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Doctors

natalieb

By natalieb
in Doctors

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natalieb Rookie
natalieb
Posted

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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AntiGluten Rookie
AntiGluten
Posted

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.

angel-jd1 Community Regular
angel-jd1
Posted

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:

Guest jhmom
Guest jhmom
Posted

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?

  • 1 month later...
Wish Newbie
Wish
Posted

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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      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
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