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I'm Feeling Lonely Because Of Celiac
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I am a 19 year old guy, currently a college student (home for break though). I have had celiac for five years, so I'm familiar with the disease and everything. I also have Type 1 diabetes, which I've had for six years. So I got two life-changing diseases within one year of each other.

Basically, I am sick and tired of having these diseases. I have no one to talk to and I feel lonely. All of my friends have told me that they think I have a great attitude about life while dealing with these.....I always act positive. But on the inside, I cannot stand it anymore. Every time I go out with friends, I have to bring my diabetic stuff and on top of that, I cannot just eat anywhere because of celiac. I have to make plans all the time and call restaurants or just order salads, which makes me and my friends feel awkward. When I'm out with friends and we're all hungry, they ask where I can eat at and it just makes me feel like crap when they have to adjust plans for me. It's torture being around girls when eating and then you have to tell them that you just can't eat pretty much everything.....then they think it's weird. There's so much more too, but I am really just getting tired of it.

I don't know what I need, but I feel terrible and alone. I went to a couple support group meetings but there really wasn't anyone my age there and I couldn't relate. One time in the dining hall at college, I met a girl who overheard me and a friend talking about gluten and she said she was celiac too, but I was so stupid and didn't become friends with her and I've never seen her again. I just want to meet someone who also has celiac or a gluten intolerance at the least so I don't feel so alone, but I can't find any (they don't just come up). I also was asymptomatic, so if I ever do eat gluten, I don't feel bad, which is usually motivation for others.

Sorry for the rant here, but my point is that I have two diseases that take a huge toll on my social life and interactions with people. I am really, really getting tired of this and I feel so lonely because there is no one to really talk to about it. I'm losing motivation (not for life.....but I'm losing motivation to stay gluten-free). How do I deal with this feeling/lack of motivation? I really need help. Thanks!

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Hello, I'm a 17 year old girl with Celiac, and I know just what you mean. I have a cousin with Celiac and Type 1 Diabetes, and she also is often told she has a great attitude about life. Myself, having only Celiac cannot fully relate on a personal level, but I see what she really goes through. She is asymptomatic as well, so she often cheats and eats gluten.

I get very sick when I eat gluten, so I can't ignore having Celiac. I feel awkward with my friends, and even my family, when they have to change plans just so I can eat. They are all very accomodating and kind when it comes to finding food I can eat, but its just a hassle. I went to a party last night, and all the food they had was planned around me. It's very nice that they will do that for me, but I feel bad knowing they went so far out of their way just to feed me.

I live in a pretty rural area, and I feel like my cousin and I are the only ones with Celiac for miles and miles and miles. I want to find a support group, so I can find people that are going through the same things as I.

Don't lose motivation to stop eating gluten-free. As much of a pain it is to find things to eat, being healthy is certainly worth it!

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Welcome!! and do not be sorry for venting. :) We get to do that on here. You have every right to squawk a little ---as you have had to deal with so much at such a young age.

I cannot imagine how hard it is for you having two AI diseases that require dietary compliance, especially when you do not have an overt reaction to gluten. If anyone would be tempted to cheat, it would be you. So, I applaud you for doing such a great job and taking excellent care of yourself.

Is there a celiac support group in your area? If so, maybe you should go!

I know someone who deals with both diabetes and celiac disease and I'll get him to chime in here.

You are not alone, kiddo--we are here for you.

IH

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Welcome to the board! Do you mind an answer from an adult? Because I sure feel the way you do sometimes.

I'm going to a party tonight. They will serve beer and I will have to bring my own cider if I want something to drink. I've eaten dinner ahead of time because I will not be able to snack at the party. Even if there is gluten-free food there will be cracker crumbs everywhere because nobody cares that their crumbs make me unable to eat. I will have a bag of dried fruit in nuts in my purse in case the party goes late and I get hungry. I HATE that, not being able to even pick up a stupid carrot stick for fear of CC. I will enjoy the company though, so that's why I'm going.

You have to enjoy the friendships you have, even if they're not celiac/diabetic and don't fully understand what you're coping with. It sounds like your friends are pretty cool if they go out of their way for you. And yeah, I know that salad dinner all too well. And that awkward feeling that I'm asking my friends to change plans...again. Thing is, my friends really don't mind. I bet yours don't either. We like hanging out and the food really isn't that important.

As far as dating, we have a built-in jerk detector. If a girl is more interested in what you eat than who you are, you know right away that she is shallow and probably not worth your time. I don't even bother with a second date if the guy gives me a hard time about my diet. I mean what will he give me a hard time about next??? There will be a time when a girl will come along who thinks you're awesome, and she won't care in the least that you eat a lot of salad and carry insulin with you.

