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md395

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  1. I live in rural wisconsin and was diagnosed with celiac disease and tested positive for Crohn's disease also. Still ill, (enlarged lymph nodes, biopsy/neg, night sweats, etc) I see that a lot of celiac's on this site have a lot of other diseases/conditions and /or have tests done to verify their health status. Most of these tests I have never heard of, let alone had done on me. What is a must as a "newly diagnosed" celiac to ask for from a doctor, to make sure my body doesnt have associated diseases/disorders, due to nutrition or from the celiac itself? I already undergo iron infusions, because my body is unable to absorb iron via supplements etc. Any suggestions or direction would be most helpful going on 6 months of chronic illness, been gluten-free that long also. Thank you all for you input. -mary :(


  2. 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:


  3. Well, I am not sure if this is going to help your situation or make you feel any better. But, I only have been gluten free just over 4 months, and I experienced that when you do have an exposure (ingesting gluten) after being gluten free for a while, the effects can be absoloutely horrible, worse than when you were intially ingesting gluten. So, yes, symptoms can be very severe, especially after been gluten-free for a while.


  4. let me first say, i've been gluten-free fully for around a month...i definitely felt better in some ways, but i've had so many (neuro/mental) symptoms that i can't even tell how, but i just all around feel a bit better

    but last night, i started to get short of breathe, felt like it was 200 degrees and my skin was on fire, could barely move....i was laying there and i felt like i was having nightmares, yet awake, and i felt like i was extremely drugged up or something....i just felt unbelievably off and it was a bit scary, obviously i feel the same today but...it feels a lot worst than how i felt before(this reaction), and i realized that most of these major symptoms, are things i was suffering with before that i guess they were all getting a bit better....the heat blowing on my feeling used to be so bad, but after having it now, i realized that not long after going gluten-free, it wasn't really an issue

    the only questionable thing i had was curly's ribs...lots of questionable ingredients, and i searched on here yet only found one mention of it saying it was fine so things could have changed, and i didn't call the company which was a stupid move but i needed something real quick and figured it was fine

    but my question, is it normal to have scary symptoms like that because of gluten, or did anybody else have things like that? the thing was, it was a whole rack of ribs too lol, and being new to the diet, if it was that, it probably hit me hard...i felt this way not long after, but i'm sure that's common....it just feels like gluten REALLY attacks my nerves/brain...definitely looking to get some sublingual b12/magnesium soon, but i'm wondering what else i could do from those who this sounds similiar to


  5. 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. ....