Diagnosed After 18 Years? Let The Depression Begin

[fire-chickens]

I was recently diagnosed with celiac disease after 18-19 years and no doctor or gastroenterologist when I was younger either took the time to realize in the blood test that I had celiac and mis- diagnosed me with a bunch of other sutff. Now I'm not very happy regardless of whether I found out why I'm almost 20 and less than 100 pounds. I am VERY upset about this, I feel as though I've had everything taken away from me, I've eaten normal people foods for my whole life, gone out to eat with friend and family now i cant do any of that without eating either nothing or garbage. i hope there's a way I could sue these doctors for basically wasting hundred of thousand of dollars on trying to figure out why i was always so thin no matter how much I ate, and essentially ruining all the qualities of life i could have have and the suffering ill endure for the rest of my life. now I'll basically have no life, I can't go out with friends because they'll know i can't eat with them. when I turn 21 I can't go out with my other 2 brothers and all my friends and get drunk and hammered and party til my liver falls out. nobody wants to date a person whom is as skinny as me so I've given up on really trying to find a girlfriend, and after reading what could happen if this goes un-treadted, for all I know I'll never look normal, which I'm almost positive i probably wont because I've had this my whole life. for all i know i have cancer. and if after a few month I don't gain a pound ill give up on it, i cant do this for the rest of my life, if my intestines are too far damaged. I don't want to live life the way I "should" with this stupid disease. people tell me its not the end of the world, but they dont know what its like and to me, this has become the end of MY world. now I'll probably die with cancer or some debilitating disease releated to it. from this day on i feel as though its going to al go down hill, and there's NOTHING I can do about it. and if i say im depressed ill me commited to a damn hospital and treated even worse that now. i can't do this diet, I'd really rather die, because it bothers me that much that all these years i could have lived and looked normal excelled in my highschool wrestling instead of dropping out of the team because of weight loss.

[alex11602]

I am so sorry that you are feeling this way about the disease, but I want to say that it does get easier even though it may seem like it now. I am 23 and was just found out about 4 months ago even though I have been sick much longer, my two children were also diagnosed. My youngest was extremely sick and very underweight with some of her systems failing, but with following the diet she is now up 7 lbs in 4 months(a big deal when you are 18 months old) and is running around like a normal child instead of sleeping for 20-22 hours a day. I am telling you this so that hopefully you will realize that it is not the end of the world, it's more like a new beginning.

I am not sure what you were eating before, but there are many foods that are naturally gluten free like fruits, vegetables, rice, potatoes, meat, dairy(even though some do not tolerate it right away).

From reading on these boards it is extremely common to not be diagnosed for years after the onset of symptoms, I believe I read that the average is 9 years, but for some it takes much longer.

As far as intestinal healing, my understanding is that while it may take up to 2 years you will heal if you follow the diet. I understand that it is a tough pill to swallow, but at least you have an answer to what has been making you sick and now you can work on getting better. Please don't give up hope, there are alot of people on here who have helped me with questions and they are here to help you too. Welcome and good luck.

[GlutenFreeManna]

I was recently diagnosed with celiac disease after 18-19 years and no doctor or gastroenterologist when I was younger either took the time to realize in the blood test that I had celiac and mis- diagnosed me with a bunch of other sutff. Now I'm not very happy regardless of whether I found out why I'm almost 20 and less than 100 pounds. I am VERY upset about this, I feel as though I've had everything taken away from me, I've eaten normal people foods for my whole life, gone out to eat with friend and family now i cant do any of that without eating either nothing or garbage. i hope there's a way I could sue these doctors for basically wasting hundred of thousand of dollars on trying to figure out why i was always so thin no matter how much I ate, and essentially ruining all the qualities of life i could have have and the suffering ill endure for the rest of my life. now I'll basically have no life, I can't go out with friends because they'll know i can't eat with them. when I turn 21 I can't go out with my other 2 brothers and all my friends and get drunk and hammered and party til my liver falls out. nobody wants to date a person whom is as skinny as me so I've given up on really trying to find a girlfriend, and after reading what could happen if this goes un-treadted, for all I know I'll never look normal, which I'm almost positive i probably wont because I've had this my whole life. for all i know i have cancer. and if after a few month I don't gain a pound ill give up on it, i cant do this for the rest of my life, if my intestines are too far damaged. I don't want to live life the way I "should" with this stupid disease. people tell me its not the end of the world, but they dont know what its like and to me, this has become the end of MY world. now I'll probably die with cancer or some debilitating disease releated to it. from this day on i feel as though its going to al go down hill, and there's NOTHING I can do about it. and if i say im depressed ill me commited to a damn hospital and treated even worse that now. i can't do this diet, I'd really rather die, because it bothers me that much that all these years i could have lived and looked normal excelled in my highschool wrestling instead of dropping out of the team because of weight loss.