On the bad days, you just gotta grit your teeth and hang in there. Come here and we'll commiserate because we all go through the same awkward social stuff.

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Welcome to the board! Do you mind an answer from an adult? Because I sure feel the way you do sometimes.

I'm going to a party tonight. They will serve beer and I will have to bring my own cider if I want something to drink. I've eaten dinner ahead of time because I will not be able to snack at the party. Even if there is gluten-free food there will be cracker crumbs everywhere because nobody cares that their crumbs make me unable to eat. I will have a bag of dried fruit in nuts in my purse in case the party goes late and I get hungry. I HATE that, not being able to even pick up a stupid carrot stick for fear of CC. I will enjoy the company though, so that's why I'm going.

You have to enjoy the friendships you have, even if they're not celiac/diabetic and don't fully understand what you're coping with. It sounds like your friends are pretty cool if they go out of their way for you. And yeah, I know that salad dinner all too well. And that awkward feeling that I'm asking my friends to change plans...again. Thing is, my friends really don't mind. I bet yours don't either. We like hanging out and the food really isn't that important.

As far as dating, we have a built-in jerk detector. If a girl is more interested in what you eat than who you are, you know right away that she is shallow and probably not worth your time. I don't even bother with a second date if the guy gives me a hard time about my diet. I mean what will he give me a hard time about next??? There will be a time when a girl will come along who thinks you're awesome, and she won't care in the least that you eat a lot of salad and carry insulin with you.

On the bad days, you just gotta grit your teeth and hang in there. Come here and we'll commiserate because we all go through the same awkward social stuff.

^This made me smile! Probably because it's so true and so very well said, Skylark. Yes...what she said! ;)

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Thanks for all your responses, they did help. Once again, sorry for ranting.....it's literally been in my head for five years and I needed to get it all out. I go to school in a large city so there's a lot of options for eating, so I guess I have it pretty good. It would be so nice to meet someone at my school with celiac though.....there are a few diabetics, but I'd much rather have diabetes than celiac. It's much easier. But thanks for all your responses, they did help.....especially the "built in jerk detector" when dating.

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Hi, and welcome.

I have been dealing with T1 diabetes for 26 years, and have been gluten-free for 12, following a diagnosis of celiac disease.

Of the two, celiac disease has had more impact on my life--pre diagnosis. I was very sick, and for years, nobody could figure out why. As time went on, my symptoms continued to worsen. At the end, I was barely able to function.

These two autoimmune diseases have a statistical correlation. If you have either one, you likelihood of having the other is greater than if you don't. It has been suggested more than once that anyone with T1 should be screened for celiac disease, whether they have symptoms of not.

Both conditions involve dietary restrictions. Of the two, celiac disease is the more rigorous. As a diabetic, I can have occasional sweets, as long as I factor them into my total carbohydrate content, and balance them with insulin. A person with celiac disease must never have any gluten at all. You can not "cheat" occasionally.

Prepared gluten-free baked goods are often higher in carbohydrates (and fat) than their regular equivalents, so we have to eat less of them.

I don't let my life revolve around food. In social situations, it is the people that matter, not what they are (or are not) eating. Have a drink in your hand, and most people won't notice that you aren't eating something. If offered unsafe food, I politely, but firmly, say "no."

At first, dealing with each one was a big deal. Today, it just isn't.

I do realize that, at 19, you are at a different stage in your life than I am at 57. Peer pressure at school can be tough. But things will work out for you.

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Thanks for all your responses, they did help. Once again, sorry for ranting.....it's literally been in my head for five years and I needed to get it all out. I go to school in a large city so there's a lot of options for eating, so I guess I have it pretty good. It would be so nice to meet someone at my school with celiac though.....there are a few diabetics, but I'd much rather have diabetes than celiac. It's much easier. But thanks for all your responses, they did help.....especially the "built in jerk detector" when dating.

Glad you found that funny/helpful. B)

Please don't apologize for ranting. It's why the most popular section of the board by far is called "coping with celiac". As you well know, celiac is not something you can just forget about or ignore in our bread-centric society. This is where you can come to get the frustration out and we all completely understand!

Please come here and ask for help when you need it. That's much better than eating gluten. I really hope you can find a celiac friend or two but if not, you now have hundreds of celiac and even celiac/diabetic pen pals!

