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Gluten Free, Still Not Feeling So Good

amberlink09

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amberlink09 Apprentice
amberlink09
Posted

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?

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lovegrov Collaborator
lovegrov
Posted

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
BRUMI1968
Posted

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
amberlink09
Posted
  • Author

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
GottaSki
Posted

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
BRUMI1968
Posted
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
wildwood
Posted

Have you been checked for mono?

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  • 2 weeks later...
Fields Newbie
Fields
Posted
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
Fields
Posted

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
ksymonds84
Posted

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!

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    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
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