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
      104,332
    • Total Posts
      920,431
  • Topics

  • Posts

    • I would like to ask if anyone has eaten puffed rice from Arrowhead Mills.  My daughter, who has celiac, wants to eat it and I am looking for advice.  The only ingredient is rice, but they do not test the product so do not label it gluten free.  I called the company and they say they clean all their equipment between each product, but since they don't test it cannot label it as gluten free.  Would you allow your daughter to eat this product?
    • He might have celiac disease (or just the start of it).  He might have Non-celiac Gluten Intolerance, which is real, but there is not a test for it.  He might have other food intolerances (milk, dyes, etc.).  You have been to an allergist and he did not positive for allergies (I assume wheat was included in the panel.).  Trialing a diet is fine, even a gluten free diet, when you ruled out everything.  But you have that quirky TTG result.  I gave you the link from the MayoClinic (top notch) and their algorithm recommends further evaluation.  An allergist is not a celiac expert nor is primary care doctor.  You should get a referral to a Ped GI.  If she/he suggests a gluten-free diet, then fine.  Because if he improves then, the GI will give you a diagnosis.  By the time you see the GI, he might have ordered another round of celiac blood tests, genetic tests, or he might want to order an endoscopy.  This case is not clear and that is a bummer.   The cure is the diet.  But he will be going to school and a diagnosis will pave the way for accommodations all the way to college.  And anyone here will tell you that once you get off gluten (and that is the root cause), it is awful....horrific... to go back on it for further testing.   This is his life and yours.  You must do what is best for your family.  I wish you well and we are here to support you.  I care.  I am mom.  
    • This just published: Highlights   • Kernel-based gluten contamination in oats skews gluten analysis results. • Grinding inadequately disperses gluten to allow a single accurate analysis. • Lognormal distribution of the test results renders a single test unrepresentative.   Abstract Oats are easily contaminated with gluten-rich kernels of wheat, rye and barley. These contaminants are like gluten ‘pills’, shown here to skew gluten analysis results. Using R-Biopharm R5 ELISA, we quantified gluten in gluten-free oatmeal servings from an in-market survey. For samples with a 5–20 ppm reading on a first test, replicate analyses provided results ranging <5 ppm to >160 ppm. This suggests sample grinding may inadequately disperse gluten to allow a single accurate gluten assessment. To ascertain this, and characterize the distribution of 0.25-g gluten test results for kernel contaminated oats, twelve 50 g samples of pure oats, each spiked with a wheat kernel, showed that 0.25 g test results followed log-normal-like distributions. With this, we estimate probabilities of mis-assessment for a ‘single measure/sample’ relative to the <20 ppm regulatory threshold, and derive an equation relating the probability of mis-assessment to sample average gluten content.   The full article can be accessed at Gluten Free Watchdog if are a subscriber.
    • If I may say something right now, the suggestions, advice, and information provided to you in this forum is just that: suggestions, advice, and information.  What has been provided can be used as tools to help figure out what is going on.  Please don't go away disgruntled or too frustrated.  There have been times myself when advice and suggestions was given to me, and I was not sure what to do about all the information.  I had to think and pray on it before I could act on it because my brain was functioning enough to do something about it right away.  It was on survival mode.  Forgive me if I am wrong, but I believe this is where you are at right now.  You are not sure where to go or what to do, so your body is just doing what it can to function day in, day out.  If this assumption is correct, I GET IT!  It is not fun, neither is it easy. Don't give up.  Things will get better.  Take all of this information and go to your primary doctor to see if you both can put your heads together and figure this out.  The answer may not come right away, but be patient.  it could be everything coming at you at once that making your body go into hypersentive mode.  I don't know, because I am not in your situation.  Until you go to the doctor, do what you know to do and God will take care of the rest.  There is something that has kept me sane through this past year: It will be okay because God is in control.  He knows what is happening to you and your future is going to be.  When you have a good day, enjoy those moments.  When you have a bad day, bring back to memory those good days and see if you can do something for another person.  I have found this year that if I focus on someone else through the bad times especially things don't seem as grim. I will be praying for you.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,387
    • Most Online
      1,763

    Newest Member
    Jaimesmile
    Joined