Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

I Don't Know How Much More I Can Take.
0

4 posts in this topic

I see a lot of people post with such worse reactions and lots of other issues and mine are beginning to pile up. In short.. how the heck do you deal with so many things/issues?

 

Some background (totally optional read)... I started having colon spasms my freshman year of high school (2006) which were self-diagnosed at the time as period cramps. My senior year I got gastroenteritis and everything went down hill from there. The spasms got so bad I couldn't walk or function when they'd hit, I went on birth control to try to deal with a viscous D/C cycle that lined up with my periods (that worked for a bit), and the spasm attacks were getting more frequent. I went to my mom's GI and he diagnosed it as IBS, prescribed an anti-spasm medicine to get me functioning again and a slew of tests which I never finished. I had a fluoroscopy which went perfectly fine. I cut out caffeine, high sodium, high sugar and began limiting gluten to help cope.

 

Fast forward 3 years to today. I started being able to handle gluten less and less till finally, one weekend in February, I decided to try eating straight pasta again. I had two small bowls over two days and almost didn't make it to class on Tuesday because I was in so much pain and felt like my gut could expulse everything at any given moment. I went and got my blood testing done and came back positive according to my ttg IgA (90.8 AB/units). I went off gluten immediately and my world was changed. I started reading the forums and got my appointment set up with a GI at school to look at getting a biopsy. I figured out from this lovely source of celiac knowledge that I needed to start eating gluten again. The day after I started I got hit with a virus causing flu like symptoms and decided I couldn't deal with gluten and what I thought was the flu. Turns out that little virus attacked my eyes and I now, on top of being back on gluten, can't see in about 6 areas of my right eye, the biggest being just below my center of vision. It will either clear up in 3-5 months or I will just have to live with it. And that I could deal with... but I'm a college student at a rigorous university; my course load is very demanding. I'm also involved in leadership positions in extracurriculars, mainly a dance group where we have our huge semester show the week before my endoscopy. I'm in charge of publicity for that. Last semester, before I got hit with a proverbial medical issues bus, the show and my course work was enough for my body to completely shut down. And now I have glutening and vision loss. 

 

I just don't understand why all this is happening... outside of the mentioned issues I'm a perfectly healthy (my vitamin panel came back as all normal after 2.5 weeks off gluten), almost 21 year old who stays active and eats healthy 90% of the time. I don't drink, I don't party, I'm on honor roll, I swim 4.5 miles a week, I'm in a healthy supportive relationship. I'm doing everything I'm supposed to... so why is my body breaking?

I don't know how to cope with this because everything feels so out of my control. I have until the 19th of April to stay on gluten and I accidentally had a crumb of a brownie at lunch (I would have been more careful except that I'm supposed to start eating it somewhat regularly) and I was nauseous, dizzy and disoriented for a half hour afterwards and my body is reacting faster than ever. I'm just lost and looking for some help.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Perhaps you can go to your doctor and get a note so that your schools disability center may be able to help you? Accommodations and whatnot? I'm not sure what they would be able to do without an "official" dx, but seeing as your sick enough as it is, you may be able to qualify for note taking and whatnot if you have to miss your classes.

 

I would contact them to see. It might be a long shot, but the idea of having a backup plan if you can't come in helps.

 

As a fellow college student, i understand completely. I got hit with this mess in the middle of the semester about two years ago. It is hard.

 

One day at a time. That is all you can do.

0

Share this post


Link to post
Share on other sites

Can I ask what purpose having the official diagnosis will serve? Your blood tests

are positive, and gluten makes you very, very sick. What benefit will you get from

forcing yourself to suffer through continuing to eat gluten for an official diagnosis?

You didn't say how long you'd been gluten free for, but I do know that you need to

be eating gluten for a good bit longer than a few weeks for an accurate biopsy result,

which I am sure from your reading you know isn't guaranteed anyway.

 

Basically, what will having an official diagnosis help you with, and if this test were to

come back negative, would you continue eating gluten? If you would stop anyway,

knowing how much better you feel, then you need to weight the effects of glutening

yourself for the purposes of the test against the benefits of having the official diagnosis.

There are some doctors who will diagnose based on the positive bloodwork and your

response to the diet, as well. You may want to speak with your doctor about that.

 

You know, I don't think I've ever had it properly explained to me why the positive blood

doesn't qualify as a diagnosis. Maybe someone with more scientific understanding can

jump in for me? What could cause elevated anti-gluten antibodies, other than Celiac?

0

Share this post


Link to post
Share on other sites

It sounds like you may be overexerting yourself. I'm in college with a rigorous courseload, too. Very stressful. I always find that I do SO much better at home on breaks - even though I eat the same gluten-free things as in college. I've learned the amount of stress (knowingly or unknowingly) I have directly affects how I'm feeling. I kept hearing that stress affects us, but now I know it's so very true! :/ 

 

From one college student to another, here's what I'll say in regards to coping with celiac... (We all know it's not easy and being in college makes it even harder.) What's gotten me through is my faith in God. He's the one who has all control, and I control nothing. Find those people who support you, encourage you, and be patient with you and hang tight to them. Take it day by day. Take care of YOU right now the best you know how, so you can get better and live a long, healthy life. Everything else will fall into place. Find things you enjoy doing. And stay away from stress! 

