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
Amy0916
Posted

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
tdads
Posted

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
lucia
Posted

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
cassP
Posted

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
crimsonviolet
Posted

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
Skylark
Posted

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.

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. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

      so do you have celiac or not? 🤔 why are your vision issues undiagnosed? 😢 what does your ophthalmologist say? do you have a serious vit A deficiency? what do you take for it? how long have you had celiac disease and how long did it take to get a diagnosis? if you are legally blind there are adaptive devices that will help ...
    2. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, I apologize. Obviously I've confused you with someone else. I have vision problems due to undiagnosed Celiac complications. Being legally blind, y'all look the same from here. You still have not said which new medication you started taking. Parathyroid disorders can affect antibody production. Bone Loss Correlated with Parathyroid...
    3. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

      during the gluten challenge I did not consume any wheat germ the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least. no anemia however the endo who ordered...
    4. knitty kitty
      - knitty kitty replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

      @catnapt, I'm sorry you're having such a rough time. How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them. Do you pressure cook your beans? Were you pressure cooking your wheat germ? What drugs are you taking? Some immunosuppressive drugs affect IgA production. Do...
    5. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      results from 13 day gluten challenge - does this mean I can't have celiac?

      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st worst 12 days of my life Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,368
    • Most Online (within 30 mins)
      7,748
    Helen1984
    Newest Member
    Helen1984
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      so do you have celiac or not? 🤔 why are your vision issues undiagnosed? 😢 what does your ophthalmologist say?  do you have a serious vit A deficiency? what do you take for it? how long have you had celiac disease and how long did  it take to get a diagnosis?   if you are legally blind there are adaptive devices that will help you. I have vision difficulties as well but did not qualify (at least not yet)   do you have a vit A deficiency? why are you undiagnosed? what does your ophthalmologist say? I have a retinal specialist and he tells me my eye condition can not be fixed- until/unless it gets to the point of where surgery is safer since the surgery can leave me actually blind... so you want to wait til it gets really bad 🤪     I hope you find what works for you.    PS   the medication I started at the same time as the gluten challenge is obvious from the condition it's trying to treat. you can google it 😉 it is not an for any auto immune condition.   
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  I apologize.  Obviously I've confused you with someone else.  I have vision problems due to undiagnosed Celiac complications.  Being legally blind, y'all look the same from here.   You still have not said which new medication you started taking.  Parathyroid disorders can affect antibody production.  Bone Loss Correlated with Parathyroid Hormone Levels in Adult Celiac Patients https://pubmed.ncbi.nlm.nih.gov/36619734/ Effect of vitamin B1 supplementation on bone turnover markers in adults: an exploratory single-arm pilot study https://pmc.ncbi.nlm.nih.gov/articles/PMC12075007/
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      during the gluten challenge I did not consume any wheat germ   the wheat germ is TOASTED - it's the only way it is sold now afiak doesn't matter I consume vast amounts of lectin containing foods PROPERLY prepared and have for well over a decade. They do not bother me in the least.    no anemia however the endo who ordered the celiac panel is the one who suggested the 2 week gluten challenge of eating at least 2 slices of bread per day or a serving of pasta- ALSO put me on a new drug at the same time (not a good idea)  I ate 4 slices because they were thin, or 2 English muffins, and just once some lasagna that someone else made since I stopped eating wheat pasta years ago. The English muffins caused some of the worst symptoms but that pc of lasagna almost killed me ( not literally but the pain was extreme) during those 12 days there were at least 3 times I considered going to Urgent Care.   This entire process was a waste of time TBH due to being on that new drug at the exact same time. it is impossible to tell if the drug I am taking for the possible renal calcium leak is working or not- given the dramatic response to the gluten challenge and resulting nausea (no vomiting) and eventually a loss of appetite and lower intake of foods so now I have a dangerously low potassium level   I don't have a simple case of celiac or no- I have an extremely complicated case with multiple variables I am seeing an endocrinologist for a problem with the calcium sensing glands - that system is very complicated and she has been unable to give me a firm diagnosis after many tests with confusing and often alarming results. She also appears to be inexperienced and unsure of herself. but I don't have the luxury of finding a new endo due to multiple issues of insurance, lack of drs in my area, money and transportation. so I'm stuck with her At least she hasn't given up    in any case I can assure you that lectins are not and never were the problem. I know they are a favorite villain in some circles to point to, but I have ZERO symptoms from my NORMAL diet which DOES NOT contain gluten. The longer I went without bread or foods with wheat like raisin bran cereal, the better I have felt. my body had been telling me for several years that wheat was the problem- or maybe specifically gluten, that remains to be seen- and stopping eating it was the best thing I could have done   I almost had unnecessary MAJOR SURGERY due to joint pain that I ONLY have if I am eating bread or related products I assumed it was the refined grains - never really suspected gluten but it does not matter I won't put that poison in my body ever again not that it is literally poison but it is def toxic to me        
    • knitty kitty
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By knitty kitty · Posted

      @catnapt,  I'm sorry you're having such a rough time.   How much wheat germ and how much gluten were you eating? Lectins in beans can be broken down by pressure cooking them.  Do you pressure cook your beans?  Were you pressure cooking your wheat germ? What drugs are you taking?  Some immunosuppressive drugs affect IgA production.  Do you have anemia?
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      oops my gluten challenge was only 12 days It started Jan 21s and ended Feb 1st   worst 12 days of my life   Does not help that I also started on a thiazide-like drug for rule in/out renal calcium leak at the exact same time No clue if that could have been symptoms worse 🤔
×
×
  • 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.