Answering your post helped me too. I got to the party last night and sure enough there was bread and cheese on the appetizer table and crumbs scattered everywhere. How do people make so many crumbs??? :lol: I could have eaten the olives and corn chips/salsa if the hostess had happened to put the cheese board somewhere else, but no such luck. Since I had replied to your post just before I left I was fully expecting it so it didn't bother me. I had a great time. :)

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I feel the same way, i am a 22 year old female. You just cant let things get you down. Its good to have friends that support you, i have some who think i am kidding about CC and just go "well you can just eat it now it won’t hurt you". I am a nurse so its good because i get to rant to all my co-workers, and in-turn they understand everything more. I always eat before i go out, and bring a snack bar with me everywhere i go. I get down sometimes to and think how nice it would be to just take a pill everyday and then eat everything i see :D how great would that be ! (We can dream can’t we ?? haha). I don’t know why girls would think it’s weird, you’re looking after your health to look and feel better, just like they do when they do their hair and make-up and eat salad to stay fit. Whenever I feel down I go to work (I work on a Peds floor) and see all the very sick and dying kids then get mad at myself for feeling like this, we get to do what we want see who we want live where we want. I have had the same issue, I cant seem to find anyone around my age who has celiac too, and I feel adults don’t really get it sometimes. We don’t plan our lives like they do, so when its 3am and ur hungry and all your friends want to go to a burger joint and just look at you, you just want to die. I always bake some really good like banana bread and cake then freeze it so when I am hungry I can just pull it out and have some normal tasting food. I have the same lonely feeling at time, even though I have a big family that supports me lots of friends and a boyfriend who does everything. So I don’t think there is really anything we can do, well I bought a bunch of pets and they make me feel better :P . Just remember you need to do it, people are fighting for their lives every day in the hospitals you can’t let food get you down. Maybe volunteer at a cancer floor or on a Peds floor, it might bring up your spirits to help other and see people worse off and still happy and enjoying life to the fullest. Just a thought. Hope this helped a little, I feel for ya

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sorry for all the bad spelling :s

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If you can't find a support group on campus - start one ..

Put a sign up at Student Health, the Pastoral office of any campus ministers, the Notice Board near the Food Hall, the College pharmacy/drugstore .. Pro-active! ... You have done very well, at a young age - keep it up!

College life can be a pain in the butt sometimes, so swing it around to your advantage - take charge ... I think that it would be unlikely that you are the only student in this predicament.

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We all feel this way a lot of the time I think. Young and old, it is so hard. I just went to a swim meet with my young kids and I felt the same as you, that I have to explain my diet and life issues. Sometimes I feel people must think I'm wierd. I think the good thing here is you have awsome and I mean awsome caring friends. We are teaching people to be caring and sensive to other peoples' needs as they learn to be caring and sensive to our needs. Take those teenagers from New York for example, they were clueless to being sensitive in any respect. The goal in society is to teach people to be sensitive to all peoples' needs. These are our needs and we can't help it. We are doing nothing wrong. We have to eat this way and yes it is a pain. But the big D is a bigger pain.

The Celiac Disease Foundation has some young people blogging right now. Look up their blog and see if you can meet and comunicate with them. I think 2 kids are teaching 2 newbie kids how to live and eat gluten free. Call the Celiac Disease Foundation or e-mail them to learn about it.Also there is a young girl who has a blog called Gluten Freed. I met her at CDF conference. She is awsome. See if you can contact her somehow. PM me if you need more ideas and I'll work on that for you. Hang in there. I think you are a strong person. Eating out isn't everything in life. There is so much more. When you get out of college it will be easier and willnot be such an issue.

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I know your pain exactly. I'm 18 and I find it hard to imagine a girl who will actually support my disease and deal with all of my set-backs. I get very depressed when I think about traveling, because a dream of mine is to travel to Japan and I don't know how much I'll enjoy it thanks to Celiac. We just have to hang in there man and be grateful that we don't have even worse things happening to us. I've felt very lonely ever since I've been taking my disease very seriously, and it's hard to be completely happy, but I honestly do think things will get better as time goes on and there will always be someone that has a comparable situation. Keep going.

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Hi! I'm a 20 year old girl with celiac so I can relate. It sounds like your friends are willing to go to places where you can eat so I wouldn't worry about adjusting plans..people are flexible. Also don't worry so much about food. If you think you can only eat a salad, then eat before you go and ordering the salad won't seem like such a big deal. Or bring a protein drink with you (I love Orgain, it's lightly sweetened so I'm not sure if this is a good idea for your diet).

As for feeling alone at college.. I've met about 6 other people with celiac or gluten sensitivity at my school..and my school isn't that big and in a rural area. It really is great having a couple friends who know exactly what I'm going through. I've also met countless people who live with/are friends with/are related to someone with celiac. Any time you make a connection like that you should try to reach out to that person...email/facebook/whatever can get you in touch with them.

