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. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      11

      My only proof

    2. - knitty kitty replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    3. - trents replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    4. - Scott Adams replied to Larzipan's topic in Related Issues & Disorders
      39

      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

    5. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      11

      My only proof


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,363
    • Most Online (within 30 mins)
      7,748

    Jawgf
    Newest Member
    Jawgf
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
    • knitty kitty
      Segments of the protein Casein are the same as segments of the protein strands of gluten, the 33-mer segment.   The cow's body builds that Casein protein.  It doesn't come from wheat.   Casein can trigger the same reaction as being exposed to gluten in some people.   This is not a dairy allergy (IGE mediated response).  It is not lactose intolerance.  
    • trents
      Wheatwacked, what exactly did you intend when you stated that wheat is incorporated into the milk of cows fed wheat? Obviously, the gluten would be broken down by digestion and is too large a molecule anyway to cross the intestinal membrane and get into the bloodstream of the cow. What is it from the wheat that you are saying becomes incorporated into the milk protein?
    • Scott Adams
      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
    • knitty kitty
      Hello, @NanceK, I'm glad you're willing to give Benfotiamine with B Complex another go!  I'm certain you'll feel much better.   Yes, supplementation is a good idea even if you're healing and gluten free.  The gluten free diet can be low in B vitamins and other nutrients. A nutritionist can help guide you to a nutrient dense diet, but food sensitivities and food preferences can limit choices.  I can't consume fish and shellfish due to the sulfa hypersensitivity and iodine content, and dairy is out as well.  I react to casein, the protein in dairy, as well as the iodine in dairy.  My Dermatitis Herpetiformis is aggravated by iodine.   Blood tests for B vitamin levels are notoriously inaccurate.  You can have deficiency symptoms before blood levels change to show a deficiency.  I had subclinical vitamin deficiencies for years which affected my health, leading to a slow downward spiral.  Because the B vitamins are water soluble, they are easily excreted in urine if not needed.  It's better to have it and not need it than need it and not have it.   Wheat and other gluten containing grain products have vitamins and minerals added to them to replace those nutrients lost in processing.  Manufacturers add cheap vitamins that our bodies don't absorb or utilize well.  Even normal people can suffer from vitamin deficiencies.  The rise in obesity can be caused by High Calorie Malnutrition, where people eat more carbohydrate calories but don't get sufficient thiamine and B vitamins to turn the calories into energy.  The calories are stored as fat in an effort to ration out diminishing thiamine  stores.    It's time to buy your own vitamins in forms like Benfotiamine that our bodies can use well.   Not sleeping well and fatigue are symptoms of Thiamine deficiency.   I'm certain Benfotiamine with a B Complex will help you immensely.  Just don't take them at night since B vitamins provide lots of energy, you can become too energetic to sleep.  Better to take them earlier in your day.   Do keep me posted on your progress!
×
×
  • 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.