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Symptoms?


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#16 Canadian Karen

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Posted 12 May 2005 - 12:18 AM

Hi Mpost! Welcome to the board!

In regards to the chronic diarrhea, BOY! do I know what that is!!!

I have had permanent diarrhea for a decade now. I have been on the diagnosis roller coaster that so many celiacs have been on. In my early 20's, after a trip to the Carribean, is when my problems started. Abdominal pain, chronic diarrhea, trips to ER for attacks, etc. I was first diagnosed with celiac in my early 20's but after a year on the gluten-free diet without any results, the diagnosis was then changed to IBS, then Crohns, etc. etc. etc...... It wasn't until a few years ago the bloodtest confirmed it was indeed celiac, so back on the gluten-free I went. After 2 years of AGAIN no results (still permanent diarrhea), my GI doctor sent me to a professor at St. Mike's hospital (I have been told that he is the best in Canada!). After further testing, a colonoscopy discovered I have collagenous colitis, which only affects 2 out of every 100,000 people. It can only been diagnosed by a pathologist through a microscope as it cannot be seen by the naked eye during an examination as it affects your cells..... I am currently trying to get it under control with steriods (prednisone....). If you google up collagenous colitis, it probably will sound very familiar to you!!!

It would be interesting to do a poll to find out what type our personalities are here on the board as I am very much like you also..... anxiety, perfectionist, etc.etc.

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

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#17 celiac3270

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Posted 12 May 2005 - 03:27 AM

I think I am a bit confused about something. I have read some posts where some of you have said that you got positive blood test results, but wanted to get an endoscopy for a solid diagnosis. What else would make the celiac panel positive beside gluten intolerance/celiac? Would it be possible to have positive blood work, and not have any issues with gluten? Sorry if this is stupid but I just dont get it..
Sabrina


Yes. Positive bloodwork is really all you need for a positive diagnosis of celiac disease. Traditionally, though, doctors like to perform an endo. as well; if damage is found in the intestines there's basically no doubt about it then. The thing is, even if no damage is found, the patient should still go gluten-free on the basis of pos. blood--and the damage might have been missed, etc. It's not possible to have pos. bloodwork and no issues w/ gluten...well, if the testing was messed up or something, I guess you could get a false positive, but if you accurately get tested pos. for it, you have an issue with gluten, whether you feel it or not...

Not stupid at all... ;)
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#18 mpost

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Posted 15 May 2005 - 06:15 PM

I am going to be assertive. I would like the colonoscopy after 7 years of chronic "D" just for my own peace of mind. I plan on taking my notes to the doctor with me. If he is willing to discuss them with me, then great. If not, I will shop for a different doctor that is more willing to discuss my health.

And I am going to look into the collagenous colitis.

I am finally getting over my fear of wondering what is going on with my body and ready to do something about it. I have been looking at the gluten-free sites and I think that there are some great alternatives out there. At least they seem great if they taste well enough, but I would be willing to forego a little taste just to get out of the bathroom once in a while!

I am preparing for the right mindset. I don't want to go gluten-free until after the tests but I am catching myself examining all foods. I have already gone through my pantry. I have scared myself about later eating anything besides salad with my own salad dressing that I will bring to a restaurant. Tonight I was on the phone with a friend who was telling me the dinner menu for the night. I was making a mental checklist in my head - Can't have that. Might be able to have that, etc.

Just making my preparations.
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#19 julie5914

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Posted 16 May 2005 - 04:14 AM

Yeah, I had a sigmoid as part of the IBS study that told me I was positive for celiac (blood tests). It gave a tremendous peace of mind, I have to tell you.

I saw a post earlier about the vaso vagal syndrome, when you get dizzy after standing up quick or after standing in one place at the same time. Is that related to celiac? I started noticing that problem in college, after I had mono (which I think is what set of my celiac). I was in band and starting having to get off the field because I was about to pass out. It has also happened a few times at Six Flags, once at the dreaded DMV line, and once at a choral concert I was performing at. For a long time I thought I was dehydrated, but it was actually just that I had been stading in the same place for a long time.

I am waiting to see if my doctor calls me about these test results to see if he wants an endo. Otherwise I am just gonna stick to a gluten-free diet and tell other docs about the positive blood work. I have a gyno appt. today - I wonder if she will able to help. I just found out on Fri.

I have read in some places that celiac can cause anxiety. I don't have it bad, but I am hoping the gluten-free diet will help me out a little.
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Blood work positive
Dx with IBS 5 years ago
Dx with Celiac and gluten-free since 6/17/05

#20 judy05

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Posted 16 May 2005 - 07:46 AM

Julie, you sound like me. I didn't really notice a big improvement until I gave up on Dairy. Try going off for a week or two. I also had the York test and found that I was intolerant of Cow's milk, yeast, corn, egg whites, and of course wheat. I am trying to stay away from these things. I can eat cheddar cheese and I drink Calcium fortified OJ because Calcium pills make me sick. Hope you feel better soom.
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The one resolution, which was in my mind long before it took the form of a resolution, is the key-note of my life. It is this,always to regard as mere impertinences of fate the handicaps which were placed on my life almost at the beginning. I resolved that they should not crush or dwarf my soul, but rather be made to blossom, like Aaron's rod, with flowers-Helen Keller



Judy- Gluten Intolerant

#21 mpost

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Posted 16 May 2005 - 08:26 AM

I don't know how this can be happening, but I am reading so much that I actually answer a question. On some of the websites I have found, it says that other food allergies could be present along with the celiac disease. I can't remember if the reading said it was caused by the celiac disease. Lactose intolerance was mentioned several times though.

