glutenfreejenny

I just recently decided to join NA. After I realized I had celiac disease I had a few months of really good feelings and was really happy. Somewhere along the way I lost that. I started taking Benedryl to help me sleep, and I'm pretty sure I became addicted. I started taking more and more. I think what started this all was when I got a medical marijuana card. I would smoke on days when I was sick, and it would help a lot. Recently I have come to the conclusion that this is not healthy. Since deciding to stay free of anything "mood altering" I've been having a really hard time---and this has been without having any brushes with gluten. It scares me to think of what I'm going to do on the days that I am sick. I was self medicating...and there is no medicine to help.

I was wondering if anyone else has had this problem? A lot of the problem is I spent 25 years ill and when I got healthy I didn't know how to cope. I had been dealing with all my health problems, and once those had an "answer" a lot of other things I hadn't dealt with came to light.

Thanks.

I'm sorry I don't have any help for you, but I am in the same boat. I live in in LA and am looking for a doctor that is affordable with no health insurance. Maybe we can stick together and find someone

Jenny

I am looking for a support group (or anyone going through the same thing) in the LA area. (Preferably downtown). Please let me know if you live in the area. I'm in the area for school but I'm in my late 20s and would really like to know someone who can relate and who I can talk to about Celiac.

Thanks,

Jenny

Does anyone have any ideas on how to help raise awareness for celiac disease? Or food allergies??

I've been thinking about making a documentary. Going around interviewing people with celiac disease or food allergies. (I realize they are not the same, I just have both). I think that people have a view of people with allergies and celiac disease and it's wrong. They expect someone to be sickly looking and I want to change that.

Any ideas or suggestions?

Thanks.

See, we have a health center on campus, and on the really bad days, I go there so if I have to miss class or ask for an extension, I can honestly point and say "went to health center". I've also gone to the Dean's office more than once and explained what was going on.

If I were you, I'd go to my dean or the disability office to talk to them. But I suspect that we're coming from two different types of colleges--I go to a tiny liberal arts college where it's very hard to be anonymous and if we miss classes, professors notice and talk to us about it. What's applicable to me may not be for you.

Thanks I'm glad that it has worked for you. I got to a semi-big "art" school so there's a lot of projects and presentations and they are very strict, if you miss it you miss it. However, there is someone who I've heard about that can tell your teacher to give you a makeup if you show them a doc note, etc. Maybe I can go talk to them and see if I can show them my allergen info and come to them whenever I have an outbreak.

I'm going to talk to a school counselor next week and I'm hoping opening up to them will help. Hopefully they can help me talk to the right person.

I think a lot of my problem is I hate being sick. And I hate using it as an excuse. So I don't ask for help and then when I get in over my head I have no one to help me. Guess I have to ask for help.

Since I graduated from high school about 7 years ago I've been working on getting through college. I have several pretty serious food allergies and didn't know about my celiac disease until about a year ago, so it's been rough getting through school while working. I don't have health insurance so I've pretty much been on my own when it comes to learning how to deal with the food allergies and everything else. I have officially been diagnosed with celiac disease but I'm 100% certain I have it.

Although I've been gluten and allergy free for about a year, I still have times when I get sick. I work with children and have a roommate and even though I'm very cautious it just happens sometimes. My question is for anyone who has been through college or has any advice for how to communicate with my teachers about everything.

We have a VERY strict homework and project policy. Unless you have a doctors note for the teacher saying you were there or the hospital you can't hand in anything late or retake exams. I was wondering if anyone knows how most colleges deal with this. I was diagnosed with my food allergies several years ago, so I can probably have the doctor give that information. The problem is when I get sick I don't usually go to the emergency room or doctor since I don't have health insurance. (don't worry if it's serious I go to the ER). With my food allergies I find that taking Benedryl and resting for at least a few hours is what seems to help. With gluten it's 3 days in bed resting, no way around it This becomes a huge problem when dealing with homework and getting to class.

I think I posted a question about this a few months ago and people didn't understand what the problem was. I think a few people asked me why I was getting sick so much that it would bother my school work. I should say my other allergies include soy and corn and I'm very sensitive to them. I pretty much don't eat ANY processed foods, but I can break out into hives when I touch them. I've done everything I can to be healthy and I think that I deserve to go to school and deserve help getting through it, I just don't know how I can go about getting that help.

Thanks.