 

So sorry you are not feeling well. Keep your head up and hang in there! <3

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,876
    • Total Posts
      919,429
  • Topics

  • Posts

    • Anyone experience brain fog like this?
      Brain fog is a common symptom.  I had a hamburger patty from a local restaurant and am suffering the effects.  Sometimes mine is bad and sometimes it is mild.  This one feels mild, provided I am not "glutened" again.  I have the exact same feelings when I am contaminated.  I actually had 2 good days this week to ony have to go back through this again.  The first day is just tired and want to sleep, but as each day goes on it seems like all I can do to concentrate and do anything.  TV is OK but for me just standing up or moving sometimes makes me dizzy.  Luckily I don't have the nausea but even sitting still I feel like I am in a swimming pool moving.  You know kind of like when you were a kid and you got in the pool or went roller skating but then got out and and you still felt like you in the pool or skating?  The anxiety and the depression is the worst.  I am taking things to help with it but it doesn't always help.  Only thing that seems to help sometimes is just going in to my room and laying there and not moving and just going to sleep.   It will pass.  Just be cautious about everything.  I have opted to let my family know that I will bring my OWN food when we have gatherings.  I don't mind being the odd man out because I am already the odd ball.  One thing I have learned and that is people mean well but mistakes happen and we are the ones who have to pay the price.   Hope you feel better soon.
    • gluten intolerance, dairy intolerance and fructose
      Look into The Paleo Approach by Sara Ballentyne, PhD.  Great resource and will probably answer your questions.  I have the same problem. You have to really read labels.  The only coconut milk I can use is an organic canned one.  Others have too many ingredients that are problematic.  For now, stay with meat and vegetables as someone else has recommended.  If rice works for you, great.  If not, winter squash is good.  The diet change is overwhelming at first but then it starts to make sense.  The one good thing about an intolerance versus allergy is the possibility of someday being able to add it back into your diet once your gut has healed.
    • Anyone experience brain fog like this?
      I went gluten free about a month ago, and was finally feeling *great* last week when wham -- my well-meaning Dad cooked me dinner and forgot to check the ingredients on the fish sauce he used. The upside of being glutened for the first time is that, after a couple weeks of feeling good, I feel like I can discern the symptoms a lot better now. I've noticed that the worst part, aside from the nausea, is the "brain fog," but I'm curious if my experience of brain fog is the same as or similar to what other people are feeling. For me, it becomes almost physically painful to concentrate on anything. If I try to read a book, or watch a TV show, it makes me feel dizzy, overwhelmed, and nauseous. For a couple days, I feel like all I can do is try to stay still and do as little as possible while I wait it out. It feels similar to anxiety, but not quite the same, and none of the usual tricks for getting through a panic attack help. Do any of you experience brain fog in a similar way? Where it basically makes you feel sick to try and concentrate on anything, even fun and relaxing things?
    • gluten intolerance, dairy intolerance and fructose
      I've never gone fructose free so can't help much with that.  But any fruit is probably a problem.  If you are serious about avoiding fructose you could do a search and print out a list of foods to avoid. http://www.mayoclinic.org/fructose-intolerance/expert-answers/faq-20058097 Yes, it very possible to have multiple food intolerance issues.  Many people have multiple food intolerances.  It might help to avoid any foods that are sweet for now.  Meat and most veggies are probably the way to go.  You may want to get some jerky to eat for snacks.  Peanuts might be ok but you'll need to verify that.  Boiled eggs are probably ok.  Most soda would be a no-no.      
    • Help
      Hi Courtney, You asked about dairy, and RMJ got it right.  Celiac disease destroys the villi lining of the small intestine.  Those villi make the lactase enzyme we need to digest dairy. Sigmoid colon thickening could be related to diverticulitis.  Which according to Wiki is a fairly common condition but doesn't always cause symptoms.  Diverticulitis can cause a problem if there is an infection though.  The sigmoid colon is part of the large intestine.  Celiac disease affects the small intestine, so celiac isn't likely involved.  I am not sure why the resident suggested celiac, unless there were some other reason to do so.  Possibly the weight loss, which could be explained by celiac disease.  Thickening of the colon may happen with Crohn's disease also.  And I'm not sure about UCD (ulcerative colitis disease) but it might cause that also, not sure https://en.wikipedia.org/wiki/Diverticulosis https://en.wikipedia.org/wiki/Sigmoid_colon http://biology-pages.info/G/GITract.html#pancreas http://www.ccfa.org/what-are-crohns-and-colitis/what-is-ulcerative-colitis/
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,912
    • Most Online
      1,763

    Newest Member
    Mamalarge
    Joined