Welcome to the board. Take a few deep breaths. Many people here have been through what you have and things have turned around for them. Celiac disease may be causing your depression and it could go away when you go gluten-free. This is not a death sentence. This is the begining of LIFE. You can STILL go out when you turn 21 and drink. There is gluten-free beer and vodka and wine and lots of other mixed drinks you can have. Where do you live? There are so many restaurants theese days with gluten-free menus and more being added all the time. Sometimes the food is boring or bland but it's not ALL aweful. Check out glutenfreeregistry.com to find restaurants in your area.

There are so many "normal" foods that happen to be gluten-free too! Lots of snack food and plenty of junk food. Tortilla chips and salsa or guacamole, popcorn, potato chips, chocolate! This board is a great resource for ideas. I hope you'll stick around and get the support and encouragement you need to make a positive change.

[kwylee]

from this day on i feel as though its going to al go down hill, and there's NOTHING I can do about it. and if i say im depressed ill me commited to a damn hospital and treated even worse that now. i can't do this diet, I'd really rather die, because it bothers me that much that all these years i could have lived and looked normal excelled in my highschool wrestling instead of dropping out of the team because of weight loss.

I can feel how distraught and depressed you are and I am so sorry that you're having to go through this. I feel it's a good thing to give yourself time to rant and vent right now, and I can't think of better medicine at this point, as opposed to holding these feelings in. It's easy to become overwhelmed. But please know that there are MANY MANY MANY on this forum who will understand what you're going through and can counsel you on Celiac disease, having been JUST WHERE YOU ARE right now. Reading your post, I was wondering what symptoms you have in addition to being underweight. In any event, adopting a gluten free lifestyle will allow you to heal, make you feel better and in all probability increase your body weight to a point where you are happier with the outcome.

[Takala]

If you make your own life, you have 2/3rds of it remaining.

I have no idea where you live, but where I live, if I drive 20 -30 miles I can find several different types of gluten free dining where I can get my food and my spouse can get regular or he can opt and get gluten free with me, including pizza and Chinese, as PF Changs has a gluten free menu, and there are also pizza places with the gluten free crust option, and we have a local burger chain that does understand allergy/intolerance severity and can make me something that I can eat on lettuce sans the bun. I don't drink, but many places now carry gluten free beer, plus some other types of alcohol are gluten free.

Suggest you google search "gluten free restaurant name of nearest town" and start researching. Also suggest you learn to initiate and ask people to go with you to where you can eat, instead of them taking you to where you can't. Worst case scenario, plan to live as an adult where the food culture is better, and learn to explore it.

If you want to date, learn to cook. This is considered an attribute and not a negative liability by most women.

I realize this may be difficult in some parts of the country. When we travel, I automatically carry a lunch cooler packed with something I can eat if it does not pan out. We've literally gotten stuck in a blizzard, slowly going over Donner Pass when the Highway Patrol closed the main highway, and yet we had a stash of food to munch on. This is basic mountain behavior around here, even for non celiacs, but you'd be surprised at how many visitor people don't think to do it. Before the spread of fast food joints across the landscape, packing lunches was commonplace. (yes, I am that old to witness that there was a time without McDonalds and Starbucks on every corner. People were healthier, too.) If you can't stand the gluten free bread available commercially, learn to whip up a gluten-free microwave bun in under 2 minutes, and pack it with you.

