22 And Helpless?

[NJCarder]

I am 22 years old and I was just diagnosed about 2 weeks ago with celiac. I honestly know nothing about it except I can't have gluten and my stomach hurts if I do. I came on here and now I'm hearing about rashes and people hurting just by touching bread crumbs. I'm really lost and kinda scared I suppose. For now I just get stomach aches and need to be near a bathroom. I don't want it to get worse and my throat clothes or something (that might just be people with peanut allergies i dont know.) Can someone explain celiac to me? If you have celiac is it the same for everyone? Is it like a peanut allergy to where some people can't even breath in the dust and some people just can't eat them? If I continue to eat gluten and just deal with the stomach aches am I going to die at the age of 50? I really have no clue about any of this.

[raen]

its all totally overwhelming at first..

No, it is not the same for everyone. even within my own family, i have two brothers with celiac and we all have significant differences - we even have different levels of alergicness!

your throat will not close. the closest to that i have ever heard of happening with gluten, is asthma or hyperventilation, anxiety, that sort of thing - only triggered, not caused, by gluten.

you will not die at age 50, but you CAN kill yourself by eating gluten. if you do not eat gluten, you should have no side effects or symptoms - remember, its an allergy, not a typical disease. eating gluten when allergic for a long period of time, it can lead to diabetes, stomach/intestinal cancer, hernia, acid reflux, vomiting/diarrhea/constipation, malnutrition, hormonal issues, sleep and mood disorders, arthritis, dermatitis, huge mouth ulscars, and all sorts of general "your body is not working right" side effects.

however, it goes both ways! i stopped eating gluten and my hypoglycemia disappeared almost immediately, ive head of people with thyroid disorders reverting back to normal, too. it may be a disease-allergy but you certainly have control over your own health with a disease like this.

its not as big-bad-wolf as it all sounds. simple treatment : no gluten. minimal dairy. careful with oats, msg, and other possible allergens. (if you have a gluten allergy, you are more susceptible to other food allergies.)

these are bad - these are good

switch to a gluten-free shampoo, hand soap, sanitizer, dish soap. yes, soaps can have gluten. i like berts bees, its sold everywhere and smells good, their gluten-free items are Open Original Shared Link

important - clean your home area to make it gluten-sanitary, and quarantine all gluten and gluten-free food if you live with another person who wishes to eat gluten. make those people be careful with their food. never own regular flour, as the dust can just get everywhere.

eating out is stressful, but manageable, you just have to accept that you will probably not piss off the waiter with your "i need a new fork, bread got on this one" requests.

if your not sure, dont eat it, if you cant pronounce the ingredients its probably bad, even if it says "gluten free" read to make sure it has no oats or barley, and wash your hands before eating or touching your face.

[BelievinMiracles]

Hey I'm 21 and gluten free. I was never diagnosed but suggested to go gluten free a couple months ago because they weren't finding anything to be my problem other than an abnormal CRP test. Going gluten free especially while in college has been super stressful. I'd recommend going to a nutritionist or dietitian because i know you can't eat a lot of stuff that lacks a lot of vitamins you need.

Everyone reacts differently. If I eat gluten I don't get bothered by it until 3 days later and it stays for a couple days. I get super crampy and I have to be by a bathroom. Celiac isn't a death wish and a lot of people wish they were in your situation, that found an answer. I've heard stories where people went 10 some years misdiagnosed. If you catch yourself early and go gluten free, your body repairs itself and you will be fine. Some people never have symptoms and by a fluke it was discovered that they have Celiac. So it's definitely different for everyone. But despite your symptoms, if you eat gluten, your damaging yourself.

Going out to eat sucks and being in college and not being able to make ramen sucks. I actually have to.... duh duh duh (that's scary music) have to cook! (gasp!) so it's been a different and scary experience and expensive for me because I have a really little budget. Once you get in a flow of being gluten free, it gets easier...still frustrating but easier.

[MyMississippi]

Celiac disease is a VERY manageable disease------

FIrst you need to obtain all the information you can from reliable sources about Celiac. The book " Celiac Disease, a hidden epidemic" by Dr. Peter Green--- is a good place to start. He is the director of the Celiac Disease center at Columbia University. Your library probably has this book.

THe only gluten free product I use is my lipstick (because I lick my lips)

I don't worry about what kind of shampoo, hand lotion, soap, make up, etc that I use ---- because I am grown--- and I DON'T eat that stuff !

You will have to learn the basics about cross contamination and what foods are safe, how to read labels, etc. This will take awhile, but will become second nature.

But don't sweat it----- you can easily deal with this disease--- once you have the proper information.

[ravenwoodglass]

THe only gluten free product I use is my lipstick (because I lick my lips)

I don't worry about what kind of shampoo, hand lotion, soap, make up, etc that I use ---- because I am grown--- and I DON'T eat that stuff !

You really do need to avoid gluten in your shampoos, toiletries lotions etc as well as food. When you are showering it is really hard to avoid having some soap or shampoo get into your nose or your mouth. When you use lotions you apply them with your hands leaving some residue on the hands. When you put your hands into your mouth or use them to eat with you will then be transferring the gluten ingredients into your system. Celiac is an autoimmune disorder. It takes only a microgram to cause the antibody reaction. It is the antibody reaction that destroys our organs. You need that reaction to stop and small amounts of CC like from toiletries, glues, clays etc will keep that reaciton going.

