to eat gluten? Refractory celiac can lead to some fairly nasty intestinal cancers. What you are doing with the pot is the equivalent of repeatedly beating your head into the wall and then smoking dope to get rid of the headache. Stop hurting yourself by eating gluten and the pain will stop on its own. If you talked to a friend who was doing this, you'd think that friend was crazy.

Remember that fruits, vegetables, rice, potatoes, beans, nuts, cheeses, and meats are all naturally gluten-free. You will need to cook some to do this diet, unless you have lots of money to spend on expensive gluten-free substitutes. As far as brands, Udi's is the best by far. Glutino is pretty good too. Look around the board and you will find lots of info on good and bad products but mostly stick to natural, whole foods to do the diet.

[Whalie]

ok,dnt be so crucial on the replies guys..just asking for help.

[shopgirl]

ok,dnt be so crucial on the replies guys..just asking for help.

They're not trying to scare you. Celiac Disease can lead to intestinal and stomach cancer if left untreated and the only way to treat it is to just follow the diet. It isn't easy for any of us, believe me. But now that you're 17, you're going to have to start taking responsibility for it. There's no easy way out of this one: you get the diagnosis and you go on the diet. Everyone around here will be glad to help you but you won't find any support for smoking pot in lieu of doing what you need to do.

[Emilushka]

ok,dnt be so crucial on the replies guys..just asking for help.

Hon, I agree you need help. Smoking pot is something that chronic pain sufferers are sometimes reduced to, but it's not the best solution, especially at your age. There are better options. Please do read the links that are above, but also realize that what the other posters are giving you is tough love because they are genuinely concerned for your health.

Take care of yourself first and foremost. Going gluten-free is difficult because it's a major adjustment. It's a huge lifestyle change. At your age, it's especially hard because pizza is a major go-to food (also other fast food).

Please feel free to PM if you have questions or if there's anything specific we can do to help. We're all here to support each other, and that 100% includes you. Let me know if there's anything I can do. You're not alone in this.

I agree with the above though: please do go gluten-free. If you have Celiac, that's the only way to live your life without problems.

[ravenwoodglass]

Do you still live at home and have someone else who is cooking for you? If so it might be a good idea to have them come here and read some of the posts in the recipe and coping section as well as the section of freinds and loved ones of celiacs. They can ask any questions they need to, as can you. We are here to help you and your family. It is also important that everyone in your family be tested once one person is diagnosed. Usually there is at least one other person in the family who needs to follow the diet. It isn't easy at first to follow the diet and we are all here to support you on that.

Many foods are naturally gluten free and almost anything that can be made with gluten can be made without. If you have favorite foods that you think you will miss do post what they are and someone will be glad to tell you how to make them gluten free. There is lots of snack stuff that is safe, Snyders now has gluten free pretzels, there are gluten free candies like jelly bellies, starbursts and candy bars like snickers, dark milky ways etc. Just ask what you need and we will do all we can to help.

[GFinDC]

.

thanks for the information and yes I really need to start doing something about this before it gets worse..I just dnt really know how to start?i guess u might say....tips? btw,one of the reasons I didnt start is because I really hate the foods they have..

Hi Whalie,

Maybe you could get some Chex gluten-free cereals for breakfast, and some almond milk or hemp milk. The hemp milk is for the cereal tho, not for smoking! Eggs are good for breakfast also, and you can hard boil them and carry them in a cooler for snacks. When frying your eggs you need to use a clean skillet and spatula, not one that is shared with gluten foods. You should also have a dedicated gluten-free toaster. Peanut butter, mayo other condiments should be dedicated gluten-free and not shared either.

Many people have trouble with dairy at first so you should think about cutting out dairy for 3 months or so if you suspect it is causing problems for you. You need to check everything that you consume for gluten, and that includes vitamins, medicines, sodas, coffee, tea, beer etc. There are gluten-free beers like Redbridge available. But I doubt a young feller like you would be interested in those.

You might find it helpful to go a local meeting of celiacs and get tips from them about places to shop for foods. There are chapters of the Celiac Sprue Association (CSA) and also R.O.C.K. in many areas.

Open Original Shared Link

R.O.C.K. (Raising Our Celiac Kids) - National Celiac Disease Support Group

A gluten-free candy list:

Open Original Shared Link

You can also google organic foods and the name of your city to find grocery stores that have organic foods. Most organic/health food stores have some gluten-free items available.

