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Extreme Exhaustion And Body Aches?


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#1 Amy0916

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Posted 26 July 2010 - 04:10 PM

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?
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#2 tdads

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Posted 26 July 2010 - 05:12 PM

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)

  • Diarrhea (could be up to 10+ times a day and very smelly. Not an issue except when I accidentally digest wheat/gluten)
  • Gas (gone)
  • Bloating (gone)
  • Scalp psoriasis (gone)
  • Hair loss (still have this issue)
  • Eczema (gone)
  • Rosacea (gone)
  • "Foggy thinking" (gone)
  • 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.)
  • Heat rash (very infrequently, but it has happened)
  • 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)
  • Allergies to dogs/cats, mold, dust, pollen, smoke (gone)
  • Asthma (gone)
Best of luck with your diagnosis!
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Celiac's
Ulcerative Colitis
Diagnosed February 2010

"It's too bad stupidity isn't painful." - David Sedaris

#3 lucia

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Posted 26 July 2010 - 05:48 PM

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.
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#4 cassP

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Posted 26 July 2010 - 07:28 PM

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
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1986- Elevated Speckled ANA/no Lupus.negative Sjorgens
2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.
no biopsy (insurance denied)
6/2010- Enterolab Gene Test:
HLA-DQB1 Allele 1 0302
HLA-DQB1 Allele 2 0302
HLADQ 3,3 (subtype 8,8)
7/2010- 100% Gluten Free
8/2010- DH
10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

#5 crimsonviolet

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Posted 26 July 2010 - 07:29 PM

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.
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#6 Skylark

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Posted 27 July 2010 - 09:35 AM

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. http://celiachometest.com/ 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.
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