I also recommend talking to your school's dining service, they probably have a special diet chef on staff who might be able to help you connect up with other gluten free people. The chefs at my school actually prepared an individual meal for me every dinner because I was struggling to get a safe/healthy meal in the regular lines. It was like having a personal "gourmet" chef (compared to the mass produced mush they give everyone else). My friends would always tell me, "AH I'm so jealous." And I would just look at them like.. don't be. :D

Wow sorry this was a novel. PM me if you ever need to talk it out.

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Dude, from a guys perspective i feel your pain. What i just read right there was story of my life lol ive gone through exactly what you did. The girls, the having to bring it up, basically it taking over your life. I remember this one time i was at school and this girl had these brownies and she was literally putting it close to my mouth and im like uh, no thanks. I didnt want to tell her cause she'd think im crazy and i didnt want to go through the whole process of explaining.

Anyway, i turned it down and she kept saying "why? just eat it" and i would just put her hand down. A few weeks later it happened again. Coincidentally she had a bag of chips that had gluten in them and she offered. I said no im fine, and she was like "oh my god, you never eat!" and i had nothing to say but to smile it off. On the inside, i felt like crap. Sucks we cant enjoy something so small sometimes. When you meet a girl that has celiac, keep in touch. I already have a girlfriend but if i ever meet someone who has the disease i would probably be all over her lol id love to be friends with you if you want? remember you have a whole family here, im not on much but seeing this post makes me want to actually be much more involved (:

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You are definitely not alone in this. I don't have type 1 diabetes, but I am pre type 2 diabetic (thanks to a hormonal condition I have) along with being gluten intolerant and I know how tough it is to not only have to be concerned about keeping your blood sugar stable, but also having to stay away from anything with gluten in it. Also, as someone who just graduated from college, I know how frustrating it is to be a young adult with these conditions, especially when it comes to going out with friends and them not understanding what it's like. As far as motivation goes, try to focus less on what you CAN'T eat and more on what you CAN eat. Even though you didn't have any symptoms before you stopped eating gluten, also remember that if you truly have Celiac, you can get really sick if you go back to eating gluten. Like I said at the beginning, you're not alone in this and I really do hope that things start to look up for you =]

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I am hypoglycemic and I have celiac disease. No one ever asks me where I can eat when we're out. Because of my hypoglycemia I have to have a balanced meal so I generally end up having to eat wheat and I get sick. I have a horrible migraine because I had to eat wheat yesterday. You are very lucky your friends care.

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I'm 18 and Non-Celiac Gluten Intolerant, and I'm in the process of trying to work with my college about mandatory meal plans for freshmen. They can't properly accommodate so it's looking like I will most likely have an exemption, which is what I wanted, but it's a bit depressing too as it means I can't really eat with my friends in the dining hall. It sucks, but I'll do whatever it takes to stay healthy. Hang in there...the diabetic restrictions must add to the intensity.

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If you can't find a support group on campus - start one ..

Put a sign up at Student Health, the Pastoral office of any campus ministers, the Notice Board near the Food Hall, the College pharmacy/drugstore .. Pro-active! ... You have done very well, at a young age - keep it up!

College life can be a pain in the butt sometimes, so swing it around to your advantage - take charge ... I think that it would be unlikely that you are the only student in this predicament.

If your school has a website with a forum or even a classified section, post to ask if anyone would be interested in a support group. You could also use Facebook and publish your post to the whole school.

I've had food allergies my whole life and recently gave up the gluten that seems to be causing my fibromyalgia symptoms (they're slowly going away since I gave it up). I have found that the people who are worth your time, male or female, will not judge you for refusing certain types of food. I have never been turned down for a date or dumped because of it either. People may think it's weird if you don't explain why you don't eat certain things, but if you're willing to explain, those who are worth it won't judge you for avoiding gluten.

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I am hypoglycemic and I have celiac disease. No one ever asks me where I can eat when we're out. Because of my hypoglycemia I have to have a balanced meal so I generally end up having to eat wheat and I get sick. I have a horrible migraine because I had to eat wheat yesterday. You are very lucky your friends care.

Sheesh. Those don't sound like very good friends. True friends would not want to make you sick. If you've explained your condition and vocalized your problems with their restaurant choices, they should try to accommodate your food needs. Sometimes they will fail or will want to try a place where you cannot eat, but many restaurants will understand if you bring your own bread or will try to accommodate you. It's always good to keep a snack on hand in case there's an unplanned meal.

