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

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

EmiPark210

By EmiPark210
in Coping with Celiac Disease

Recommended Posts

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.

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

Celiac.com Sponsor (A8-M):


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

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,664
    • Most Online (within 30 mins)
      7,748
    Lkscot0uky
    Newest Member
    Lkscot0uky
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Thank you for the advice. I’ve actually never checked for nutritional deficiencies, but for as long as I can remember, I’ve always taken vitamin and mineral supplements — otherwise my symptoms get worse. This week I stopped eating gluten to confirm whether my symptoms are really caused by it. Starting next week, I’ll reintroduce gluten — it’s sad to go back to how I was before — but at least I’ll be able to take the necessary tests properly. I think the diagnostic process will be long, but at least I’m happy that I finally decided to address this doubt I’ve had for years.
×
×
  • 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.