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Absolutely Everything I Wanted To Know About Cd...
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Absolutely everything I wanted to know about celiac disease....

:)A doctor decribes celiac disease

:o WOW!!!.... this answered any and all of my questions!!!!! :lol:

<{POST_SNAPBACK}>

nice! Thanks for posting that!

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Thanks for this Amandasmommy! Will be printing it to educate a few people :D

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Thanks! That is a really good one, I am sending it to my sister......

Karen

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Thanks!

I am going to print it out and give it to my hubby to read

--Maya

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Hi amandasmommy,

Thank for this link...what a great article!! :) So often I read medical articles that are written in such a "doctorly" manner. Since this one is so easy to understand

I'm going to send it to a few family members that just haven't been able to get it, or refuse to believe they have it.

Wendy

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From the article:

"When somebody presents with severe diarrhea and wasting, that means most of the small intestine is damaged and it is not able to

compensate for the damage closer to the stomach. So it is the amount

of the small intestine that is damaged which determines the symptoms.

If you have all of the small intestine damaged you'll have diarrhea and

weight loss. If only a small portion of the small intestine is

damaged, you may have pain, bloating, and discomfort after eating but

not diarrhea."

This seems to explain why different people take different amounts of time to heal. I had NO idea that if you had diarrhea and weight loss that the damage was so extensive. I have to heal my whole small intestine! That's 26 feet of innards! I thought it was just the top part. No wonder it's taking so long.....

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WOW E WOW --- Wouldn't it be nice if we could all have this guy for our doctor? Someone who REALLY gets it. His patients are very lucky people, I hope they realize it.

Barbara

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Hey Shimma!

The best way to tackle 26 feet of innards is one foot at the time, eh?

;)

Most people, it "one day at a time", for celiacs, we measure improvement by the foot!!! LOL!! :P

Karen

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After reading this, I checked out more of Dr. Murray's writings. I like his policy about doing bone mineral density scans on his patients. If we can ever sell our house, I know which doctor I will be attempting to see. Thanks for pointing this out.

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your welcome. this explains so much more for me, and it will also help my family and friends too. i sent it to em all.

this also explains why amanda is thin and i am not. also before we found out about her having celiac disease we almost lost her, i know that now. she wasn't just skinny, she was boney, bloated stomach and steatoreah ( i hope i spelled it right) yea not just diareah. she was slowly starving to death, i was soo scared.

i do think more people need to hear about this, even test them selves. that is also why im trying to contact oprah. click hear to reply to my post on oprah.com. just page down to see mine.

did you see the percentages of having celiac disease? i bet the more people who test themselves the more common it will be!!!!!

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In fact, Dr. Marsh in Manchester (England)

has put gluten in the rectum and in a couple of cases he had DH

patients claim that they got an attack of DH afterwards.

~Hahaha! I had to laugh when I read this! OUCH!

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i do think more people need to hear about this, even test them selves. that is also why im trying to contact oprah. click hear to reply to my post on oprah.com.  just page down to see mine.

did you see the percentages of having celiac disease? i bet the more people who test themselves the more common it will be!!!!!

<{POST_SNAPBACK}>

Hey!!! I wrote to Oprah too saying that she needs to do a show on this!!!! I hope she does!

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Thank you!!! AMANDASMOMMY. That was excellent. I have made a copy for my husband to read. And the next copy is going to my daughters doctor. I have been trying to get her tested, and her doctor said he would have to do a colonoscopy to determined if she was a celiac or not. It makes me so mad that hes a md and totally clueless.

Anyway, that a whole another thread. Many thanks for the info.

:D:D Susan (GITRDONE)

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In fact, Dr. Marsh in Manchester (England)

has put gluten in the rectum and in a couple of cases he had DH

patients claim that they got an attack of DH afterwards.

~Hahaha! I had to laugh when I read this! OUCH!

