Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Help....


AlexandraN

Recommended Posts

AlexandraN Newbie

Hi everyone!

I've been gluten free for roughly a year and a half. In middle school, I had periodic, extremely painful, stomachaches. During my sophomore year of high school, I suffered from daily severe migraines. My best friend, who is also gluten-free, suggested I try going gluten free. Within 2 weeks, my headaches were gone. Now when I eat gluten, I get a stomach ache+GI stuff/sinus clogging/headache that lasts 2-3 days.

Miracles, right?

I also went off of most dairy. I can tolerate high fat stuff like butter and heavy cream. I'm also allergic to soy (traditional allergic reaction to tofu, soy flour, soy protein, etc), which has been diagnosed. My allergist at the local children's specialty hospital does not believe I am truly celiac, because I don't present traditional symptoms. She ran a blood test on me, but I had not been eating gluten intentionally for a year and a half by that point, so I wasn't surprised at all when the test turned up negative.

I have not been diagnosed with celiac/gluten intolerance. I'm seeking the best and most efficient way to get a diagnosis of some kind. As I'm going off to college next year, it'll be easier to confront their dining services with a concrete diagnosis (or if that fails, doctor's notes or something) so that I can have a reasonable chance of eating next year. What would you guys recommend? Should I get tested for other allergies? (the same allergist refused to do a food prick test).

Thanks!


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



Celiac.com Sponsor (A8-M):



lemontree1 Rookie

2 things come to mind that you can test for. One would be the prick test and the other would be a blood allergy test.

Maybe you can find anther doctor that will diagnose you just by your symptoms? Even a diagnosis of gluten intolerance should help.

lemontree1 Rookie

To add-- You can have an allergy to wheat and not be celiac, and you can be celiac and not have an allergy to wheat. You could also be gluten intolerant and neither celiac nor an allergy to wheat, and it would not show up on a blood test.

So-- even if you did the allergy tests, they could still be negative, even though you have a problem with wheat.

When all is said and done, even if all tests are negative, YOU know you have a problem with it. Though a diagnosis may make your life easier in some respects, it is always up to you to be true to yourself and take care of yourself.

  • 4 weeks later...
gfpirate Rookie

The symptoms of Celiac have a such a far range... it's not always stomach or intestinal issues. Headaches (migraines), neuropathy, muscle/joint weakness, etc, etc; are all symptoms.

The only downside of getting a diagnosis is that you have to go back to gluten for a few weeks. I would talk to a doctor about this first, of course.

It sounds like you very well could have a gluten problem... it's amazing what a wide range of symptoms it can cause!

Lisa Mentor

Hi and Welcome!

I'm not a teen, but I will share my thoughts. ;)

A positive dietary response can be diagnostic as well as other tests. Can you discuss this with your doctor, who should be well informed of your recovery while on the diet. Other than that, there is no other means to diagnose without returning to a full gluten diet, and that doesn't seem like a healthy option.

As you may know, the Students with Disability Act, will help ensure that your college can meet your dietary needs.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,235
    • Most Online (within 30 mins)
      7,748

    judycs
    Newest Member
    judycs
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      How long have you been strictly gluten free? Certainly, it would be good to look into vitamin and mineral deficiencies and supplementation. The B vitamins, magnesium and D3 are all very important to neurological health. Unfortunately, it can be difficult to reverse gluten-induced neurological damage damage if it has gone on for a long time. 
    • nataliallano
      Thanks Trents I'm strict with my gluten-free diet now. I just don't feel any better. I'm going to get tested for vitamins and minerals to see if I need some supplements. For sure I got some damage that doctors call Menier's and the only way they treat it is with medicine that does damage my body more than it helps.   
    • Zuma888
      Thank you Scott for your helpful response! Based on this, would you say someone who is on a gluten-free diet - but not strict about cross-contamination and occasional cheating - and tests negative for tTg-IgA while having normal total IgA is not likely to have celiac, even if they have been 'gluten-free' for years?
    • Scott Adams
      That’s a really insightful observation about antibody testing and the gluten challenge! You’re absolutely right that antibody levels can remain elevated for months or even years after going gluten-free, especially if there’s ongoing cross-contamination or occasional slip-ups. The immune system doesn’t reset overnight—it can take time for antibodies like tTG-IgA to normalize, which is why many doctors recommend waiting at least 6–12 months of strict gluten-free eating before retesting. For someone who’s been gluten-free for less than two years or hasn’t been meticulous about avoiding cross-contact, there’s absolutely a chance they’d still test positive, since even small amounts of gluten can keep antibodies elevated. This is partly why the gluten challenge (where you eat gluten before testing) exists—it’s designed to provoke a measurable immune response in people who’ve been gluten-free long enough for antibodies to drop. But you raise a great point: the challenge isn’t perfect, and false negatives can happen if the timing or amount of gluten isn’t sufficient to trigger a strong antibody response. This is why diagnosis often combines antibody tests with other tools like genetic testing or endoscopy. Your question highlights just how nuanced celiac testing can be! For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:      
    • Betsy Crum
      Thank you for your response! I have considered starting a food diary in the past, I suppose this is as good a time as any to start.  
×
×
  • Create New...