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

Newly Diagnosed, Enlarged Lymph Nodes Help?


md395

Recommended Posts

md395 Newbie

I have been recently diagnosed in January as having Celiac Disease. I've, been gluten free, ever since. Recently found I had enlarged lymph nodes mulptile places. Severly anemic and undergo, dextran (iron infusions) had a recent biopsy was negative (lymphoma). I still have night sweats, seem to catch any virus under the sun. Any celiacs experience or know of same problems?? If so, what was outcome or any suggestions???. Dr's say, "watch and see," in months to come. Im 34 and feel like 80. I am desperate for some advice or input from other celiacs....hoping somebody to shed some light. Thank you. ....


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



Celiac.com Sponsor (A8-M):



gfpaperdoll Rookie

Hello & welcome - I have no specific advice for your conditions - except to give you my standard broad suggestions, which would include.

get all your mineral & vitamin levels checked, take B12 regardless of the outcome of that one

eat whole foods plainly prepared - to try to sniff out any other intolerances

try to go as grain free as you can - think if white potatoes, tomatoes, soy, dairy, nuts, or eggs, are causing you a problem.

omit all artificial sugar IMO they are really bad, omit food colorings & preservatives

check all your personal care products - have a gluten free house, do not be walking around bakeries or pizza places - check all your meds to make sure they are gluten-free

buy organic when you can...

Lizz7711 Apprentice

NIght sweats and catching viruses easily makes me think thyroid/adrenals. I just found out i'm celiac and also hypothryoid and I have adrenal fatigue...so i'd get those checked out for sure. I'm no expert, but I believe the lymph system is a huge indicator of inflammation and the immune system going into action. If you have multiple inflamed lymph nodes, I would think your body is in high gear against an enemy. I'd recommend a food elimination diet for 6 weeks to figure out what other food allergies/sensitivities you might have. Or, if you haven't cut out dairy and soy yet...I would just stop consuming anything with them for 3 weeks and see how you feel...then reintroduce one at a time and see how you feel.

I'd also recommend taking 3000mg vitamin C every day (1000mg three times a day if possible) to boost your immune system. There's also a good book on adrenal fatigue called "Adrenal Fatigue: the 21st centrury syndrome" by Wilson. Being celiac your whole life without knowing it puts alot of added stress on adrenals so many celiacs have almost burned out adrenals. I personally started taking Cortef (low dose hydrocortisone) last year for adrenal fatige and wow, what a life saver...no more fatigue, no more severe irritability...and that was before I found out about the gluten problem.

good luck and hope you feel better soon!

Liz

MelliDuff Rookie

Hi ! :lol:

Bear with me I know this is long..... :o

I have had the same thing going on with me since December 07 - I felt awful 2 weeks out of most months. I was sick and TIRED all the time -Before that December in 07, I was in GREAT shape running 3 plus miles 6 days a week - I was very active- That ended in December -Since then I caught ANY cold or flu or stomach bug or whatever... if i was JUST standing next to someone sick I WOULD GET IT - Not joking - I felt 70 years old ALL the time - I was anemic and had b-12 deficiencies and I am hypothyroid- but this tired was not the same, this tired was unexplainable exhaustion with no relief - trust me I know tired but this was beyond "tired". I knew something was wrong.

My doctor kept giving me meds and antibiotics, vitamins, to try to get the sicknesses to go away (said i had the flu said i had stomaches virus -3 times in one month- said I had bacterial infections found that I was anemic it went on on until 2 weeks ago.)I had so much blood work done over the course of Dec until now, I couldn't even think about another needle in my arm without crying. :(

FINALLY two weeks ago the Lymph nodes behind my ear and jaw line swelled up and were HUGE. I looked like I had the mumps(which i didn't) they where gigantic. You couldn't see the line of my jaw- so off again I went to the doctor and off again he did blood work- He thought I might have mono which I did not - He tested me for something called The Epstein Barr Virus - DING that was it. AMEN :blink: After being sick since November / Dec- we finally had something to indicate WHY - My doctor seemed as relived as I was to discover what was wrong.

Epstein Barr is a virus that causes mono and a lot of other things, 95% of the population has it living dormant in their body. Mine somehow became active.

The good new was that I finally knew what was making me sick ( i thought i had cancer or something because I felt 70 and i was only 32). The bad news was that since I did not have MONO with the Epstein Barr virus I would have to wait and let it run its course. I was told that I would be sick like this until JANUARY of next year. I'm not kidding - I was shocked to find out a virus could make me sick THIS sick for and entire 8 months to one year.

