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Do I Have This Disease?


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8 replies to this topic

#1 Dove

 
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Posted 29 August 2005 - 07:34 AM

Hi. I know you all aren't doctors, and I do have an appt. to see a gastroenterologist in a week, but I'd like to hear what you think. I have had abdominal trouble for years, which was always attributed to Irritable Bowel Syndrome. I even had both Upper and Lower GIs done 2 years ago, which came back normal. But nothing ever stops the pain and bloating. Recently, I have had another strange thing happening...(sorry about being so descriptive)...which is oily diarrhea and gas. Sometimes I feel the horrible cramping, but when I visit the toilet all that comes out is gurgling gas. Then afterwards I notice that there are pools of yellowish oil floating on the water. I usually have diarrhea, but sometimes constipation. But the worst thing is the cramping. It doesn't seem to get any better after a stool, either. You'd think that would relieve it, but it doesn't. As far as the other symptoms of celiac disease, I do have a lot of body aches and am tired all the time, but this was always attributed to Fibromyalgia. (I think "Fibromyalgia" is just another word for, "We don't know what's wrong with you".) The one thing is DON'T have is weight loss. I am about 40 pounds overweight, and have a very hard time losing it. This makes me think it may not be celiac disease. Also, wheat products bother me a lot - especially whole wheat, as do oats. But other things bother me too, such as nuts, carrots and spinach. What do you think?
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#2 Canadian Karen

 
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Posted 29 August 2005 - 07:38 AM

Sounds like classic celiac to me...... Make sure you stay on gluten though until all the testing is complete......

Oh, and by the way, Welcome to the Board!!!!

Karen
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Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#3 KaitiUSA

 
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Posted 29 August 2005 - 10:21 AM

Sounds like it could be celiac. You should get a full celiac panel done to check for it.The following is the panel:
Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Total Serum IgA


Everyone has different symptoms and there are over 200 symptoms-you do not have to have any symptoms at all. Some people gain weight instead of lose it too.
Alot of doctors are not up to speed on things with celiac.

Welcome to the board-this is a wonderful site...we have people on here who are very knowledgable and are very supportive.
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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#4 nettiebeads

 
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Posted 29 August 2005 - 10:39 AM

Hi.  I know you all aren't doctors, and I do have an appt. to see a ..(sorry about being so descriptive)...which is oily diarrhea and gas.  Sometimes I feel the horrible cramping, but when I visit the toilet all that comes out is gurgling gas.  Then afterwards I notice that there are pools of yellowish oil floating on the water.  I usually have diarrhea, but sometimes constipation.  But the worst thing is the cramping.  It doesn't seem to get any better after a stool, either.  You'd think that would relieve it, but it doesn't.  As far as the other symptoms of celiac disease, I do have a lot of body aches and am tired all the time, but this was always attributed to Fibromyalgia.  (I think "Fibromyalgia" is just another word for, "We don't know what's wrong with you".)  The one thing is DON'T have is weight loss.  I am about 40 pounds overweight, and have a very hard time losing it.  This makes me think it may not be celiac disease.  Also, wheat products bother me a lot - especially whole wheat, as do oats.  But other things bother me too, such as nuts, carrots and spinach.  What do you think?

<{POST_SNAPBACK}>

Yep, that was me nine years ago. Except for the 40 lbs overweight, which happened to me later after my 3rd divorce, but that's another story. And don't worry about being descriptive, we've read and/or posted it all. We're here to help. And the tiredness is very common when you have celiac disease. I mean, not the lack of sleep tired but swimming upstream in a molasses river in January total exhaustion fatigue. Although a classic symptom of celiac disease is unexplained weight loss, that doesn't mean you can't be overweight too. I was and still am, only more so now. And the problems you have with other foods may be because of damage to the small intestine. After going gluten-free, it should show signs of improvement as it heals. The problem I found with celiac disease is that because there isn't a way to help us with pharmocology of one sort or another it is almost like an "orphan" disease. But going gluten-free isn't the worse thing in life. Keep us posted!
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#5 Canadian Karen

 
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Posted 29 August 2005 - 11:09 AM

I mean, not the lack of sleep tired but swimming upstream in a molasses river in January total exhaustion fatigue. 

<{POST_SNAPBACK}>


Nettiebeads,

I love your description of the exhaustion we feel!!!! LOL! :lol:

Karen
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Karen

positive bloodwork, positive biopsy
Celiac, collagenous colitis, hypothyroidism
endometriosis (at age 20)
spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.
Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs
Rhiannon 8 yrs
Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."
Orison Swett Marden


Laughter is the shortest distance between two people.
-- Victor Borge



"An optimist laughs to forget. A pessimist forgets to laugh."
Tom Nansbury


"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."
Unknown

#6 nettiebeads

 
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Posted 29 August 2005 - 12:50 PM

Nettiebeads,

I love your description of the exhaustion we feel!!!! LOL! :lol:

Karen

<{POST_SNAPBACK}>

Well, every now and then I let my southerness out. Glad you liked it.
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gluten-free since Oct 1996

#7 KaitiUSA

 
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Posted 29 August 2005 - 02:53 PM

This is a post by Lisa Baker that was sent to the moderators by accident:

WELCOME TO THE CLUB! I was diog. with a poss. biopsy about three weeks ago and I have had and still do, have the same exact symptoms that you do. I NEVER get too far from a bathroom and the warning bell is a short one.

Take advantage of all the informed peps on this site to help guide you and it will give you some satisfaction that you are not alone -- truely, others share your "pain".

Everyone here can work you through your frustration and you get to know who knows best about a certain subject. Keep checking in and read the posts, go to the forums and choose a subject. Learn-learn-learn. You are your best Dr. because you know your body more than anyone.
(but don't forego the MD"S - inform them)

Keep the faith and as someone told me, "be grateful, Celiac Disease does not controll your life, you controll Celiac." The power is within.

Lisa B.

(just noticed, I have THREE squares....whoah)
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Kaiti
Positive bloodwork
Gluten-free since January 2004
Arkansas

Jeremiah 29:11- "For I know the plans that I have for you, declares the Lord, plans for you to prosper and not harm you,plans to give you a hope and future"

"One Nation, Under God"

Feel free to email me anytime....jkbrodbent@yahoo.com

#8 Dove

 
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Posted 30 August 2005 - 07:35 AM

Thanks a lot. That panel you mentioned...do I need to ask the doctor specifically to do those tests, or will he automatically do all that based on my symptoms?

Wanda
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#9 Dove

 
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Posted 30 August 2005 - 07:40 AM

Also, one more thing...I read something about a Selective Carbohydrate diet. (Was that what it was called?) Have any of you tried this? If so, is it hard to stay on? It seems so detailed and difficult. Is it necessary to be that drastic, or does just cutting out the gluten do the trick?

Wanda
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