I also would recommend going gluten free for a few weeks-and see if that helps. If you have celiac you will know. I knew after a day of giving up gluten. Good luck. Also, I have all those symptoms. I also get lower pelvix pain--so I think that could be the gluten. Is it kinda like cramps? That's what mine is like. Really bad stomach camps.

corn- gastro, foggy mind

soy- gastro, foggy mind, red rash, fever

tomatoes- light stomach pain

gluten- ALL symptoms associated with celiac disease

for me the big difference is if it's an allergy I get REALLY hungry and it goes away within hours. With gluten it's 3 days of barely eating and no hunger at all.

I debated on where to post this, I was going to put it in the teen/young adults, but I'm in my mid 20's and I thought I could get more advice from people who are done with college.

Anyway, I am currently working full time (no choice there) and trying to go to school full time (it's turned into part time because of the celiac disease). When I get sick it usually lasts about 7 days to fully recover. About 3 or 4 of those days are spent so tired it's really hard to get out of bed. I still continue to go to work because I can't lose my job, so school comes in second. I've told my academic advisor about my celiac disease, but haven't really explained it or anything. I've been missing a lot of classes lately. When I get glutenated sometimes while sick I'll catch something else like the flu. I work with kids so there's always something going around.

My question is about school. Is there anything I can do to make them more aware and help me out? My teachers all do not accept late work, it's a school policy. So if I miss a day all that work is gone. This is obviously a problem. I've been trying to get through college for the past 5 years. Any advice?

Thanks

Since going gluten free I've noticed a weight gain. I've went up two pant sizes. It's probably because I can now eat a lot more even though I'm not eating bread. But I've noticed a weird thing. When I am gluten free I think my legs look skinnier. It's weird, my stomach is bigger because I'm eating more but my legs look a lot thinner. And when I accidentally eat gluten they look almost swollen. Is this normal?? Has anyone else noticed this??? I am anemic and take iron and when I get gluten I don't think I absorb the iron correctly...could it be that? It just seems weird. When I'm gluten free my calves and ankles look a lot slimmer.

I'm not on birth control, but I have the same problem. My gyno wanted me to go on birth control to make periods more regular. I thought they did that. When I go gluten free I get mine within a month. Sometimes within the next few days. When I very first went gluten free I got mine 2 days later.

Also, my doc was kinda worried I wasn't menstruating at all because it can be a symptom of a lot of serious diseases. But since you're on birth control and i never was it may be different for you.

Are all cleaning products gluten and soy free?? Do I have to check on things like dish soap, hand wash, purell and soaps? I've been cleaning like crazy since going gluten and allergy free and the products scare me. I'm trying not to be overly paranoid like a crazy person but I freak out about everything and whether or not it will make me sick. Going over to other people's houses I worry about their soap and all that. Do I need to worry about all this?

Here's a link to a mainstream grocery shopping guide - they have a couple different ones, this one is Gluten-Casein-Soy Free.

Open Original Shared Link

I have the gluten-free one, don't know how I ever got along without it.

For skin/hair products etc., you might search this forum for the word Neutrogena. I recently saw a posting of a huge list of their stuff that is gluten-free. You could always call or email them as well. There's more safe stuff out there than you realize, so don't panic.

Thanks

I've found it hard to find something that also doesn't have soy. Everyone seems to be putting soy in everything, even beauty products. What a pain.

I hope I can help with the vitamins. I was told my nutritionist who also has celiac disease that NatureMade vitamins are gluten-free, and I even called and confirmed.

Also, I believe Dove is supposed to be gluten-free. You might want to check.

Good luck!

Thanks!! I have the vitamins down, now on to the beauty products.

Would you mind sharing some of the food products that you consume? I have the same allergies that you have (plus a whole load of others, like eggs, dairy, certain animal proteins etc etc), and I have the hardest time finding products like milks, cereals, and things of the sort. I'd love to compare notes!

yeah. I have been ordering from the online gluten free store, but I also go to a lot of stores like trader joes and whole foods to find the same foods. I like to eat fruit bars. There's the George Delights fruit bars, and they have some at target. They are usually just fruit. And there's dried fruits. My favorites are the Sensible Snacks. I put a lot of fruit stuff like that in my purse so I always have a snack with me incase i'm with someone that wants to eat and I can't eat a lot or I get hungry. If I don't have it with me to eat I may get so hungry I eat something I know I shouldn't have.

