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

EmiPark210

By EmiPark210
in Coping with Celiac Disease

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EmiPark210 Contributor
EmiPark210
Posted

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.

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shadowicewolf Proficient
shadowicewolf
Posted

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.

JNBunnie1 Community Regular
JNBunnie1
Posted

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?

New Community Member Explorer
New Community Member
Posted

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

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