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
RebeccaLynn
Posted

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
bisja
Posted

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
Gemini
Posted

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
RebeccaLynn
Posted
  • Author

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
RebeccaLynn
Posted
  • Author

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
Jestgar
Posted

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
bisja
Posted

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
RebeccaLynn
Posted
  • Author

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
Gemini
Posted

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
RebeccaLynn
Posted
  • Author

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
Jestgar
Posted

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
bisja
Posted

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
cassP
Posted

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.

Go to topic listing

  • 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
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, Wheat germ has very little gluten in it. Gluten is the carbohydrate storage protein, what the flour is made from, the fluffy part. Just like with beans, there's the baby plant that will germinate ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein. Wheat germ is the baby plant inside a kernel of wheat...
    2. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      49

      Supplements for those Diagnosed with Celiac Disease

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3. Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C. Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine. Weight...
    3. Florence Lillian
      - Florence Lillian replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      11

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

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free. I have a cupboard full of supplements that did not agree...
    4. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      results from 13 day gluten challenge - does this mean I can't have celiac?

      highly unlikely NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean...
    5. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep. One of my relatives is an insomniac and I am sure that is part of the problem. Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read,...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,355
    • Most Online (within 30 mins)
      7,748
    Amy Immerman
    Newest Member
    Amy Immerman
    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
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt, Wheat germ has very little gluten in it.  Gluten is  the carbohydrate storage protein, what the flour is made from, the fluffy part.  Just like with beans, there's the baby plant that will germinate  ("germ"-inate) if sprouted, and the bean part is the carbohydrate storage protein.   Wheat germ is the baby plant inside a kernel of wheat, and bran is the protective covering of the kernel.   Little to no gluten there.   Large amounts of lectins are in wheat germ and can cause digestive upsets, but not enough Gluten to provoke antibody production in the small intestines. Luckily you still have time to do a proper gluten challenge (10 grams of gluten per day for a minimum of two weeks) before your next appointment when you can be retested.    
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      Hello, @asaT, I'm curious to know whether you are taking other B vitamins like Thiamine B1 and Niacin B3.  Malabsorption in Celiac disease affects all the water soluble B vitamins and Vitamin C.  Thiamine and Niacin are required to produce energy for all the homocysteine lowering reactions provided by Folate, Cobalamine and Pyridoxine.   Weight gain with a voracious appetite is something I experienced while malnourished.  It's symptomatic of Thiamine B1 deficiency.   Conversely, some people with thiamine deficiency lose their appetite altogether, and suffer from anorexia.  At different periods on my lifelong journey, I suffered this, too.   When the body doesn't have sufficient thiamine to turn food, especially carbohydrates, into energy (for growth and repair), the body rations what little thiamine it has available, and turns the carbs into fat, and stores it mostly in the abdomen.  Consuming a high carbohydrate diet requires additional thiamine to process the carbs into energy.  Simple carbohydrates (sugar, white rice, etc.) don't contain thiamine, so the body easily depletes its stores of Thiamine processing the carbs into fat.  The digestive system communicates with the brain to keep eating in order to consume more thiamine and other nutrients it's not absorbing.   One can have a subclinical thiamine insufficiency for years.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so the symptoms can wax and wane mysteriously.  Symptoms of Thiamine insufficiency include stunted growth, chronic fatigue, and Gastrointestinal Beriberi (diarrhea, abdominal pain), heart attack, Alzheimer's, stroke, and cancer.   Thiamine improves bone turnover.  Thiamine insufficiency can also affect the thyroid.  The thyroid is important in bone metabolism.  The thyroid also influences hormones, like estrogen and progesterone, and menopause.  Vitamin D, at optimal levels, can act as a hormone and can influence the thyroid, as well as being important to bone health, and regulating the immune system.  Vitamin A is important to bone health, too, and is necessary for intestinal health, as well.   I don't do dairy because I react to Casein, the protein in dairy that resembles gluten and causes a reaction the same as if I'd been exposed to gluten, including high tTg IgA.  I found adding mineral water containing calcium and other minerals helpful in increasing my calcium intake.   Malabsorption of Celiac affects all the vitamins and minerals.  I do hope you'll talk to your doctor and dietician about supplementing all eight B vitamins and the four fat soluble vitamins because they all work together interconnectedly.  
    • Florence Lillian
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Florence Lillian · Posted

      Hi Jane: You may want to try the D3 I now take. I have reactions to fillers and many additives. Sports Research, it is based in the USA and I have had no bad reactions with this brand. The D3 does have coconut oil but it is non GMO, it is Gluten free, Soy free, Soybean free and Safflower oil free.  I have a cupboard full of supplements that did not agree with me -  I just keep trying and have finally settled on Sports Research. I take NAKA Women's Multi full spectrum, and have not felt sick after taking 2 capsules per day -  it is a Canadian company. I buy both from Amazon. I wish you well in your searching, I know how discouraging it all is. Florence.  
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Insomnia help

      By cristiana · Posted

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
×
×
  • 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.