I also like the Enjoy Life brand cookies and stuff. It's expensive, but I don't have a kitchen (I kind of share one but can't use it much) and that way I can have cookies. They keep away from the 8 main allergies including dairy and egg.

For actual meals I've pretty much been eating a lot of rice. I'll add steamed veggies and plain meat to it.

I eat A LOT of fruit. And I try to get a lot of veggies. I make sure that the fridge is filled with them.

The cereal I've started eating is Perky's Nutty Flax Gluten-Free Cereal. At first I thought it was terrible but I now actually like it.

I assume you use rice milk?? I eat SO MUCH rice. I used to eat rice milk and may go back because I think I might have a dairy problem. Rice cakes, actual rice, rice milk...lots of rice. I also like potatoes but try to not eat them so much because I eat so much rice already and it makes me really thirsty and I can't combine the two.

Sorry this is so randomly written and long. Do you cook? Do you have any recipes you like?

I'm a 24 year old girl and I feel the same way when it comes to relationships. I've had them, but I feel like I've missed out on a lot of opportunities because I wasn't diagnosed until a few months ago. Dating and all that while suffering from all the symptoms...not easy. But I try to think about all the things I have gained from being sick. Going through celiac has put me through a lot of situations people my age don't yet understand. I'm the only one I know who's exstatic I can go to college, because before there was no way I was well enough to go. I think now would be the perfect time for you to go and talk to someone, and I think you should look around until you find someone you are comfortable with.

I am allergic to soy, corn, and tomatoes. I've pretty much started eating only basic foods--plain. And if I get sick I hope I can find meds i can take. My worst fear is i have to go to the emergency room for something serious and they can't find the medicine I need in a corn/soy/gluten free form.

I am anemic and I think that is what is causing it. I have tried taking iron before going gluten free and it didn't help...but now that I am gluten free when I take some iron when I get restless leg it helps a lot.

I've pretty much gotten corn, soy, tomatoes (also allergic to blah) and gluten out of my diet...But cosmetics and body lotions and washes and all that is almost harder. I have NO idea what to use. I thought I would check here and see if anyone could help before I start calling companies like crazy. I'm just afraid I will find nothing!! The problem is the soy and gluten combination is hard. And I a skin rash (kp I beleive) all over my arms, upper back and legs that will not go away.

Also, finding vitamins is a pain as well. Something without corn, soy, and gluten is always more expensive. Especially at GNC which is the only place I know that labels when it's not in it. Does anyone know any other place that makes finding vitamins a little easier?

Thanks

My neck looks swollen. Could that be from celiac disease?? Is that what you're talking about?

I have KP. Is it what you eat the causes the rash or do I need to go gluten free with all my lotions and body washes? That's a pain.

I don't have heath insurance because I'm a poor college student Growing up I've been to MANY doctors who have been no help whatsoever. An allergist who told me I was allergic to soy, corn, and tomatoes and sent me on my way. I had to REQUEST an epi-pen. And he simply told me not to eat anything I couldn't. I've been to natural healers, regular docs, gastro docs, etc. After many years of trying to go allergy free and still being really sick I gave up gluten and now I feel waaaay better. It's only been about 2 weeks but it's going really well.

I still have a skin rash and trouble sleeping but my stomach feels 100% better and I'm finally properly digesting my food. My question is should i go see a doctor? Does anyone think it would be worth it? I've heard so many horror stories about docs and celiac, and since i've been Gluten-Free for a while I probably won't test positive. I know I have celiac and don't need a doctor to tell me that and don't want to waste my money if they are no help.

Any suggestions? I know there are some specialists around the SF area where I live, but it could get expensive. I really just want to spend my money on food. Thanks

Since I've gone gluten free I've noticed I've been really dehydrated. A few times I've rushed to the drugstore to get some Gatorade to help. And I do also have frequent urination. But I am a normal weight. Do you have to be underweight?

Thanks for all the help!! I also don't eat soy, corn, tomatoes, and most dairy. I eat cheese but don't like eggs or milk. I think it will be meat, veggies, fruit, nuts, beans, and rice for me for a while.

I get really bad restless leg when I try to go to sleep, and sometimes my hands get tingly when I don't sleep a certain way. It definitely gets in the way of sleeping because I have to try to move my leg so it stops a little.

Does anyone else have this problem? I've always had trouble sleeping, but never knew why but I think this is the problem. Does anyone know anything to help?