If you stick to the diet, you will heal and look normal. If you don't, you won't. Being glutened makes people feel bad. If you have to get stuck with an auto immune disease, this is the one to have, as it is treatable, whereas the others are not without much more bad side effects.

P.S. don't eat hospital food. they're clueless.

[Caremate]

fire-chickens I can relate to you. I'm 21 and just found out, been in and out of doctors for years (even had a hard time as a baby with formulas) So I've probably had it my whole life as well and doctors never caught it or called it something else. I live in a house with 4 other people who are not gluten free so staying gluten free and away from the possibility of cross contamination seems like a real issue for me. I'm also pretty skinny for my height (I'm a girl though lol) 3 years ago I was only 105 lbs. lots of bread (and alcohol lol) I gained about 20lbs but now I can't have that because of my diagnoses and I'm down another 6-7 lbs (in just 3-4 weeks) it really is frustrating and at times I feel there is no point. One of the other problems that can go hand in hand with Celiac is Thyroid disease and both my mom and aunt had that (both had radiation) my moms turned into cancer and she had to have chemo. I feel like no matter what I'm bound to end up with it. Same with things like anemia and fibromyalgia (both in my family) but at the same time it makes me want to do this diet even more (even though it sucks) I tried going out to a restaurant with my friends after work one day and it sucked I wont lie. I ordered a glass of wine and then drooled as I watched all my friends eat steak and chicken fingers. >_< decided not to do that again until I'm brave enough to try a gluten free menu at a restaurant lol Were both in a similar boat and if you ever want to vent/talk let me know. Best of luck to you

[BioNerd]

I'm 24 and was just diagnosed this week. Honestly I couldn't be happier. I finally know what's wrong with me, not only that, but I know how to heal it! The fact that I simply need to change my diet a little, and watch what I eat is far better than I could have hoped. My boyfriend has crohn's disease and unlike him, I will not have to take immune suppressors, antibiotics, or any other medication (none of which he can afford at the moment). So personally, I'm thankful for my diagnosis.

-Jessa

[Jenniferxgfx]

I'm in my 30s and just recently figured it out. My tests were negative too, and I've had symptoms since I was a baby (severe asthma). Things got worse and worse till I couldn't hold a job because of the pain and fatigue, and doctors just blamed everything on fibromyalgia and my fatness. Actually, fibro and fatness are symptoms of my gluten-related illness. I really really sympathize with your anger. I have a lot of it, too. I also wish we could sue or somehow get some kind of retributions for all our doctors' ignorance. At this point, I might settle for a genuine apology by mail.

But This could be the beginning of the rest of your life. You've found out at a good time, when you're still growing and your body's younger and a little more resilient. You can hopefully heal and feel better. I've been gluten-free for a month or so, and I feel better than I've felt in YEARS. I don't know when or if I'll be able to go back to my career, but right now I'm just focusing on relearning to cook with my newfound energy (there's so many gluten-free cooking blogs now! This is a great time to go gluten-free! So many gluten-free products, and restaurant menus!) ...I'm not healed, and maybe some problems are permanent, but there's a LOT I can improve, and you can too.

The loss of convenience DOES suck. This is also a great way to learn who your real friends are. I agree with the comment about learning to cook-- its a surefire way to a person's heart

This is a great forum. It's nice to commiserate, but I've found it so helpful just to hear I'm not alone. There's a whole grieving process because this is a huge life change, but be patient with yourself. Congrats on having some answers! Welcome to the board! Vent away!

[lynnelise]

I realize you are shocked and upset by the diagnoses, but this is not the fate worse than death you think it will be. I go out to restaurants and occasionally bars with friends, I travel, I go to concerts, parties, cook-outs, amusement parks, hiking, and so much more! In fact I'm hard pressed to think of anything I did before than I can't do currently perhaps with small modifications. Tons of restaurants have gluten-free menus. Bars have wine, liquor, and cider. A lot are now carrying gluten-free beer! Cruise ships even offer gluten-free accomodations these days!

Cheer up! Stick strictly to the diet and you will heal and gain weight. BTW I used to work with a guy that weighed 107 lbs. and he had no trouble getting dates! It's all in your attitude! Be confident!