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

Extreme Exhaustion And Body Aches?


Amy0916

Recommended Posts

Amy0916 Newbie

As I've been reading about Celiac's Im convinced more and more this may be what I have. Maybe.

I've had major emotional and stress trauma early 2009 with a divorce, moving, loss of job, and my body rejecting an IUD. All in a matter of two months.

Since then I've had loss of hair, extreme fatigue, headaches, depression, daily body and join pain, and bouts of stomach pains and gas.

My stomach has never been an issue my whole life (steel lined stomach) and I do not have any problems on the whole with my stomach or pain or any bathroom issues. But I have had in the past year bouts of stomach related issues, pain, feeling sick, diarrhea, etc. Though I do not think this alone is enough to constitute what most people with celiac's go through, I do think it's noteworthy as I have definitely noticed something going on with my stomach in general. I remember one month when I would get so sick after eating anything.

I am not skinny and do not have any weight loss issues (Im about 20 pounds overweight actually)

Some days I can barely get out of bed and my head feels like it's stuffed full of cotton.

I've plugged in my symptoms to many site online and Celiacs' and Fybromyagia are the two that are consistently showing up.

My overall general body feeling and loss of hair are the two main symptoms that bother me. Even when I take alot of vitamins it doesn't get better.

Im sick of feeling like pure crud all of the time.

I just can't take it anymore.

I have crappy health insurance and my clinic is not the greatest.

Could it be that I have this?


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



Celiac.com Sponsor (A8-M):



tdads Newbie

As I've been reading about Celiac's Im convinced more and more this may be what I have. Maybe.

I've had major emotional and stress trauma early 2009 with a divorce, moving, loss of job, and my body rejecting an IUD. All in a matter of two months.

Since then I've had loss of hair, extreme fatigue, headaches, depression, daily body and join pain, and bouts of stomach pains and gas.

My stomach has never been an issue my whole life (steel lined stomach) and I do not have any problems on the whole with my stomach or pain or any bathroom issues. But I have had in the past year bouts of stomach related issues, pain, feeling sick, diarrhea, etc. Though I do not think this alone is enough to constitute what most people with celiac's go through, I do think it's noteworthy as I have definitely noticed something going on with my stomach in general. I remember one month when I would get so sick after eating anything.

I am not skinny and do not have any weight loss issues (Im about 20 pounds overweight actually)

Some days I can barely get out of bed and my head feels like it's stuffed full of cotton.

I've plugged in my symptoms to many site online and Celiacs' and Fybromyagia are the two that are consistently showing up.

My overall general body feeling and loss of hair are the two main symptoms that bother me. Even when I take alot of vitamins it doesn't get better.

Im sick of feeling like pure crud all of the time.

I just can't take it anymore.

I have crappy health insurance and my clinic is not the greatest.

Could it be that I have this?

You simply will not know until you visit a GI and get tested. The Dr. will see if you are allergic or have an intolerance to dairy as well, since it is very common to have Celiac's and a dairy intolerance.

Two weeks before you go for blood work to determine if you have Celiac's, you should be conscience of eating wheat products. Depending on where you are tested and if the severity of your celiac's, some tests will show up negative when in fact you really do have celiac's. In other words, be sure to eat a little more wheat related product before you are tested to ensure a proper diagnosis.

I would also recommend a colonoscopy. If it weren't for that, I would have never known that I also have ulcerative colitis on top of the celiac's.

