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

Gluten Free, Still Not Feeling So Good


amberlink09

Recommended Posts

amberlink09 Apprentice

Hey guys, my name is Amber and I was diagnosed about 3 months ago, just a day before starting college. I had been sick for about 6 years undiagnosed before. The diet has been an adjustment, I have no place to cook so I know I'm not getting all the nutrients I need but I still think I should be feeling better. My stomach is improving, at least in weeks when I'm not sick from cross contamination, but nothing else is. My test results showed that I'm anemic and I have some vitamin deficiencies, so I've been on iron pills and multivitamins. I have started getting strange 24 hour flus on an almost weekly basis now, and the doctors always tell me I have some kind of "virus," they then send me home without any kind of medicine. These little flus come along with fevers sometimes up to 103 degrees, usually some congestion, dizzyness, and lots of aches. The fever usually goes down after a day and I'm feeling a lot better, then a week later the same thing happens again, but is sometimes marked with throwing up, an extremely sore throat, or a horrible cough. I'm really at a loss for what to do. I'm in college and I don't have time to be sick and tired all the time. Has anyone else had anything like this? Does it sound like I could possibly have one of the other diseases associated with Celiac?


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



Celiac.com Sponsor (A8-M):



lovegrov Collaborator

Being in college I would guess that for one thing, you're getting regular CC and are not healing completely. As for the "mini-flus," when I got really sick I had a constant "flu" with temps up to 105, aches, sweats, chills and so on. I wasn't throwing up. Could it be something other than celiac? Yes, it can, but I wouldn't pretend to know what.

If things don't improve, you might need to consider postponing college next semester to give yourself time to find out what's going on and to heal. I would assume the college would re-admit you.

richard

BRUMI1968 Collaborator

I wish I could help more. I would say that as a college student, you doubtlessly have a "free" medical clinic (paid for in your tuition - at least that's how it was when I was a student a year or two ago). You should go in and get a blood workup. You would be surprised how many deficiencies can cause problems that might present like the flu. I would also get your thyroid checked (and ask for FREE T3 and FREE T4 - they are the ones that give the best info). It's entirely possible your hormones are out of wack. You can check out stopthethyroidmadness to see if you have any other symptoms. I'd also check to make sure you don't have a parasite or small bowel bacterial infection or something. Have them check your B12, Ferritin levels, and if your B12 comes back even borderline, ask for an MMA test.

You are not well, and having the doctors disconnect the repeated illnesses you are having as isolated is not good medicine. I know it's hard to assert yourelf at the doctor's office, but make sure you tell them it is affecting your grades, that you are unable to excel in school as you are sick a lot, etc. If for some reason your school does not have a medical center where you can get free healthcare, I hope you have some other access. I know it's been a bear for me to afford the doc since I quit school.

Take care!

p.s. keeping a food diary might help as well. it is possible the tummy parts of the illness are from CC. Do you live on campus? can you use a camp stove and your own pan to make food? that is what I do when I travel - a camp stove, my own pan, my own toaster, my own blender, my own cutting board. A pain, but I hardly ever get had.

amberlink09 Apprentice

Hi! Thank you so much for all of the information, I'll definitely check my symptoms and see if our clinic will run some blood tests for me. I do live on campus, but our dorms don't allow any appliances unfortunately, I can't even get a toaster!

GottaSki Mentor

Welcome Amber!

I second both keeping a food diary AND get blood work for vitamin/minerals. You are likely deficient in many. I don't know if this is a complete list, just what my Celiac GI tested for during my diagnosis. Vitamin B12, D, K, Iron, Ferritin, Zinc and Copper -- all of mine have been improving steadily over the past nine months.

One other very simple suggestion that I often didn't do when I was consistently having flu symptoms over the years -- KEEP your water intake above the recommended level of 8 glasses per day -- it can help and doesn't hurt.

Good Luck!

BRUMI1968 Collaborator
Hi! Thank you so much for all of the information, I'll definitely check my symptoms and see if our clinic will run some blood tests for me. I do live on campus, but our dorms don't allow any appliances unfortunately, I can't even get a toaster!

Actually, Celiac is covered under the Americans With Disabilities Act, and I imagine you could fenagle yourself some appliances of some kind. Just a thought Good luck to you!

wildwood Apprentice

Have you been checked for mono?