[Whalie]

Do you still live at home and have someone else who is cooking for you?

yes i still live at home..And yes my family is getting involved.

[ravenwoodglass]

yes i still live at home..And yes my family is getting involved.

Great that can make it so much easier. If the chef in the family needs or wants tips there are a lot of good books coming out with recipes as well as the thread here. The home page here has lists of allowed and not allowed stuff if you folks haven't got one already.

[Whalie]

Great that can make it so much easier. If the chef in the family needs or wants tips there are a lot of good books coming out with recipes as well as the thread here. The home page here has lists of allowed and not allowed stuff if you folks haven't got one already.

cool.ive been talking to my mom about this and she wants to visit the site just hasn't yet.

[Eilidh]

ok so im new to this website but have had celiac since i was 12,and now im 17.Celiac has been a really rough road for me and finally came looking for help...Since i was diagnosed with celiac i havent been in doubt that i have it but just didnt want to deal with it.It was hard as a kid being told i had something i never heard of before and being told if i keep eating "food" it will make the small intestine worse etc...So i didnt want to change and kept on with my life trying to just "deal" with it,and move on..so i did.Ive felt the worse pain ive ever felt in my life while having this disease.which leads me to this..i did the whole gluten free meetings where u meet other people like u and i met this one fella..he told me by smoking weed it helps the pain u experience..So i tried and been a religious smoker ever since.Honestly it helps me,i was just woundering who else uses ganja to make the pain go away.

Hey Whalie,

I am 17 too and have known that I am Celiac for 7 years. I have never used pot to numb the pain, because I get more then just pain when I eat gluten. My mom, my sisters and I are all Celiac, so we all had to make the transition together, and I guess that made it a bit easier.

I had trouble with the fact that I was Celiac for years. But now, I have accepted that my body is never going to heal if I eat something that is killing it...and the pain is only going to get worse if I do. A few years after I was diagnosed , my mom's birth mom was diagnosed...then 2 of my mom's sisters (one of whom has 3 celiac kids). Now, the mother who adopted my mom has found out she is celiac AND one of her birth son! Crazy. This disease is hereditary, as I'm sure you have heard, so more of your family may be Celiac as well.

The point I am trying to make is, that you are not alone. Numbing the pain is not going to cure you of Celiac disease, it is just going to take your mind off of it, but there is a healthier way, and that is to follow the diet. Really it is simpler than you think.

I think the best way to get started, is to do what you already have done....get more info and talk to people. The more educated you are, the easier it gets. Ideally you would know, off by heart, the foods you can and cannot eat. But it is better to start off with something like a food dictionary. It might sound dorky, but it will be a life saver in the long run. Just carry it around in your purse or backpack. Next step is to read ingredient list. I know how time consuming and annoying it can be, but it will teach you to read closely and find the gluten hidden in so many products.

After that, it is all up to you, ultimately you choose your own life. If you prefer to numb the pain, and watch your body suffer, thats up to you. But if you want to have a normal, fulfilled, and stomach painless life, then I highly suggest going on the diet and doing what ever it takes to stick with it.

Email me if you want to talk more,

Eilidh

[cyberprof]

Hey Whalie,

I am 17 too and have known that I am Celiac for 7 years. I have never used pot to numb the pain, because I get more then just pain when I eat gluten. My mom, my sisters and I are all Celiac, so we all had to make the transition together, and I guess that made it a bit easier.

I had trouble with the fact that I was Celiac for years. But now, I have accepted that my body is never going to heal if I eat something that is killing it...and the pain is only going to get worse if I do. A few years after I was diagnosed , my mom's birth mom was diagnosed...then 2 of my mom's sisters (one of whom has 3 celiac kids). Now, the mother who adopted my mom has found out she is celiac AND one of her birth son! Crazy. This disease is hereditary, as I'm sure you have heard, so more of your family may be Celiac as well.

The point I am trying to make is, that you are not alone. Numbing the pain is not going to cure you of Celiac disease, it is just going to take your mind off of it, but there is a healthier way, and that is to follow the diet. Really it is simpler than you think.