My symptoms were this before going gluten free: (hope it helps and remember each person's tolerance to wheat/gluten is different)

  1. Diarrhea (could be up to 10+ times a day and very smelly. Not an issue except when I accidentally digest wheat/gluten)
  2. Gas (gone)
  3. Bloating (gone)
  4. Scalp psoriasis (gone)
  5. Hair loss (still have this issue)
  6. Eczema (gone)
  7. Rosacea (gone)
  8. "Foggy thinking" (gone)
  9. ADD (still ADD, but has gotten better with better diet. you might want to look into this, as I didn't realize it would be related but new research is showing that it is.)
  10. Heat rash (very infrequently, but it has happened)
  11. Extreme tiredness (so much so that I become delirious if I don't get enough sleep. I require a minimum of 8, but function so much better on 10-12 hours and could still take a nap in the afternoon. I do have more energy now, but I still require 8+ hours of sleep)
  12. Allergies to dogs/cats, mold, dust, pollen, smoke (gone)
  13. Asthma (gone)

Best of luck with your diagnosis!

lucia Enthusiast

You simply will not know until you visit a GI and get tested.

I wouldn't have known if I had just relied on tests. My doctor diagnosed me on the basis of diet response. The tests for celiac are known to have high rates of false negatives.

cassP Contributor

I wouldn't have known if I had just relied on tests. My doctor diagnosed me on the basis of diet response. The tests for celiac are known to have high rates of false negatives.

Lucia- i want YOUR doctor!! i want an official diagnosis- & i am NOT going back on wheat for a biopsy- NO WAY

crimsonviolet Apprentice

I was feeling pretty similarly before I went off gluten. My main reason was my kids' teeth, but since I had been having such bad joint pain, I began following the diet as well. I realized the other day that it's been at least 2 weeks since I took ANY ibuprofen. Before I went gluten-free I had to take 3-4 in the morning just to get moving. I was in *that* much pain, but it had become so ubiquitous that it had become normal. I'm still pretty foggy and my mood has nowhere near stabilized, but the overall pain level has become much much lower.

I probably won't be getting formally tested because it will cost so much, even with my insurance, but the diet has made enough of a difference for me that I consider myself diagnosed.

Skylark Collaborator

Hi and welcome. Yes, it could be celiac/gluten intolerance. Going on the diet to see if it helps is free. It's hard to get positive celiac blood tests anyway. The thing you need to know is that if you go off gluten, you have to eat gluten and get sick all over again if you ever want to be tested. Tdads said 2 weeks on gluten, but really it's a minimum of a month on gluten for testing.

I think you can mail order this kit if you want to try it before you go off gluten. Open Original Shared Link There's a phone number for US inquires. It's not terribly sensitive, meaning it can definitely give a false negative, but it's not too expensive. If you come up positive on it you have strong evidence for celiac disease.

As far as the diet, you have to be strict and try it for a few months. If you feel better, you have your answer.

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. - Dakota01 commented on Scott Adams's article in Winter 2026 Issue
      1

      Are Gluten-Free Processed Foods Making You Sick? (+Video)

    2. - JoJo0611 posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      0

      Awaiting Biopsy results

    3. - cristiana replied to emzie's topic in Related Issues & Disorders
      1

      Stomach hurts with movement

    4. - emzie posted a topic in Related Issues & Disorders
      1

      Stomach hurts with movement


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,455
    • Most Online (within 30 mins)
      7,748

    Suelle
    Newest Member
    Suelle
    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