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



Celiac.com Sponsor (A8-M):



  • 2 weeks later...
Fields Newbie
Hey guys, my name is Amber and I was diagnosed about 3 months ago, just a day before starting college. I had been sick for about 6 years undiagnosed before. The diet has been an adjustment, I have no place to cook so I know I'm not getting all the nutrients I need but I still think I should be feeling better. My stomach is improving, at least in weeks when I'm not sick from cross contamination, but nothing else is. My test results showed that I'm anemic and I have some vitamin deficiencies, so I've been on iron pills and multivitamins. I have started getting strange 24 hour flus on an almost weekly basis now, and the doctors always tell me I have some kind of "virus," they then send me home without any kind of medicine. These little flus come along with fevers sometimes up to 103 degrees, usually some congestion, dizzyness, and lots of aches. The fever usually goes down after a day and I'm feeling a lot better, then a week later the same thing happens again, but is sometimes marked with throwing up, an extremely sore throat, or a horrible cough. I'm really at a loss for what to do. I'm in college and I don't have time to be sick and tired all the time. Has anyone else had anything like this? Does it sound like I could possibly have one of the other diseases associated with Celiac?
Fields Newbie

Amber, make sure that your vitamins are gluten free. My nutritionists said I needed vitamins so I got them from GNC. After another fainting spell, I learned that GNC is not regulated by the FDA. Vitamins need to be prescribed by a physician. Get to know your pharmacist so they can help identify any medicines that contain gluten. Good luck.

ksymonds84 Enthusiast

I agree with Bully 4 You, with a Celiac diagnoses you should be able to get appliances for your room. My daughter is working in the food hall and says she feels so sorry for those with celiac because even though they have gluten free options, the cross contamination is ridiculous!

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    2. - trents replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    3. - Theresa2407 replied to Theresa2407's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Probiotics

    4. - KathyR37 replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here

    5. - Scott Adams replied to KathyR37's topic in Coping with Celiac Disease
      4

      New here


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,816
    • Most Online (within 30 mins)
      7,748

    KTH
    Newest Member
    KTH
    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

    • cristiana
      Hi @KathyR37 and a very warm welcome here.  I am so very sorry that you are going through all of this. I just wanted to check, have you ever been tested for any other gastrointestinal conditions? Cristiana  
    • trents
      @KathyR37, I would suspect that in addition to gluten intolerance, you have other food intolerances/sensitivities. This is very common in the celiac community. The most common offenders are oats, dairy, soy, corn and eggs with dairy and oats being the big two. Have you considered this? Have you tried keeping a food diary to detect patterns?
    • Theresa2407
      thank you for your advice.   I have always taken them and I use Stonehedge because they are in a glass bottle, but don't have to be refrigerated.  I also like they are 3rd party tested and state gluten free. But you never know if something better has come alone over the years.
    • KathyR37
      Thank you for your response. I have already learned about the info you sent but i appreciate your effort. I am the only one in my family cursed by this disease. I have to cook for them too. I make sure that my utensils are free of gluten and clean after using them for other food. I use non-porous pots and pans and  gloves when cooking for them. One huge problem I have is a gag reflex out of this world and if something doesn't taste good it is not going down. Most commercially made breads and such taste like old cardboard.Pastas are about the same. I did find one flour that I like and use it regularly, but it is so expensive! All gluten free food is way more expensive. I only eat twice a day because I cannot afford to buy all that. We live on a very low income so my food purchases are quite limited.
    • Scott Adams
      What you've described—the severe weight loss, the cycle of medications making things worse, and the profound fear of eating before leaving the house—is a heavy burden to carry for 15 years. It is absolutely not your fault. While everyone's journey with celiac is different, the struggles with the learning curve, social isolation, and dietary grief are feelings many in the community know all too well. Your question about whether you should just eat what you want and manage the symptoms is a heartbreaking one, born from years of frustration. It's crucial to know that the diarrhea is a sign of ongoing damage to your small intestine from gluten, and simply managing the symptom with Imodium doesn't stop that internal harm or the risk of other complications. The fact that you are still getting sick within an hour of eating, even while trying to be gluten-free, is a huge red flag that something isn't right. This could be due to cross-contamination in your kitchen (e.g., using a shared toaster, colander, or condiment jars), hidden gluten in foods, or the possibility of another concurrent condition like refractory celiac disease. Don't give up!  This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
×
×
  • 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.