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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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  • Recent Activity

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
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