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
Mandy F.
Posted

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
ravenwoodglass
Posted
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
loraleena
Posted

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
penguin
Posted

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
JenAnderson
Posted

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

penguin Community Regular
penguin
Posted
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
WGibs
Posted

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
flagbabyds
Posted

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
Mandy F.
Posted
  • Author
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
WLJOHNSON
Posted

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.

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. Wheatwacked
      - Wheatwacked replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      Supplements for those Diagnosed with Celiac Disease

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium. A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake. With low D your body is not absorbing calcium from your food so it steals it from your bones. Heart has priority over bone. I've been taking 1...
    2. 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...
    3. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      50

      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...
    4. 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...
    5. 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...
  • 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):

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • Wheatwacked
      Supplements for those Diagnosed with Celiac Disease

      By Wheatwacked · Posted

      Raising you vitamin D will increase absorption of calcium automatically without supplementation of calcium.  A high PTH can be caused by low D causing poor calcium absorption; not insuffient calcium intake.  With low D your body is not absorbing calcium from your food so it steals it from your bones.  Heart has priority over bone. I've been taking 10,000 IU D3 a day since 2015.  My doctor says to continue. To fix my lactose intolerance, lots of lactobacillus from yogurts, and brine fermented pickles and saurkraut and olives.  We lose much of our ability to make lactase endogenosly with maturity but a healthy colony of lactobacillus in our gut excretes lactase in exchange for room and board. The milk protein in grass fed milk does not bother me. It tastes like the milk I grew up on.  If I drink commercial milk I get heartburn at night. Some experts estimate that 90% of us do not eat Adequite Intake of choline.  Beef and eggs are the principle source. Iodine deficiency is a growing concern.  I take 600 mcg a day of Liquid Iodine.  It and NAC have accelerated my healing all over.  Virtually blind in my right eye after starting antihypertensive medication and vision is slowly coming back.  I had to cut out starches because they drove my glucose up into the 200+ range.  I replaced them with Red Bull for the glucose intake with the vitamins, minerals and Taurine needed to process through the mitochodria Krebs Cycle to create ATP.  Went from A1c 13 down to 7.9.  Work in progress. Also take B1,B2,B3,B5,B6. Liquid Iodine, Phosphatidyl Choline, Q10, Selenium, D and DHEA.     Choline supplemented as phosphatidylcholine decreases fasting and postmethionine-loading plasma homocysteine concentrations in healthy men +    
    • 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    
×
×
  • 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.