Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

When Will I Be Able To Cope With This?


CJoy

Recommended Posts

CJoy Newbie

It has been five months now that I have been gluten free. I was diagnosed two weeks before leaving home to go back for my second year of college. I feel good on some days but on other days I find myself depressed/angry about my diagnosis (the whole college environment does not help at all!). I keep telling myself to get a hold of my feelings and move on but I'm afraid I can't- at least not yet. How long did it take for everyone else to come to grips with their diagnosis? Is there anything I'm missing or is it normal to still be feeling this way five months after being diagnosed?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Takala Enthusiast

Yeah, college students are not exactly noted for their empathy at times. <_<

Most people get happier as adults anyway.

Look at the bright side, you are, by getting officially diagnosed now, instead of going thru years or decades of increasingly whacked out symptoms that doctors will try to suggest is IAIYH, IBS, FIBRO, FIBRO BRAIN FOG, STRESS, ANXIETY, PREMATURE PERIMENOPAUSE, OSTEOPOROSIS, LIVERGALLSTONES, MS, IDIOPATHIC (insert disease), and try to mask with mood enhancers, getting a chance at a healthy life.

And this will really show up by the time you are 40 or 50 and stuck on this healthier diet. Other people will not get diagnosed or have other things go wrong with their seemingly perfect younger lives, and you see them years later, and you think, "wow. what ever happened to them. they look horrible." And then you find out in addition to aging less well, they had many other things go wrong. Or their kids were not at all like what was portrayed in the Holiday Letter. :P

ravenwoodglass Mentor

It can take a while to come to terms with having celiac and it is tough when your a college student. One thing for me that may or may not pertain to you is that I get bouts of depression when I get glutened. Could you have gluten sneaking in? A food and mood diary might be helpful in pinpointing if there is something that links the episodes. Sometimes it is helpful to also see a counselor to help get through the grieving process.

tictax707 Apprentice

Cjoy,

It's ok that you are feeling like this now. Don't beat yourself up about not being ok with it at the moment. In the grand scheme of things 5 months is not really all that long. You've got plenty of time to go through whatever you need to go through. It's really kind of like going through stages of grief. I think it's more important to be honest with your feelings at the moment which will actually enable you to really be able to accept & "move on" as you say.

I actually thing that "coming to grips" may not really a finalized thing, but an emotion or reaction that is constantly evolving. But I don't mean that in a way to say "you'll never get over this" I mean more to say that the acceptance will come along sometimes in spurts, and sometimes you might still feel bad, mad, frustrated. But ultimately I think that's ok, and its not realistic to be perfectly happy with anything 100% of the time, you know?

In addition, as public awareness keeps evolving & technology and food options keep evolving, the way you feel about things may keep evolving. When I was first diagnosed the store bought bread options that were available to me were pretty horrific. As were the cake mixes. (oh, how I will never forget my first post-diagnosis birthday cake. Thank god we can laugh about it now). But now with so many options in stores and increased awareness in restaurants has made me feel less isolated than when I first started. There will still be adjustments for you in that regard, but as time passes, things will likely seem much less dismal. :) Hang in there, and definitely use this arena for support. I wish you the best!!! :D

SaraKat Contributor

I was diagnosed in August 2010 and I am 35. I get down about the diagnosis when I am not feeling well (like now). I have had 3 bouts of not feeling well since the diagnosis. It is hard, but I try not to get too down. I try to exercise a lot, usually I can do that even when I am not feeling well. My main symptom is pain in my left side and when it is there that is all I can think about.

When I feel good, I don't even think about celiac. I guess just try to stay gluten-free as much as possible and hopefully you will start to feel better.

At least you got diagnosed so you know what is wrong. It took me about a year to get a diagnosis which I thought was long, but then I read some other people's stories and I feel lucky.

Good Luck!

sb2178 Enthusiast

I agree that you can't ever entirely just "get over it" because you always have to think about it in order to function in daily life. It's like being blind, or deaf, or something where it affects your life. You can, however, negotiate peace most of the time. it helps once your friends are used to it, and automatically stock a hard cider in the fridge or bring chocolate instead of cookies. I stabilized at about 6 to 7 months, in sort of knowing what I could eat and being happy enough about it.

Coincidentally, that was the point at which I also started to feel considerably more stable in terms of weight and seemed to stop randomly reacting to very small trace amounts from things like not washing my hands. I had also cut out dairy, which was hard, but helped a bit with total symptom resolution.

