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:
    Join eNewsletter
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Accuracy of testing concerns

    2. - Theresa2407 replied to chrish42's topic in Doctors
      4

      Doctors and Celiac.com

    3. - Scott Adams replied to suek54's topic in Dermatitis Herpetiformis
      4

      Awaiting dermatitis herpetiformis confirmation following biopsy

    4. - Scott Adams replied to xxnonamexx's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Healthy Gluten Free Foods low sugar that you found?

    5. - trents replied to suek54's topic in Dermatitis Herpetiformis
      4

      Awaiting dermatitis herpetiformis confirmation following biopsy

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,253
    • Most Online (within 30 mins)
      7,748

    catnapt
    Newest Member
    catnapt
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
    • Theresa2407
      Our support groups in Iowa have tried for years to educate doctors and resource sites like this one.  We have held yearly conferences with continued education classes.   We have brought in Dr. Murray, Dr. Fasano, Dr. Green and Dr. elliott.  In those many years we may have had 2 doctors attend.  We sent them information, with no response.  I talked to my personal doctor and she said their training for Celiac was to show them a skinny man in boxer shorts and a huge stomach.  Saying if you see this, it is Celiac.  If it isn't in their playbook then they don't care.  Most call it an allergy with no mention of our immune system.  There is so much false information on the internet.  Then people don't understand why they can't get well and are acquiring more immune diseases. I mention this site to everyone.  Scott has working hard for the Celiac community.
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      One of our sponsors here is a nut/seed/dried fruit, etc., company that sells gluten-free versions. Tierra Farm: https://www.tierrafarm.com/discount/gfships
    • trents
      You might also consider a low iodine diet as iodine is know to exacerbate dermatitis herpetiformis. But be careful with that as well as there are health problems that can accrue from iodine deficiency.
×
×
  • 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.