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Do I Have This Disease?
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9 posts in this topic

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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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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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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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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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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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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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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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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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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    • First, do you have celiac disease?  Have you recently had a celiac antibodies follow-up blood test panel to see if gluten has been actually getting into your diet by accident or through cross contamination?  If you haven't had the test, you should ask your doctor for one.  You could also also ask for a follow-up endoscopy to see if you intestines have truly healed.  This will rule out if gluten is really the problem.    If you don't have celiac, I assume you have Non-celiac gluten Intolerance because no one would stick to the gluten-free diet for six years unless you have had reductions in symptoms.  There is no test for NCGI unfortunately.  So, it is hard to say if gluten has been sneaking into your diet.  You really are going to have to try to figure out if you are getting gluten into your diet.  If gluten is not the problem, then your doctor needs to check you for other issues, like SIBO. There is a test to check for SIBO.  Has this been done?   Once a celiac, always a celiac.  There is no cure for celiac disease except to remain on a gluten free diet for life.  I am not sure about NCGI.  Not much research has been done.  Maybe others can chime in?    
    • I am so confused right now.... 6 years ago I went on gluten free diet... after being on it for the first yr I was 100%better up until 5 months ago in got the "flu" the doctors told me to cut out dairy sonic did and my diarrhea  became better but not completely gone would not have it every day tho. I went to the gi doctor and they said to cut out fructose and dairy and keep gluten out... yesterday I went to the dietitian to see what I can eat and she gave me the list for fructose... she said it should have been on a antibiotic for sibo.... eventually I will be able to add dairy back and maybe gluten.... I said how can I add gluten back when this was my first problem... she goes well through fructose goes hand in hand with it... I said with gluten I vomit and am sick for weeks.... fructose isn't that bad I vomit sometimes but I'm not sick for weeks.... I'm just confused on really what is going on and was wondering if you or someone you know had sibo from gluten and or fructose and how Is this all related?
    • I see no one has responded to your query.  Unfortunately I have yet to try making a pie crust.  It was something I never mastered before going gluten free.  Have you looked on Pinterest?  You might find something there.
    • I honestly feel like both doctors think it's all in my head even though there is proof.  Yeah there was a point when I felt crazy.  That was when I was being shuffled from dr to dr being given individual diagnoses of my problems.  None of those diagnoses ever made me get better.  Seriously I was diagnosed with heart palpitations, neurocardiogenic syncope, I was given a butt load of steroids because a dr felt like I was producing too much adrenaline, freaking had a few tell me I was depressed, and the good ol IBS.  It seemed most wanted to push pills.  It's all just ridiculous!
    • I can't believe your doctors!!! You have a daughter who is dx'd already! Yet the ped doesn't want to test your other kids unless you have a dx????!!! Are you kidding me???!!! That's absurd!!! They have a first degree relative who has been dx'd with celiac already. There is no need to wait to see what you turn out to be!! And then, and then, and then....don't even get me started on your doctor!!! Does he have brain damage? Oh this is insane & ridiculous!  I have never heard of a disease that doctors are so unwilling to consider or test for OR to diagnose as this one! Usually they are hot to trot to make a dx but say the word celiac & they shake in their boots. Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!!!!!!!!!
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