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Just seems to be one big list of illness all triggered from the same point One positive change I've noticed thus far since cutting out gluten is that bloating seems to have gone down and bowel movements are better. Still getting headaches and muscle twitching, which could be as much a withdrawal symptom from gluten as anything else.  Some sites were suggesting stopping exercise whilst withdrawing but I can't face that as it's the only thing keeping me going at present. Again will keep going as-was and see what happens. Then to top it off it sounds like the next step is the biopsy - I'm scared of being put out for the procedure as a member of family went into hospital a few years back for something supposedly routine and never came back out. From what I've been told it's important to have done though as it shows just how broken the villi are so another thing to worry about in the meantime. Social life Seems like despite there being some gluten free options in certain restaurants (granted better now than years ago) I'm going to be hugely limited in food options. Either sitting on the side looking on or just plain not able to go out much anymore. Already had the first hitting-home moment watching colleagues eating pastries that were brought in while I just have to look on... then it dawns that this is never going to get better... urghhh Family life I'm really struggling to accept this lifelong illness and loss of health and it's taking a toll on the people around me at the moment. They won't be going gluten-free so will have to take my chances with the mixed kitchen environment; already gone with split toasters etc. so can't do much more than that. Dating Basically seems game over on that front, unlike many who are diagnosed with understanding partners \ spouses I'm still in the dating game, which is judgemental enough as it is without all the complications that the gluten issues bring. I'm reading even kissing someone with lipstick \ make-up is apparently a big no-no... once any date hears that they won't be coming back... forever alone status confirmed is how it looks right now. Overall feelings I still can't quite figure out if this illness was in me all along and just hasn't flared up enough to notice until now or whether the extreme stress I've been under for the past year or so has triggered it. If the second scenario is correct I can't stop thinking about the events that all led up to this almost year-long bout of ill health and life-changing diagnosis. Can celiac be brought on by stress alone or realistically was I always a ticking timebomb just waiting to be set off? For every person I see that's had a positive change after cutting out gluten (and getting by with reasonably achievable adjustments) there seems to be 10 others with horrible side-effects and long-term complications. Right now the future feels rather bleak - like all hope just been taken away. Help???
    • It sounds like you're doing great. That's amazing that your anxiety has decreased like that. You're obviously doing something really good for your health. With the other things I'm sure they will get better in time. After I gave up gluten I had a bad year but overall it got better. Things like anxiety and insomnia massively improved over time with being gluten free. However, going Paleo (which you are on your way to with the no dairy too) really helped my anxiety, as did running and self-taught acupressure. In particular I found processed gluten free foods were awful for my mood. I know you have to find your own way but I really want to encourage you to see how you feel without that if you haven't already. I also can't afford therapy but when I did have it, that helped too but just being well, gives you the chance to sort your own thoughts and feelings out even without a therapist. Good luck
    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of grains, but I have reintroduced rice using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My Paleo+Fasano diet has been assessed by a registered dietician to include every nutrient and micronutrient that I need so I guess having a really good diet is helping too. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. A lot of the steps I have taken to avoid gluten would be seen by some as over the top but I can say that for me, when I introduced these steps, that's when I stopped getting reactions and it's all worth it. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
    • Hello all  I have been living gluten free now for 6 months, as directed by my family doctor after a 6 week elimination diet revealed that I may be celiac or gluten sensitive. I was tested by blood work,  which showed nothing, and am awaiting a specialist to get a biopsy done. I am no where close to getting into see her as it is cased as a non emergency. I have been constantly having bowel problems, rashes all over my body, low iron, weight fluctuations, no energy, depression  and anxiety now for 6 years. Have been a huge nuisance(imo) to my doctor requiring constant antibiotics for this,  creams for this "mystery rash" and either laxatives for constipation that would sometimes go on for over a week to diarrhea that would keep my home- no in between . It hasn't been easy, especially whenever doctors are so quick to blame all symptoms as mental illness. Even though I have continuously told them I feel my issues are something simple...  not a mental illness. Anyways long story short, after going gluten free I have had somewhat Nnormal bowel functions, less rashes around my stomach, been able to cut back drastically on my depression medications and anxiety meds, and energy has taken a huge improvement  which all is great! But .... I am constantly HUngry have gained 20 lbs and can no longer fit into most of my clothes. This is really bothering me because I am afraid I am approaching a weight problem.  At only 5'5" weighing 165lbs is large to begin with. Especially whenever I have two children and have only EVER weighed this much while being pregnant with them. I am 26 years old and just tired of not being myself. I am physically healthy and just would like my body to act it. Any help would be greatly appreciated, as I said I am only 6 months into my journey and have definitely re exposed myself to gluten (accidently) many times in between. Much love. 
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