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

Sick And At My Wits End!


Mandy F.

Recommended Posts

Mandy F. Apprentice

O.k. I'm freaking out and don't know what to do... I've been sick for over a month now. It started out as a sinus infection and the doc put me on antibiotics but I kept getting worse instead of better. My doc took me off the antibiotics, after I had a bad reaction to the second round, and thinks this is just a virus. My sinus symptoms are gone, but my glands are swollen (and started swelling more after the sinus symptoms went away) and very sore, my joints are all achey, and I'm so exhausted that I'm literally crying! Being so exhausted, I've been sleeping nearly 16 hours a day--and missing work and school because of it. That's why I'm freaking out... I've missed so much work that I'm having trouble paying my bills now and I've missed so much school that I will finish this semester (next week) with at least one incomplete... What's worse, is that last Friday, I tried to go to school and had 4 people (two of whom I didn't even know) stop me in the hall and ask if I was o.k. I must look like I'm going to drop dead any second!

The worst part about all of this is that I got my Celiac diagnosis about two days after I got sick (from a biopsy I had 3 weeks prior) and now I can't just order in when I'm so tired that I can hardly stand.

I don't know what to do anymore. I've been drinking almost a gallon of fluids a day; eating tons of oranges, pineapple, bananas, etc. (cause the doc told me to increase my vit-C); taking a multivitamin; and God knows I've been sleeping! I just don't think that this is a virus, it should be going away, right?!

My doc has checked my blood count (normal except that my iron is actually up :rolleyes: ), urine (found protein), and checked me for mono, cytomegalovirus, and lupus (all negative), last week she had me get a CT scan of my sinuses and neck but i haven't gotten the results yet...

Does anyone have any ideas that I should ask my doc to check me for? Should I get a new doc? I just want to know how long this is going to go on so that I know when I can get my life back!

Mandy


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor
O.k. I'm freaking out and don't know what to do... I've been sick for over a month now. It started out as a sinus infection and the doc put me on antibiotics but I kept getting worse instead of better. My doc took me off the antibiotics, after I had a bad reaction to the second round, and thinks this is just a virus. My sinus symptoms are gone, but my glands are swollen (and started swelling more after the sinus symptoms went away) and very sore, my joints are all achey, and I'm so exhausted that I'm literally crying! Being so exhausted, I've been sleeping nearly 16 hours a day--and missing work and school because of it. That's why I'm freaking out... I've missed so much work that I'm having trouble paying my bills now and I've missed so much school that I will finish this semester (next week) with at least one incomplete... What's worse, is that last Friday, I tried to go to school and had 4 people (two of whom I didn't even know) stop me in the hall and ask if I was o.k. I must look like I'm going to drop dead any second!

The worst part about all of this is that I got my Celiac diagnosis about two days after I got sick (from a biopsy I had 3 weeks prior) and now I can't just order in when I'm so tired that I can hardly stand.

I don't know what to do anymore. I've been drinking almost a gallon of fluids a day; eating tons of oranges, pineapple, bananas, etc. (cause the doc told me to increase my vit-C); taking a multivitamin; and God knows I've been sleeping! I just don't think that this is a virus, it should be going away, right?!

My doc has checked my blood count (normal except that my iron is actually up :rolleyes: ), urine (found protein), and checked me for mono, cytomegalovirus, and lupus (all negative), last week she had me get a CT scan of my sinuses and neck but i haven't gotten the results yet...

Does anyone have any ideas that I should ask my doc to check me for? Should I get a new doc? I just want to know how long this is going to go on so that I know when I can get my life back!

Mandy

Hi Mandy, You poor thing you sound like you feel awful. First off have you deglutened your home, including your toaster, toiletries, toothpaste, makeup? Be diligent about crosscontamination even miniscule amounts once you are gluten-free can cause a reaction. I recently went through a battery of tests including blood, heart stress, lung function, abdominal ultrasound and x-rays because I was having problems with glands, fatigue, joint pain and mild D. I've been a fanatic about being gluten-free so I KNEW it wasn't that. Guess what, I had changed shampoos and was poisoning myself. It has taken over a month for me to get complete relief from that. Not everything is caused by gluten of course but I would be very sure you have gotten all this poison out of your life.

One of the things I do for an easy meal when I am not feeling great is I take a boneless chicken breast and place it in a foil packet with some raw veggies in a seperate package beside it. Put whatever seasoning you want and that is gluten-free on the chicken. Wrap everything tight and toss in the oven for about a half hour the chicken is 165 degrees. I also make buckwheat ceral with lots of cinnamon and sugar, much like cream of wheat and quick comfort food.

I hope you get to feeling better soon.

loraleena Contributor

I suspect candida (yeast overgrowth). You were on antibiotics and had sinus issues which they just found out is commonly caused by fungus. I have all your symptoms and have been gluten free for 9 months. I know I have candida and am about to embark on clearing this. It is common in celiacs as is parasite infestation. Get online and read about this. I know I am not being glutened by accident either! Were you gluten free before being diagnosed?

penguin Community Regular

If you're still in the early stages of mono, sometimes the blood test doesn't show it. Even then, not everyone will show on the blood test. What you described is what I felt like with mono. I looked like a dead bullfrog. I felt like one too.

I hope you get to the bottom of it! Feel better!