<{POST_SNAPBACK}>

They'll do that for some gluten challenges, instead of 3 months eating gluten. I don't know... sounds painful, but not as painful as 3 months of gluten! ;-)

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I having a few moments to do whatever, thought I would have a look at some old posts on this forum. I came accross this, and the referral to an article, which might be a little bit old, but I think it was great reading, and probably worth bringing back up again.

Cathy

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    • The tests you provided can not provide any information pertaining to celiac disease.  You must be consuming gluten daily for 8 to 12 weeks in order for any of the celiac blood tests to work.  Only 2 to 4 weeks for the intestinal biopsy.  But both, yes, both are needed for a celiac diagnosis because many other things can cause intetinal villi damage.  Why isn't your doctor following the standard algorithm for diagnosis.  Does he even suspect celiac disease?   Got to head to school.  More later!  
    • I've been eating gluten for 4 weeks now, as recommended by my doctor, to test for Celiac. Today I got 'some' of my blood test results back, although not all... I have my biopsy test scheduled for tomorrow morning, but I don't know if I should go through with it or not if the other results are not back by morning (which would show a clear positive or negative)... The results I got so far have a few alarming numbers...

      My platelets are marked as High, being 484 x10^9/L but what I found more confusing was that my ESR is a Low 5mm (with average rate being 10 - 14)... 

      My Ferritin (Serum) is 36 ng/mL which I think is low(?)

      I'm no doctor, and I know that the best thing to do is ask a doctor, but I'm quite sure that if I go for my biopsy appointment tomorrow my specialist would insist on me taking it, even if the other results are not back by then. I'm sure it's not a pleasant experience and would like to avoid going through with it unless it is necessary. 

      Also, I took my blood test after eating gluten for only 3 weeks (since that was a week ago), and if my blood tests result as negative, I'm thinking about trying to keep eating gluten for another 4 weeks and test again then... if that comes positive, I'll then want to have the biopsy test done.

      What do you make of the above numbers? Any connections with celiac? Or with something else? 
    • The first two tests (at least in the US and most of the EU) have been replaced by the DGP tests (at the bottom) of GFinDC's list of celiac tests.  Not all celiacs test positive to the common Screening TTG.   The TTg is good and catches most and it was cheaper to run the best one (it is all about the money), but researchers realized they were not catching all celiacs.  Here is a link to the University of Chicago's celiac website.  When I was diagnosed three years ago, this site recommended just the TTg (as did the American GI Association).  Now they have expanded the list of celiac tests.   http://www.cureceliacdisease.org/screening/ Luckily, my GI must have just attended a GI conference and he ordered the complete panel for me.  ($400). It paid off.  Only my DGP IGA was positive and the rest of the blood panel (including the popular TTG test) was negative.  My biopsies revealed some severe intestinal damage.  My new health provider only allows PCP/GP doctors to only order the TTG.  So, if I want the follow-up testing to see if I have improved or had a gluten exposure, I must go to my New GI.  Yep, it is all about the money!   Keep eating gluten and make sure your  GI takes four to six samples during the endoscopy.  Maintain copies of all your results.   Your symptoms?  Yes, there are over 300 celiac disease symptoms.  celiac disease does not just affect the gut, but mis-informed and those who do not keep up with the latest in medical, do not seem to know that!   Do not give up!  
    • It's great to hear from you, Nightsky.  Glad to also hear of your steady progress.  Living gluten free is definitely a learning process, and even the baby steps are times to celebrate.  Wish you all the luck in the world as you continue to heal for the glutenization.  
    • Hi Nicky, When you first go gluten-free your symptoms often do change.  Feeling better or worse is possible.  The healing process is a major change in our gut and that means a big change in the gut flora is likely,  which can cause symptoms by itself.  Additionally the immune system doesn't stop making antibodies on a dime.  the immune system keeps working  to defeat the gluten invaders until it is darn good and ready to take a break. You really shouldn't start the gluten-free diet until all testing is completed.  That includes a full celiac disease panel and an endoscopy with biopsy samples.  It's much easier to complete testing while still a gluten eater than it is to stop gluten and go  back on it for testing later.
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