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.

  • 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 xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      My journey is it gluten or fiber?

    2. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      My journey is it gluten or fiber?

    3. - Oliverg posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      0

      Glutened

    4. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      My journey is it gluten or fiber?

    5. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      My journey is it gluten or fiber?

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

    • Total Members
      132,768
    • Most Online (within 30 mins)
      7,748

    Cora Pifer
    Newest Member
    Cora Pifer
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      I take both Benfotiamine and TTFD.   You might want to start with the Benfotiamine for a few days and then add in the TTFD.   You can look for NeuroMag (Magnesium Threonate).  A magnesium glycinate is fine, too.  Doctor's Best is a good brand.  Don't take more than 300mg total per day of magnesium or it may have a laxative effect.   Be sure to take the B Complex.  The Benfotiamine and TTFD will need the other B vitamins.  
    • xxnonamexx
      Life Extension Benfotiamine with Thiamine has 100MG of Ben and 25 of Thia..... Do you think this is the one I should take or Objective Nutrients Thiamax (TTFD) which has 100MG Thiamine. How much magnesium should I look for? I take the womens 50+ multivitamin since consumerlabs stated and tested that it has the right amount of vitamins and not too much for men and doesn't have BHT which has shown to cause liver cancer in animals. I was never big with multivitamins as well as doctors I just read when I was first going gluten free to take a multi but I think I will stop them and work on trying the super B Thia and Ben, Mag.  
    • Oliverg
      Hi all I’ve been celiac for 4 years now, I’ve done pretty well to avoid it thus far. Last night I took the wrong pizza out of the freezer and ate the whole lot!! The non gluten and gluten pizza boxes are both very similar.   2 hours later I was throwing up violently on my hands and knees over the loo.  .horrendous stomach pains,  My hair was wet from sweat every part of my body was wet. What an awful experience, just had a bad headache today  fortunately.    Is their any products/pills anyone takes if they have realised they have just been glutened to make the symptoms a little less worse.  thanks  
    • knitty kitty
      Yes, do take your B Complex with Benfotiamine or Thiamax.  Thiamine interacts with each of the other B vitamins in the B Complex to make energy and enzymes, so best to take them together earlier in your day.  Taking them too close to bedtime can keep you too energetic to go to sleep.   The Life Extension Benfotiamine with Thiamine is Benfotiamine and Thiamine Hydrochloride, another form of thiamine the body likes.  The Thiamine HCl just helps the Benfotiamine work better.   Read the label for how many milligrams are in them.  The Mega Benfotiamine is 250 mgs.  Another Benfothiamine has 100 mgs.  You might want to start with the 100 mg.    I like to take Thiamax in the morning with a B Complex at breakfast.  I take the Benfotiamine with another meal.  You can take your multivitamin with Benfotiamine at lunch.   Add a magnesium supplement, too.  Thiamine needs magnesium to make some important enzymes.  Life Extension makes Neuro-Mag, Magnesium Threonate, which is really beneficial.  (Don't take Magnesium Oxide.  It's not absorbed well, instead it pulls water into the digestive tract and is used to relieve constipation.)  I'm not a big fan of multivitamins because they don't always dissolve well in our intestines, and give people a false sense of security.  (There's videos on how to test how well your multivitamin dissolves.).  Multivitamins don't prevent deficiencies and aren't strong enough to correct deficiencies.   I'm happy you are trying Thiamax and Benfotiamine!  Keep us posted on your progress!  I'm happy to answer any questions you may have.  
    • xxnonamexx
      I looked further into Thiamax Vitamin B1 by objective nutrients and read all the great reviews. I think I will give this a try. I noticed only possible side affect is possibly the first week so body adjusts. Life Extensions carries Benfotiamine with Thiamine and the mega one you mentioned. Not sure if both in one is better or seperate. some reviews state a laxative affect as side affect. SHould I take with my super B complex or just these 2 and multivitamin? I will do further research but I appreciate the wonderful explanation you provided on Thiamine.
×
×
  • 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.