JenAnderson Rookie

Dead bullfrog....Ewwwwww That mental picture was a giggler... Sorry Chelse I've never heard that one before. :)

penguin Community Regular
Dead bullfrog....Ewwwwww That mental picture was a giggler... Sorry Chelse I've never heard that one before. :)

I did though! I had a bad case (triggered celiac). My glands swelled on my neck to enormous size, I was very very pale, I had dark circles under my eyes, and my mouth gaped open because I couldn't breathe, swallow, or move. Apparently I smelled like a dead bullfrog also, because whatever toxins my tonsils were getting rid of smelled really bad. I didn't know of course, but my mom and brother said it was awful! The lighting in my mom's apartment was very romantic while I was sick, there were scented candles everywhere :blink:

WGibs Apprentice

Others have given better advice, but just one more thought...I could not handle oranges or pineapple at first...they were just too acidic for my raw system and gave me the D in a big way. Since you said you were eating alot of them, you might want to try a supplement or another source for Vitamin C.

Good luck and I hope you feel better soon!


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



Celiac.com Sponsor (A8-M):



flagbabyds Collaborator

I would say mono, talk to your doc about it, because you sometimes won't show up on the blood.

Sounds like you feel horrible, but hope you get better soon!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Mandy F. Apprentice
I would say mono, talk to your doc about it, because you sometimes won't show up on the blood.

Sounds like you feel horrible, but hope you get better soon!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Well, I've had mono twice, once when I was about 5 and again when I was 16 so the likelihood of it being mono is really slim since it's rare to ever have it more than once. I was also sick before going gluten free because I had my biopsy on March 13 then didn't get my diagnosis until a couple of days after I got sick which wasn't until the begining of April. I've also had cytomegalovirus when I was 18 (which is very very similar to mono) but I don't have it now.

The reason I don't think this is really celiac is because I never really have any celiac symptoms except for about two weeks in January (some nasty D) which is what got me to go to the doctor. My doc was thinking UC or Chrohns because my mom has UC. I just keep thinking that if I've had this since before going gluten-free then shouldn't it be getting better by now? I've also considered going off the diet just to see if it does anything...

I haven't completely de-glutened my house yet, though. I either haven't had time or haven't felt well enough to tackle it yet... I'm hoping to take care of it when school gets out next week... and I'll definetly look up the info on the candidia...

Thanks for all the well wishes and advice!

Mandy

WLJOHNSON Newbie

Hi Mandy,

I'm so sorry that you are feeling so lousy. Your descriptions of your illnesses sound so familiar to me. For years I had Asthma, which would turn into Bronchitis, then into Pneumonia, and I would feel as you do now--exhausted, frustrated, tired, and sick.

After I was told I had Celiac, and started to really stick to the diet, I saw sudden, dramatic changes in my health. Not overnight, of course, but after I stopped eating most canned and processed foods, I felt so much better. I learned to stay away from all grains, then learned that I was allergic to all milk and dairy products, then egg whites and yeast, then certain additives, including casein, whey, maltodextrin, modified food starch, etc.

Yes, it may take a little while for you to be able to interpret what your body is telling you right now, but feel assured that, in time, this will happen. You will become so attuned to what your symptoms are, that you will run from those foods, and you will search out new and more healthful substitutes. Each of us is different, and each of us has different ingredients that we can tolerate. I hope and pray that you will learn soon what foods are best for you, and that you will feel better and better each day! Welda Lou

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,762
    • Most Online (within 30 mins)
      7,748

    dangunderson
    Newest Member
    dangunderson
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      For back pain, I take a combination of Cobalamine B12, Pyridoxine B 6, and Thiamine B 1 (in the form Benfotiamine), which have an analgesic effect.  These three B vitamins together work way better than those over the counter pain relievers.  Theses are water soluble B vitamins that are easily excreted via the kidneys if not needed.  Thiamine will also help the nausea. Interesting Reading... Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/#:~:text=Some of these processes include,Analgesics
    • knitty kitty
      @stephaniekl, welcome to the forum, Is your daughter taking any nutritional supplements?   Weight loss and failure to thrive are two symptoms of thiamine insufficiency.  Thiamine deficiency symptoms are not recognized as such by doctors.   I experienced similar symptoms when I became malnourished.  Thiamine deficiency symptoms can become worse quickly, and can affect one emotionally and mentally.  Although blood tests for thiamine aren't accurate, do have your daughter checked for nutritional deficiencies.  Thiamine B 1 works with the other B vitamins and magnesium.  Thiamine and Niacin B 3 help improve Gerd.  All the B vitamins are frequently low due to malabsorption.  Vitamin D will help calm the immune system.  Thiamine helps the immune system fight off viruses like those tick borne illnesses.   Thiamine Mononitrate, which is in many vitamin supplements, is not bioavailable.  I was taking a multivitamin containing thiamine mononitrate and still became deficient in thiamine. Thiamine in the form Benfotiamine has been shown to promote intestinal healing.  A form called TTFD (tetrahydrofurfuryl disulfide) is also excellent for correcting thiamine deficiency.  A combination of Thiamine, Cobalamine B12, and Pyridoxine B 6 has analgesic properties.  I take it for back pain.   Keep us posted on your progress! Interesting Reading... The importance of thiamine (vitamin B1) in humans https://pmc.ncbi.nlm.nih.gov/articles/PMC10568373/#:~:text=Thiamine absorption in the jejunum,system [51–53].
    • trents
      Has prednisone or some other systemic steroid been tried that might quiet her immune system down for a while? I have two acquaintances with Lyme's disease. It is a wicked condition that has long fingers.
    • stephaniekl
      We have.  She is so limited as to what she can eat.  She has a nutritionist, but they are even at a loss.  Right now, her pain is so significant that she can only eat 5-10 bites a meal.   We just got some labs back today and she is hypoglycemia, anemic and her immune system is shot.  She also is positive for 3 tickborne illnesses.  Thanks for your help! 
    • RMJ
      A much better suggestion than that of the new doctor!
×
×
  • 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.