Gotta tell you, still have days where co-workers at lunch start talking about pizza tasting and boy, i want to whine. I don't, but oh, I'd like to. Fortunately, I know of one place that has pizza I really like for eating out and a bakery where I can buy frozen pizzas that I like. This is an excellent place to come whine when you need to, though.

Mama Melissa Enthusiast

Hey im about 4 1/2 months gluten free and while i gradually started to feel better the depression was one of the major symptoms before i got diagnosed as well.I totally understand how knowing what you have can make you feel so different like no one understands,it wasn't until i realised i needed help ,a boost so to call it. My gi doc had given me a prescription for Elavil 10 ml when i first got diagnosed i had stomach problems as well.I decided i need to give it a go mainly because it also helps with depression as well and WOW what a difference i feel 100% now it took a good 2 weeks to kick in but life is soo worth living and the diet is now a breeze no biggie atall:)I was help bent on not taking any pills and i dont plan on doing it forever just a couple months until the diet sinks in a little more!But boy am i happy i did.I wish you luck and keep your chin up you will only get BETTER from here on out xoxo ~Melissa~


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



MelindaLee Contributor

I went gluten-free in August 2010. I was pretty positive about the whole idea since I tend to be a "when life gives you lemons, you make lemonade" kind of person. But, even with this, and SUPERB support from my friends and family, I still get frustrated and depressed about being gluten-free at times. I remember college well...I can imagine it hits you in the face a bit more since you my not have as much control over your food if you live in community housing. Keep your chin up..this too shall pass. :rolleyes:

RedShark92 Newbie

Well... I'm just over a week diagnosed and alternating between feeling OK about this and on top of it and feeling totally overwhelmed with the whole thing. Really happy to hear I may have 7 more months of roller coaster!

SarahAnn7272 Newbie

It has been five months now that I have been gluten free. I was diagnosed two weeks before leaving home to go back for my second year of college. I feel good on some days but on other days I find myself depressed/angry about my diagnosis (the whole college environment does not help at all!). I keep telling myself to get a hold of my feelings and move on but I'm afraid I can't- at least not yet. How long did it take for everyone else to come to grips with their diagnosis? Is there anything I'm missing or is it normal to still be feeling this way five months after being diagnosed?

I am completely new to this and I am 22, probably around the same age. It is already becoming challenging and I completely understand where you are coming from. Its so frustrating when my friends want to go out to dinner, or going to the bars. They dont seem to understand that this is serious and I cant just "have a beer" or "just skip the diet for a meal". I am hoping I will adjust soon and I am glad to see I am not alone in this. It's becoming a fad in my town to cut out gluten but most people are doing it just because of the trend, not because it makes them sick like me. This message board is really the only communication I have, and I was hoping to hear from others my age.

CathyG Rookie

I was only diagnosed a couple of weeks ago and I have to say that I feel much better now that I know what's wrong with me.

I have 2 small children, one is 1yr and the other is 3yrs and I would do anything to make sure that I'm around to be their Mum. Giving up gluten is alot easier for me than coping with an illness when I have little ones to look after. :)

I see where you're coming from and can understand that being in college would definitely be a challenge. Just keep telling yourself that at least you found out now and that you'll be healthy and able to avoid scary life threatening diseases later in life if you look after yourself. As they say "knowledge is power" and it's better to know what's going on especially with a disease like this that can be managed.

You'll probably find that once you finish college you'll feel alot better about your diet and lifestyle - I'm in a different stage of life to you and I find that it's not that difficult to maintain this lifestyle, it just takes a few changes which aren't that hard for me. You'll probably find the same thing :)

sahm-i-am Apprentice

I am sorry you are having a hard time lately. I've been diagnosed for 9 months now and just this past weekend I had a mini-pity party 'melt-down' hissy fit about being Celiac. I was in full blown toddler tantrum mode. I have the best supportive family and my friends are great about it. I haven't been glutened and actually don't even react to gluten (except the damage inside). I was just mad and thought it unfair. A few hours later I was over it. Sure, I cried. My husband was totally sympathetic and knows how bad this disease sucks. But it just feels good to get it out. It also helps to have someone else validate your feelings.

You will have better days. You just have to find your new normal.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,959
    • Most Online (within 30 mins)
      7,748

    jenny44
    Newest Member
    jenny44
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.