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

Suppressed Immune System With Celiac?


RebeccaLynn

Recommended Posts

RebeccaLynn Rookie

Hi I am new to this forum and am excited to meet you! I found out about my gluten intolerance last Oct 2010 and though I haven't had as many all-night gastrointestinal episodes since then, I still dont have any energy and I am fatigued ALL THE TIME. I am also sick with a cold or the flu every 2-6 weeks like clockwork. My glands in my throat are sore & swollen often & I feel run down like I am getting sick with a cold/flu at least once a week.

My Naturopath says I also have Epstein Barr Virus. Has anyone else had similar immune issues with gluten intolerance? Is this related to possible Celiac, or is my suppressed immune system from something else going on? Spleen? Adrenals?

I dont eat gluten (obviously), dairy, red meat, pork, or anything processed, and can't figure out how my diet can get any healthier, and why I still don't feel good. I am taking sublingual B12, Floradix Iron, and a Zinc supplement as well as digestive enzymes. I have done an elimination diet, but didnt notice a difference as I had hoped.

Please help?!


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



Celiac.com Sponsor (A8-M):



bisja Apprentice

Hi I am new to this forum and am excited to meet you! I found out about my gluten intolerance last Oct 2010 and though I haven't had as many all-night gastrointestinal episodes since then, I still dont have any energy and I am fatigued ALL THE TIME. I am also sick with a cold or the flu every 2-6 weeks like clockwork. My glands in my throat are sore & swollen often & I feel run down like I am getting sick with a cold/flu at least once a week.

My Naturopath says I also have Epstein Barr Virus. Has anyone else had similar immune issues with gluten intolerance? Is this related to possible Celiac, or is my suppressed immune system from something else going on? Spleen? Adrenals?

I dont eat gluten (obviously), dairy, red meat, pork, or anything processed, and can't figure out how my diet can get any healthier, and why I still don't feel good. I am taking sublingual B12, Floradix Iron, and a Zinc supplement as well as digestive enzymes. I have done an elimination diet, but didnt notice a difference as I had hoped.

Please help?!

Hi I had mono caused by Epstein barr a little over 4 years ago, along with Lyme Disease, after many months of treatment the Lyme is in remision, the mono took over a year to be negative but I still deal with the virus like you I get sick alot, I hate it, but it is something that the heart dcotor told me that can happen as eebv messes with your immune system, the problem with gluten came along right in the middle of dealing with these other things but honestly think through out my life I did have problems with it. Being gluten-free has helped with stomach issues but am stopping dairy to see if it helps even more which so far I do notice a difference, from what the doctor told me it can taake take 5 years or more for the body to get back to normal with epstein barr and some never do, but I think doing everything as healthy as you can is the best thing you can do. I wish I had more answers but mainly wanted you to know you are not alone.

Gemini Experienced

Hi I am new to this forum and am excited to meet you! I found out about my gluten intolerance last Oct 2010 and though I haven't had as many all-night gastrointestinal episodes since then, I still dont have any energy and I am fatigued ALL THE TIME. I am also sick with a cold or the flu every 2-6 weeks like clockwork. My glands in my throat are sore & swollen often & I feel run down like I am getting sick with a cold/flu at least once a week.

My Naturopath says I also have Epstein Barr Virus. Has anyone else had similar immune issues with gluten intolerance? Is this related to possible Celiac, or is my suppressed immune system from something else going on? Spleen? Adrenals?

I dont eat gluten (obviously), dairy, red meat, pork, or anything processed, and can't figure out how my diet can get any healthier, and why I still don't feel good. I am taking sublingual B12, Floradix Iron, and a Zinc supplement as well as digestive enzymes. I have done an elimination diet, but didnt notice a difference as I had hoped.

Please help?!

Welcome!

Celiac Disease does not result in a suppressed immune system, rather, we have overactive immune systems. The goal is to calm it down by going strictly gluten-free. However, you can become very run down from resultant anemia and other vitamin deficiencies, along with viruses which can be very difficult to overcome. I was always sick before diagnosis but after a few years of being gluten-free, I never get sick with anything anymore. It can be accomplished but it will take some time.

One thing about your diet which I would consider changing is eating red meat. There is such a thing as eating therapeutic amounts of meat to help with anemia issues. The type of iron, hemi iron, which helps to overcome anemia, is only found in red meat. I am not advocating eating lots of red meat but once a week is a good start to help with low energy levels. I don't know if you suffer from anemia but it sounds like you do and including red meat in your diet is a good way to combat that. Iron supplements are OK but red meat is better for that. I never ate much red meat until I couldn't shake my anemia issues. It helped that tremendously.

Sounds like the virus is the culprit for your on-going problems but making sure you eat right and get enough rest is important. All that old fashioned advice is really true! Patience is also something you'll learn to deal with because for many of us, it took a few years before we felt better.

RebeccaLynn Rookie

One thing about your diet which I would consider changing is eating red meat. There is such a thing as eating therapeutic amounts of meat to help with anemia issues. The type of iron, hemi iron, which helps to overcome anemia, is only found in red meat. I am not advocating eating lots of red meat but once a week is a good start to help with low energy levels. I don't know if you suffer from anemia but it sounds like you do and including red meat in your diet is a good way to combat that. Iron supplements are OK but red meat is better for that. I never ate much red meat until I couldn't shake my anemia issues. It helped that tremendously.