I think the best way to get started, is to do what you already have done....get more info and talk to people. The more educated you are, the easier it gets. Ideally you would know, off by heart, the foods you can and cannot eat. But it is better to start off with something like a food dictionary. It might sound dorky, but it will be a life saver in the long run. Just carry it around in your purse or backpack. Next step is to read ingredient list. I know how time consuming and annoying it can be, but it will teach you to read closely and find the gluten hidden in so many products.

After that, it is all up to you, ultimately you choose your own life. If you prefer to numb the pain, and watch your body suffer, thats up to you. But if you want to have a normal, fulfilled, and stomach painless life, then I highly suggest going on the diet and doing what ever it takes to stick with it.

Email me if you want to talk more,

Eilidh

This is the best post! Eilidh is 17 so s/he is better able to speak to this than I(as a middle-aged old person). Whalie, I hope you can get some relief and some comfort from this post.

[katie may]

Do you realize you are risking a very serious health condition called refractory celiac disease by continuing to eat gluten? Refractory celiac can lead to some fairly nasty intestinal cancers. What you are doing with the pot is the equivalent of repeatedly beating your head into the wall and then smoking dope to get rid of the headache. Stop hurting yourself by eating gluten and the pain will stop on its own. If you talked to a friend who was doing this, you'd think that friend was crazy.

Remember that fruits, vegetables, rice, potatoes, beans, nuts, cheeses, and meats are all naturally gluten-free. You will need to cook some to do this diet, unless you have lots of money to spend on expensive gluten-free substitutes. As far as brands, Udi's is the best by far. Glutino is pretty good too. Look around the board and you will find lots of info on good and bad products but mostly stick to natural, whole foods to do the diet.

I agree with Skylark - you're setting yourself up for trouble, and then what? Your problems can be so much worse; you're going to have to face them eventually, so why not now when you're young and can heal? I wish I could still be only gluten free, but now I have to follow a completely grain and dairy free diet because of all the damage Celiac did to my gut. You can imagine that the options are limited. Gluten free can be fun, and you can manage it even in high school and college. There's lots of fun foods that most people don't even get to try because they follow regular gluten-filled diets. I'm not dogging the pot, but I am hoping you see why it's so important to take responsibility for your health. I know it's not easy, and you didn't ask for the disease but you can't go back to before you knew you had celiac disease, when it probably hadn't triggered yet.

[hkgir1]

I can't stres enough that you can kill yourself both ways. by ignoring your celiac you are slowly killing yourself which is what accually happening to my aunt she is not able to take in any nutrients anymore and can't eat anything besides chicken and fruits also you could kill yourself by smoking by getting cancer my grandmother got 2 types of cancer lung and stomach cancer. she got lung cancer from smoking and stomach cancer from ignoring her celiac. It makes me sad that you are not only doing what I'm doing but just are at a later stage of it. I now cannot eat anything like wheat (buckwheat, corn, rice, ect) and I cant't eat any spices and it has gotten so bad that I can't even tolerate lettuce. You may think this is an extreme case but it really is not. Just don't hurt yourself further I know

[sb2178]

So, now's a great time to have all sit down (well, those who shop and cook) to review some basics and figure out what is already safe and how to create safe spaces for you. You'll need your own butter and jam, for example, and it's helpful to have totally gluten-free space so you don't have to scrub down the counter before you make a snack.

There's some really easy stuff, like not eating bread. But lots of places to trip up. It takes a bit of practice, but it is so worth it. Pain bites, and to have it honestly really really gone is wonderful.

Be really careful of:

• 
  
  
• soy sauce
  
• malt
  
• previously contaminated foods, like when someone used a measuring cup for flour and then uses it in the sugar without washing it or a toaster
  
• duh but i didn't think of it items like beer or vitamins that are made with barley and wheat
  
• forgetting to read the label. even if you think it's safe.
  

Less processed it better, but if you need chocolate and tortilla chips to not eat your sister's cookies for a few weeks, eat them for now. You can work on less processed after you have the basic diet down and are starting to feel better. It does help, but requires a little more energy and thought. Oh-- and if you want cookies, all the fake oreos I've eaten are quite decent.

Tortilla chips, corn tortillas, and almond thins are readily available and generally safe (read that label). Rice cakes are also good if you like then (I hate them but some people like 'em). Mostly, you can sub them in for whatever bread you were eating, like with PB or tuna salad, or sliced ham... Progresso has some canned things that are safe, and so do Hormel and Bush's baked beans.

Definitely come back for help if you need more suggestions.