I would suggest you get test for EBV - Something is wrong with your immune system... If your getting the swelling that indicates a VIRAL infection - In fact its normal for your lymph nodes to swell under your arms after having gotten over a virus. If your getting sick over and over that may mean you have an ongoing virus that is flaring up. Ask the doctor to test you for viral infections and EVB.

Do you have a sore throat and how long ago did you start getting sick ? You may want to get your thyroid ANTIBODIES check along with your THS t4 and t3 lvls. It is common for celiac to have thyroid disorders.

Also start taking a good muti vitamin and b12. B12 cant hurt you and it will give you energy.

Ps the night sweats SUCK! :lol:

md395 Newbie
Hi ! :lol:

Bear with me I know this is long..... :o

I have had the same thing going on with me since December 07 - I felt awful 2 weeks out of most months. I was sick and TIRED all the time -Before that December in 07, I was in GREAT shape running 3 plus miles 6 days a week - I was very active- That ended in December -Since then I caught ANY cold or flu or stomach bug or whatever... if i was JUST standing next to someone sick I WOULD GET IT - Not joking - I felt 70 years old ALL the time - I was anemic and had b-12 deficiencies and I am hypothyroid- but this tired was not the same, this tired was unexplainable exhaustion with no relief - trust me I know tired but this was beyond "tired". I knew something was wrong.

My doctor kept giving me meds and antibiotics, vitamins, to try to get the sicknesses to go away (said i had the flu said i had stomaches virus -3 times in one month- said I had bacterial infections found that I was anemic it went on on until 2 weeks ago.)I had so much blood work done over the course of Dec until now, I couldn't even think about another needle in my arm without crying. :(

FINALLY two weeks ago the Lymph nodes behind my ear and jaw line swelled up and were HUGE. I looked like I had the mumps(which i didn't) they where gigantic. You couldn't see the line of my jaw- so off again I went to the doctor and off again he did blood work- He thought I might have mono which I did not - He tested me for something called The Epstein Barr Virus - DING that was it. AMEN :blink: After being sick since November / Dec- we finally had something to indicate WHY - My doctor seemed as relived as I was to discover what was wrong.

Epstein Barr is a virus that causes mono and a lot of other things, 95% of the population has it living dormant in their body. Mine somehow became active.

The good new was that I finally knew what was making me sick ( i thought i had cancer or something because I felt 70 and i was only 32). The bad news was that since I did not have MONO with the Epstein Barr virus I would have to wait and let it run its course. I was told that I would be sick like this until JANUARY of next year. I'm not kidding - I was shocked to find out a virus could make me sick THIS sick for and entire 8 months to one year.

I would suggest you get test for EBV - Something is wrong with your immune system... If your getting the swelling that indicates a VIRAL infection - In fact its normal for your lymph nodes to swell under your arms after having gotten over a virus. If your getting sick over and over that may mean you have an ongoing virus that is flaring up. Ask the doctor to test you for viral infections and EVB.

Do you have a sore throat and how long ago did you start getting sick ? You may want to get your thyroid ANTIBODIES check along with your THS t4 and t3 lvls. It is common for celiac to have thyroid disorders.

Also start taking a good muti vitamin and b12. B12 cant hurt you and it will give you energy.

Ps the night sweats SUCK! :lol:

  • 2 weeks later...
md395 Newbie

bear with me..im new to all this.. thank you for the imput.. if the epstein virus is what is known as "mono" I have had that already...

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 commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      3

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

    2. - trents replied to Matthias's topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    3. - Matthias posted a topic in Coping with Celiac Disease
      1

      Unexpected gluten exposure risk from cultivated mushrooms

    4. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

    5. - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

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

    • Total Members
      133,326
    • Most Online (within 30 mins)
      7,748

    Jaxon Reed
    Newest Member
    Jaxon Reed
    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

    • trents
      Welcome to the celiac.com communiuty, @Matthias! Yes, we have been aware that this can be an issue with mushrooms but as long as they are rinsed thoroughly it should not be a problem since the mushrooms don't actually incorporate the gluten into their cellular structure. For the same reason, one needs to be careful when buying aged cheeses and products containing yeast because of the fact that they are sometimes cultured on gluten-containing substrate.
    • Matthias
      The one kind of food I had been buying and eating without any worry for hidden gluten were unprocessed veggies. Well, yesterday I discovered yet another pitfall: cultivated mushrooms. I tried some new ones, Shimeji to be precise (used in many asian soup and rice dishes). Later, at home, I was taking a closer look at the product: the mushrooms were growing from a visible layer of shredded cereals that had not been removed. After a quick web research I learned that these mushrooms are commonly cultivated on a cereal-based medium like wheat bran. I hope that info his helpful to someone.
    • trents
      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
×
×
  • 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.