    • JoJo0611
      I have had my endoscopy this morning with biopsies. My consultant said that it looked like I did have coeliac disease from what he could see. I now have to wait 3 weeks for the biopsy results. Do I continue eating gluten till my follow appointment in three weeks.  
    • cristiana
      Hi @emzie and welcome to the forum. Perhaps could be residual inflammation and bloating that is causing sensitivity in that area.  I was diagnosed with coeliac disease in 2013 and I remember some years ago my sister telling me around that time that she had a lady in her church, also a coeliac, who  had real pain when she turned her torso in a certain direction whilst doing exercises, but otherwise was responding well to the gluten-free diet. As far as I know is still the picture of health. I often end up with pain in various parts of my gut if I eat too much rich food or certain types of fibre (for some reasons walnuts make my gut hurt, and rice cakes!) and and as a rule, the pain usually hangs around for a number of days, maybe up to a week.   When I bend over or turn, I can feel it.  I think this is actually due to my other diagnosis of IBS, for years I thought I had a rumbling appendix but I think it must have just been IBS.  Reading the experiences of other sufferers, it seems quite typical.  Sensitized gut, build up of gas - it stands to reason that the extra pressure of turning can increase the pain. When I am glutened I get a burning, gnawing pain in my stomach on and off for some days - it isn't constant, but it can take up a few hours of the day.  I believe this to be gastritis, but it seems to hurt irrespective of movement.   Anyway, you are doing the right thing to seek a professional opinion, though, so do let us know how you get on.   Meanwhile, might I suggest you drink peppermint tea, or try slices of fresh ginger in hot water? A lot of IBS sufferers say the former is very helpful in relieving cramps, etc, and the latter is very soothing on the stomach. Cristiana
    • emzie
      Hi! One of the usual symptoms I have with a gluten flare up has deviated a bit and I thought I'd search for advice/opinions here. Also to see if anyone goes through similar stuff. Monday all of a sudden I got really bad pain in my stomach (centre, right under the chest, where the duodenum would be located). I ended up having to throw up for 2 hours, my body was trying to get rid of something from all sides and it was just horrible. Since then I havent been nauseous anymore at all, but the pain has stayed and it always worsens the moment i start moving. The more I move the more it hurts, and when i rest longer it seems to dissapear (no movement). I've had this before, but years ago I think around when I first got diagnosed with coeliac, where each time I moved, my stomach would hurt, to the point where I went to the ER because doctors got freaked out. That only lasted 1 night though, and Now it's already wednesday, so 3 days since then, but the pain persists and remains leveled. it doesn't get crazy intense, but it's still uncomfortable to the point I cant really go out because Im afraid itll turn into a giant flare up again. I couldn't think of where I could possibly have been glutened at this bad of a level and why it hasn't passed yet. I went to the GP, and as long as I have no fever and the pain isnt insane then its fine which I havent had yet. Tomorrow im also seeing a gastroenterologist specialized in IBS and coeliac for the first time finally in years, but I thought I'd ask on here anyway because it still hasnt dissapeared. It also hurts when someone presses on it. Maybe it's just really inflamed/irritated. I'm just frustrated because I'm missing out on my uni lectures and I do a sports bachelor, so I can't get behind on stuff & next to that i'm also going to go to the beach with my boyfriend's family this weekend: ( 
    • Flash1970
      Hi. So sorry to hear about your shingles. There is a lidocaine cream that you can get at Walmart that will help numb the pain.  That's what I used for mine. It can't be put near your eyes or in your ears. I hope your doctor gave you valacyclovir which is an antiviral.  It does lessen the symptoms. If it is in your eyes,  see an ophthalmologist.  They have an antiviral eye drop that can be prescribed.  Shingles in the eye could cause blindness.  I was unsure whether you have celiac or not.  If you do,  follow the diet.  I believe that extra stress on your body does affect everything. Shingles can recur. If you start getting the warning signs of nerves tingling,  see the dr and start taking the valacyclovir to prevent a breakout. If I sound technical,  I am a retired pharmacist. 
    • Scott Adams
      You are right to be proactive, as research does indicate that individuals with celiac disease can have a higher predisposition to enamel defects, cavities, and periodontal issues, even with excellent oral hygiene. While many people with celiac successfully undergo orthodontic treatment without complication, your caution is valid. It may be beneficial to seek a consultation with an orthodontist who is familiar with managing patients with autoimmune conditions or who is willing to collaborate with your daughter's gastroenterologist or a periodontist. They can perform a thorough assessment of her current oral health, discuss your specific concerns about recession and decay, and create a tailored hygiene plan. This second opinion could provide a clearer risk-benefit analysis, helping you decide if addressing the cosmetic concern of the lower teeth is worth the potential risks for your daughter, especially if they are not currently affecting function or her confidence. 
×
×
  • 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.