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. - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    2. - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    3. - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    4. - Ello replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

    5. - trents replied to Ello's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Small Bowel Resection 12 inches

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

    • Total Members
      132,834
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • trents
      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
    • trents
      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
    • trents
      There are two gluten-related disorders that share many of the same symptoms but differ in nature from each other. One is known as celiac disease or "gluten intolerance". By nature, it is an autoimmune disorder, meaning the ingestion of gluten triggers the body to attack it's own tissues, specifically the lining of the small bowel. This attack causes inflammation and produces antibodies that can be detected in the blood by specific tests like the TTG-IGA test you had. Over time, if gluten is not withheld, this inflammation can cause severe damage to the lining of the small bowel and even result in nutrient deficiency related health issues since the small bowel lining is organ where all the nutrition found in our food is absorbed.  The other is NCGS (Non Celiac Gluten Sensitivity or just "gluten sensitivity") which we know less about and are unsure of the exact mechanism of action. It is not an autoimmune disorder and unlike celiac disease it does not damage the lining of the small bowel, though, like celiac disease, it can cause GI distress and it can also do other kinds of damage to the body. It is thought to be more common than celiac disease. Currently, we cannot test for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Both disorders require elimination of gluten from the diet.  Either of these disorders can find their onset at any stage of life. We know that celiac disease has a genetic component but the genes are inactive until awakened by some stress event. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% develop active celiac disease. The incidence of NCGS is thought to be considerably higher. I hope this helps.
×
×
  • 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.