[MyMississippi]

You really do need to avoid gluten in your shampoos, toiletries lotions etc as well as food. When you are showering it is really hard to avoid having some soap or shampoo get into your nose or your mouth. When you use lotions you apply them with your hands leaving some residue on the hands. When you put your hands into your mouth or use them to eat with you will then be transferring the gluten ingredients into your system. Celiac is an autoimmune disorder. It takes only a microgram to cause the antibody reaction. It is the antibody reaction that destroys our organs. You need that reaction to stop and small amounts of CC like from toiletries, glues, clays etc will keep that reaciton going.

If a person is diligent to WASH their hands EVERYTIME before they eat---- there won't be any lotion on their hands----

The Celiac Disease Center of Columbia University says that shampoos, toothpaste, dental products, make-up (except lipstick), soap, lotions are all SAFE.

[JNBunnie1]

If a person is diligent to WASH their hands EVERYTIME before they eat---- there won't be any lotion on their hands----

The Celiac Disease Center of Columbia University says that shampoos, toothpaste, dental products, make-up (except lipstick), soap, lotions are all SAFE.

Dental products? Toothpaste? I'd love to see what they've published that claims that.

[MyMississippi]

Dental products? Toothpaste? I'd love to see what they've published that claims that.

You can find it in "The New Ultimate Guide to Gluten Free Living " booklet published by the Celiac Disease Center at Columbia University.

2nd edition published 2008, page 43

[ang1e0251]

I would like to add that even thouhg I have been gluten-free for nearly a year, I have been reading "Living Gluten Free for Dummies" this week. I have learned so much from it and in plain language! I wish I had read it last year when I was new to this. I was lucky to have a mentor. I think this book would be very helpful to you. Don't be intimidated by it's size, I know you are very busy with school right now. Just flip to the parts that interest you. I has helpful info on understanding the disease, shopping and food preperation and so much more. If your library doesn't have it, mine didn't, ask them to get for you through interlibrary loan. Another library will loan it to them for you. It's a lot of info in the beginning but hang in there, ask a lot of questions on the forum and we will help you through it.

[Guest Mightymouse1500]

I was diagnosed about a year ago and I totally identify with how you feel. Initially, I did not know what gluten even meant. So on the trip home from the doctor's office, I stopped at Barnes and Noble to pick up some books. I found that "Eating Gluten-Free for Dummies" was the most useful book I found. The reason I felt it was useful is because it broke everything down into easy to understand information. So I purchased that one along with a gluten-free cook book. It took several months to find my way. In the beginning, I found it most useful to eat things that I knew for sure to be gluten-free fresh meat, fresh veggies & fresh fruit. Stay away from deli meats and cheeses. For example, deli ham may be gluten-free but could have Gluten from contamination. For example, if the person in the deli handles something with gluten, such as bologna then handles the gluten-free ham, the gluten-free ham is no longer gluten-free. So I stick to packaged lunch meats that specifically say gluten-free on the package. Essentially, I researched, researched and researched to learn more. As I learned more, I was able to increase what I could prepare and eat. Some important things that I found to help: get a new toaster to use only for gluten-free breads because using a toaster that toasts gluten products can cause cross-contamination, I even have a separate part of the kitchen set up as gluten-free food prep only. All the gluten-free baking supplies, gluten-free boxed foods, etc. are in this area of the kitchen to prevent cross-contamination. Also, no non-gluten-free foods are prepared on these counter tops so there is no risk of cross-contamination while preparing foods. Dinning out has really changed for me too. I use a dietary card that I found on the internet, which is very helpful. However, I have found that I would experience a severe reaction every time the server I had did not take the time to listen to what I had to say. So, initially, I had made the personal decision, for my health, to politely leave and go to another restaurant. I chose to go to restaurants that showed their support and took the time to listen and ask questions. Over the past year I have found only two that took the time to listen and ask questions. These are the restaurants that I mainly go to. I learned to be careful at national chain restaurants. One in particular puts blue cheese on their gluten-free salads. Also, I always insist on the server taking my dietary card to the cooks even when ordering off the "gluten-free" menu. This is because I ordered off the gluten-free menu and was told by the manager that the sauce for the dish contained wheat. The manager mentioned that had I not insisted on taking the dietary card back to the cook, they would have never discovered this sauce had wheat in it. It seems like a lot, but personally, I would rather be healthy than extremely sick for almost a week from a small contamination. Good luck!!

[one more mile]

I have a 20 year old kid and was once 22 myself. Trust me, you are far from helpless.

I gave up wheat in my 20s then went back to it. Back then many people thought that wheat was an addictive food.

After being sick and having tons of differnt doctors tell me what was wrong I finely figured out that what was mainly making me sick was the gluten. Taking a nap after eating pretzels is not normal when you just slept 10 hours.

I have been Gluten free (gluten-free) for about two months now. Twice I have accidentally eaten it and felt like crap really fast.

I am amazed at how much better my health is. My family is amazed. I urge you to not just put up with the stomach achs but to learn to live with out them. You may find that a host of other problems area also being cause by the gluten. Things that most people would never think are connected.

I grip from time to time about missing gluten but when I think the bite though and remind myself of how much better I now feel I would never want to go back to that.

At 22 you have better things to do in life then deal with a stomach ache. At 22 you need to be out in the world exploring, not tied to a bathroom. At 22 there is a big world out there to get to know, friends to hang with and

new experiences to try. Eating Gluten will most likely rob you of that. You did not have the choice to be well before

but now that you know what makes you ill you have the choice.

(I am currently only "tied" to a bathroom 35 minutes after I get up in the morning, not all day!!!!)

The people here gave me a great deal of information and helped me with even my dumb questions. Please ask them all it is the only way you will get the answer. I am glad you found this web page.

one more mile