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Doctors
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I am 39 years old and suffered from undiagnosed celiac disease for 6 years. I finally got a good doc in pittsburgh who was able to dianose what my other gi doc couldn't do in 6 years. The problem is that I have soem nerve damage due to this disease. My gi doc recommended that I see a neurologist but he didn't give me a name. Needless to say, I found someone on my own and went to him today. It was a joke. You see, 4 years ago, I had a ct of my brain and there was calcification on my brain stem. Now that I know what is wrong with me I take no ones word. Due to the vision problems I have occasionally and the numbness on my left side (arm and leg at times), I wondered if all of this could be tied togehter. I stumbled across some research linking calcification of the brain and celiac disease. This doc today clearly knew nothing about celiac disease and the neurological effects of it. He is going to get my old ct scan of my brain and review it. That is, after he is done fighting with his contractor on the phone in his high glitz office in pittsburgh. I could clearly tell that he knew nothing about celiac. Can anyone recom. me to a neurologist that is knowledgeable with the effects of celiac disease or even knows what it is? I feel like I did 6 years ago when no-one believed in the medical profession that anything was wrong with me other than irritable bowel. Help please. natalie

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Sorry, I dont know of any doctors. But one thing I've definately learned from having this disease is that most doctors are idiots. They think they know everything and that whatever they say can't be wrong. It makes me mad that medical schools in this country tell these people that celiac is so rare that no one that comes into your office can possibly have it. Luckily I had a good doctor that keeps up with current research and tested me the first time I saw him. That is very rare with this disease. I think its a conspiracy of the prescription drug companies that keep this disease hush hush because it's misdiagnosed for so many things such as IBS that a magical little pill made and sold by these companies will make alll better. If the patient is told the truth and that all they have to do is simply change their diet then the drug co.'s lose a sale.

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has anybody seen the commercial for that new drug Zelnorm. It is for women with IBS. It totally lists symptoms of celiac and then tells people to go get Zelnorm!! What a crock!!

Just my opinion!

-Jessica :rolleyes:

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Zelnorm is for IBS with constipation well I called my regular doctor and her nurse told me they give it to their patients that have diarrhea!!!! Can you believe that? My GASTRO doc said that was a NO NO! Talking about clueless!

Also while reading online about IBS it stated that when IBS patients started a gluten-free diet, they improved WELL I WONDER WHY?

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I'm sorry to say that I don't know of a good neurologist. However, I'm from Pittsburgh as well and I'm not sure if you know this or not, but there's a great support group in the area. If you're not involved with the group yet and are interested, just e-mail me and I'll give you the contact information. I'm sorry you're having such horrible experiences with the medical community and I hope someone comes through with the information you need.

~Marie

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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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