I have another question, please. Can the doctor perform the biopsy at the same time that he does the colonoscopy or is that a different route altogether? LOL The website I read on the colonoscopy said that it stops at the end of the large colon, if I am not mistaken. But I spoke with a friend of mine who is a nurse, and she said that she felt like the doctors could do it at the same time, but they schedule it for different procedures so that the insurance can be billed twice. Does anyone know?
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#22 mpost

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Posted 16 May 2005 - 08:30 AM

One more question - good grief they just keep coming, don't they?

In February, I had an exploratory surgery connected with my ovaries. Before the surgery, the anestheoligist (sp?) said that I had an elevated white count. Does anyone know if this is a general problem just telling you that something is going on in your body or if it is associated with celiac disease or any of the digestive disorders specifically?

Thanks. One day my questions will run out - hopefully!
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#23 Canadian Karen

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Posted 16 May 2005 - 12:09 PM

Hi!

Lactose intolerance would be mentioned several times as it is the one that happens most due to celiac. With celiac disease, the immune system sees gluten as a toxin sends out "attackers" to attack the gluten which, by this point, is in your intestine. But unfortunately, while attacking the gluten, it also attacks the villi (which is the little fingers through your intestines that breaks down/processes/digests your food. The part of your intestines that breakdown/digest lactose is at the very tip of these villi. So even with celiacs that do not have severe damage, lactose intolerance usually shows up very early due to the fact that the part of the villi that processes the lactose is the first to go......

Also, a colonoscopy goes "up" from below and an endoscopy goes "down" the throat. I haven't heard of anyone having them done at the same time. Having had both of them, I would have to say that I don't think I would want to the experience of having tubes in "both ends" at the same time! :o ;)

Don't apologize in any way for asking questions! That's what this board is all about! Our motto is "No question is too stupid to ask". We have all been down this road and know how difficult it is to travel.......

Peace.
Karen
  • 0
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

#24 judy05

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Posted 16 May 2005 - 06:14 PM

About the elevated white count, a slightly elevated one usually is a sign of an infection. A really elevated white cell count can be something entirely different. It is best to check with your MD about the count and what it means. If it was anything really serious they would not have done the surgery and probably started you on an antibiotic. Hope this helps..
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The one resolution, which was in my mind long before it took the form of a resolution, is the key-note of my life. It is this,always to regard as mere impertinences of fate the handicaps which were placed on my life almost at the beginning. I resolved that they should not crush or dwarf my soul, but rather be made to blossom, like Aaron's rod, with flowers-Helen Keller



Judy- Gluten Intolerant

#25 mpost

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Posted 17 May 2005 - 09:30 AM

Thanks, Judy. They did start me on an antibiotic through an IV right before the surgery started. Now I am thinking that it was a silly question. LOL I could have had a ear infection and it would elevate the white count! Of course those results don't come with a diagram to give any indication of the source. LOL Thanks for your patience.
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#26 Canadian Karen

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Posted 17 May 2005 - 09:37 AM

There's no such thing as a silly question on this board!!! ;)

Karen
  • 0
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

#27 judy05

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Posted 17 May 2005 - 10:36 AM

Mpost. I've been a nurse for many years, if I can answer any questions I will but I am not allowed to recommend medications or supplements. There's never a silly question, don't be afraid to ask....Judy :)
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The one resolution, which was in my mind long before it took the form of a resolution, is the key-note of my life. It is this,always to regard as mere impertinences of fate the handicaps which were placed on my life almost at the beginning. I resolved that they should not crush or dwarf my soul, but rather be made to blossom, like Aaron's rod, with flowers-Helen Keller



Judy- Gluten Intolerant

#28 mpost

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Posted 26 May 2005 - 07:22 AM

Well, I am disappointed again . . . I just came back from my doctor's appointment. He went over the lab results and everything came back negative. I was just about to ask him about the celiac panel when I saw him writing it in my chart. I was surprised to find out that he had done a celiac panel on my initial labwork and that was part of the negative results. I have not gone gluten-free so I know that didn't confuse the results.

He scheduled me for a colonoscopy and still says that he thinks it is Krohn's or Ulcerative Colitis. I told him that I didn't understand how either of those could be my diagnosis since my only "like symptom" was the chronic "D" and he said that was all it took. This just doesn't seem right to me.

The colonoscopy will include biopsies so we will see what that brings. I don't understand the negative celiac panel results when I met so many of the symptoms described.
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#29 julie5914

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Posted 26 May 2005 - 10:26 AM

From what I have read, Chron's can also give you all kinds of trouble. Go for the colonoscopy - it will at the very least rule out a few more things and make you feel better knowing that your colon is ok (hopefully). Sounds like it is doubtful that you have celiac if you bloodwork was negative, but if the colonoscopy comes back fine too, I would push for an endoscopy. By that time they will have either found something out or ruled everything out but food allergies.
  • 0
Blood work positive
Dx with IBS 5 years ago
Dx with Celiac and gluten-free since 6/17/05


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