RebeccaLynn Rookie

Hi I had mono caused by Epstein barr a little over 4 years ago, along with Lyme Disease, after many months of treatment the Lyme is in remision, the mono took over a year to be negative but I still deal with the virus like you I get sick alot, I hate it, but it is something that the heart dcotor told me that can happen as eebv messes with your immune system, the problem with gluten came along right in the middle of dealing with these other things but honestly think through out my life I did have problems with it. Being gluten-free has helped with stomach issues but am stopping dairy to see if it helps even more which so far I do notice a difference, from what the doctor told me it can taake take 5 years or more for the body to get back to normal with epstein barr and some never do, but I think doing everything as healthy as you can is the best thing you can do. I wish I had more answers but mainly wanted you to know you are not alone.

Thanks so much! That is helpful to know that there are others out there like me and I am not insane. I think I will give my doctor a call & get tested for EBV & Lyme disease, as I will do just about anything to feel better at this point!

Jestgar Rising Star

The type of iron, hemi iron, which helps to overcome anemia, is only found in red meat.

Absorb-able iron is found in any meat.

Open Original Shared Link

bisja Apprentice

Thanks so much! That is helpful to know that there are others out there like me and I am not insane. I think I will give my doctor a call & get tested for EBV & Lyme disease, as I will do just about anything to feel better at this point!

thats a good idea RebeccaLynn better safe then sorry, I will worn you that that theres alot of controversy with doctors about lyme and ebv, but then again there is the same with gluten intolerance too but is still good to be tested. Do you have muscle pain? Neck pain etc?


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



Celiac.com Sponsor (A8-M):



RebeccaLynn Rookie

thats a good idea RebeccaLynn better safe then sorry, I will worn you that that theres alot of controversy with doctors about lyme and ebv, but then again there is the same with gluten intolerance too but is still good to be tested. Do you have muscle pain? Neck pain etc?

what kind of controversy w EBV & Lyme? I had a blood test last Fall and thought that they tested for each, but can't remember, as all came back negative. I don't have muscle or neck pain, I do get a stiff neck sometimes, but I think that is because I sew all day for my job. Interesting.

Gemini Experienced

Absorb-able iron is found in any meat.

Open Original Shared Link

Yes, that is technically true but the best source is from red meat. That's been long established. Any good doctor or nutritionist will emphasize the inclusion of red meat for anemia. Worked wonders for me and I was severely anemic for years while undiagnosed with Celiac.

RebeccaLynn Rookie

Yes, that is technically true but the best source is from red meat. That's been long established. Any good doctor or nutritionist will emphasize the inclusion of red meat for anemia. Worked wonders for me and I was severely anemic for years while undiagnosed with Celiac.

The only problem with that is I am severely intolerant to beef & pork - I get gastro pyrotechnics like you wouldn't believe. Worse than with gluten & dairy. I tried some red meat a few months ago, as my naturopath said I could have it, and it was worse than the stomach flu! So, I am focusing on my supplement, and also iron-rich veggies. Hoping that helps me feel better.

Jestgar Rising Star

Yes, that is technically true but the best source is from red meat.

Yes, but there are people that choose not to eat red meat. They need to know that other options are available.

bisja Apprentice

what kind of controversy w EBV & Lyme? I had a blood test last Fall and thought that they tested for each, but can't remember, as all came back negative. I don't have muscle or neck pain, I do get a stiff neck sometimes, but I think that is because I sew all day for my job. Interesting.

Rebecca most doctors believe that you have to be positve for mono for the virus to make you feel rotten, my heart doctor explained it as the gray area of medicine and that doctors are split on their thinking of it. Lyme Disease is very misunderstood by most doctors some of the tests they use are not accurate, and some of the treatment and lenght of treatment is not enough to get rid of the bacteria or to even put it into remission. Its constantly be argued about with the CDC and the people who deal with Lyme. Are you anemic now? If so that will make you very tired and your immune system down. How did your Naturopath check you for ebv?

cassP Contributor

Hi I am new to this forum and am excited to meet you! I found out about my gluten intolerance last Oct 2010 and though I haven't had as many all-night gastrointestinal episodes since then, I still dont have any energy and I am fatigued ALL THE TIME. I am also sick with a cold or the flu every 2-6 weeks like clockwork. My glands in my throat are sore & swollen often & I feel run down like I am getting sick with a cold/flu at least once a week.

My Naturopath says I also have Epstein Barr Virus. Has anyone else had similar immune issues with gluten intolerance? Is this related to possible Celiac, or is my suppressed immune system from something else going on? Spleen? Adrenals?

I dont eat gluten (obviously), dairy, red meat, pork, or anything processed, and can't figure out how my diet can get any healthier, and why I still don't feel good. I am taking sublingual B12, Floradix Iron, and a Zinc supplement as well as digestive enzymes. I have done an elimination diet, but didnt notice a difference as I had hoped.

Please help?!

have you had your Vitamin D levels or your Thyroid checked??? both can lead to getting sick a lot

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. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

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

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

    • Total Members
      133,327
    • Most Online (within 30 mins)
      7,748

    dnamutant
    Newest Member
    dnamutant
    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

    • knitty kitty
      @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
      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
      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
      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
×
×
  • 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.