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. - Aretaeus Cappadocia replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Finding gluten free ingredients

    2. - Aretaeus Cappadocia replied to lmemsm's topic in Gluten-Free Foods, Products, Shopping & Medications
      13

      Finding gluten free ingredients

    3. - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      11

      Severe severe mouth pain

    4. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      11

      Severe severe mouth pain

    5. - trents replied to Charlie1946's topic in Related Issues & Disorders
      11

      Severe severe mouth pain

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

    • Total Members
      132,902
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Aretaeus Cappadocia
      I shop a fair bit with Azure Standard. I bought Teff flour there and like it. they have a lot of items on your list but probably no soy flour, at least not by that name. https://www.azurestandard.com/shop/product/food/flour/teff/brown/teff-flour-brown-unifine-gluten-free/11211?package=FL294 As mentioned in another answer, Palouse is a high quality brand for dry beans, peas and other stuff. I buy some foods on your list from Rani. I've been happy with their products. https://ranibrand.com/ Azure and Rani often use terms that skirt around explicit "gluten free". I've contacted both of them and gained some comfort but it's always hard to be certain. FWIW, my IgA antibody levels are very low now, (after including their foods in my diet) so it appears I am being successful at avoiding gluten. 
    • Aretaeus Cappadocia
      fwiw, I add nutritional yeast to some of my recipes. since going gluten free I eat almost no processed foods but I imagine you could sprinkle yeast on top.
    • knitty kitty
      @Charlie1946, There are many vitamin deficiencies associated with PCOS and Celiac disease and mental health issues.  The malabsorption of nutrients caused by Celiac can exacerbate PCOS and mental health issues. Vitamin B 3 Niacin (the kind that causes flushing) improves sebaceous hyperplasia and PCOS. (300 mg/day) Vitamin B 1 Thiamine improves dysphagia, and with Omega Threes, Sjogren's, and PCOS.     (300 mg/day) The other B vitamins are needed as well because they all work together like an orchestra.   The fat soluble vitamins A, D, E, and K, are needed as well.  Low Vitamin D is common in both PCOS and Celiac and depression.   Deficiencies in Niacin Thiamine, Cobalamine B12, Folate B 9, Vitamin C, and Vitamin D can cause mental health issues.   I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants.  My mental health issues didn't get better until my vitamin deficiencies were corrected and a gluten free keto/paleo diet adopted.   Though blood tests are not really accurate, you may want to get tested for deficiencies before supplementing, otherwise you'll be measuring the vitamins you've taken and blood tests will show blood levels that are too high. Yes, Thiamine TTFD and the other vitamins are available over-the-counter.  A B Complex with additional Thiamine TTFD and Niacin made a big difference to my health.  I follow a paleo diet, and make sure I get Omega Threes.  I took high dose Vitamin D to correct my deficiency there.   I've run through the mental health gamut if you would like to talk about your issues.  You can personal message us if you would be more comfortable.   Interesting Reading: Nutritional and herbal interventions for polycystic ovary syndrome (PCOS): a comprehensive review of dietary approaches, macronutrient impact, and herbal medicine in management https://pmc.ncbi.nlm.nih.gov/articles/PMC12049039/
    • cristiana
      Hi @Charlie1946 I am so sorry to hear you are suffering with this problem.   Just a few other thoughts.  I had debilitating anxiety prior to my diagnosis.  I was never admitted to a hospital but thankfully had a lot of support from friends and family, and found a couple of publications contained really helpful advice:  for depression, The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi, and for debilitating anxiety, At Last A Life by Paul David.  Both can be ordered online, there is also a website for the latter.  If you are deficient in or have low iron or B12 this can cause or worsen mental health issues.  I am sure my own issues were caused by long-term deficiencies.   If you can get your blood tested, it would be useful.  In the case of iron, make sure you only supplement if you have a deficiency, and levels can be monitored, as too much iron can be dangerous. If you have burning mouth issues, very bad TMJ or neuralgia,  I understand the pain can be managed by the use of a certain class of medication like amitriptyline, which is also used to treat depression.  But there again, it is possible with the correct diet and supplementation these issues might improve? I do hope that you find relief soon. Cristiana
    • trents
      @Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs. Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations for being celiac safe. Most celiacs find that they need to depend on family members to advocate for them diligently or bring in food from the outside. Training of staff is inconsistent and there is the issue of turnover and also cross contamination.
×
×
  • 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.